The Cyst that Whispered, The Storm that Followed
Navigating a Triple Negative Breast Cancer diagnosis, Self-Advocacy and the Fight to be heard.
I’ve been dancing with the idea of writing this for a while now. I knew as I was going through the process of the medical system and my own mental process of navigating what I felt was right for me, that someday I would want to document it. Share it. And, when I wasn’t able to find anyone like me, no one who had gone through similar and wading through the sea of “do this or don’t do that” recommendations, that I would have a story to tell, one that might someday help someone else.
This is anything but a short story - but it is a true story and one I’ve muddled through with a lot of grit and unfortunately at the time, not nearly as much grace as I would have liked. But I’m in a place of healing, gratitude and grace now, so the timing feels right to get it all down.
Time is strange. This whole experience literally feels like a lifetime ago, yet the wound/incision of healing is still very much in active healing and that reminds me it was literally just the other day (it's been 2 months since I had surgery). Before we go into the gritty, I want to make a few disclaimers. This is MY story, and I won’t be leaving many, if any details out. Where I have names, I will be using them - many people on my journey made this process difficult when any one of them could have stepped in to help or change the course. While others made this journey bearable and helped me through it as if there were angels sent straight to me.
The synchronicities were and have been incredible and continue to be. I will also be posting pictures; they are VERY graphic in nature (and for some might be too much), but they are me. They aren’t photoshopped or AI. They are pictures that either I or my homecare nurses took for me and were placed on my Connect Care patient file that my doctors access to communicate with each other. I am sharing them because without them, the story is just words and every time I’ve shared this story with others in person and THEN showed them pics, it shocks most so the pictures need to be included. If a picture is worth a million words, I can assure you, mine will explain how I ended up in an emergency surgery and it will show why I was getting so frustrated. But they are graphic and if you have a queasy stomach, just be warned. The worst of the photos are near the end. They are also of my breast of course, so if body parts offend you – this might not be the right story for you to read.
And finally, the last disclaimer I’ll make that is important is that this isn’t medical advice. I will be sharing what I did from very early on holistically to get my body to start healing on its own both in this story and in future blogs, I won't go into deep detail, likely will later, but nothing I share is medical advice. My protocol includes strong beliefs, herbs, functional pharma and nutrition. I will also share what decisions I’ve made going forward both in this post and others going forwards and while it’s not at all been the recommendations of the doctors, it’s important for anyone reading this to not take my story and make it their own. You must decide what is right for you and that conversation should happen with your medical team. Mine doesn’t agree with mine, we have very different opinions, but they have respected it. In fairness, I don't actually think they know the best way to move forward, although they try to sound convincing…more on that later. So, with that out of the way, I’ll begin the story. Hopefully you’ve grabbed a cup of tea or coffee or beverage of choice and are comfortable. I’m not sure how long this is going to get but I expect it to go long.
THE BEGINNING
Sometime in the early Spring of 2024 I noticed a bump on my right breast. It wasn’t a hard bump or very big for that matter. It felt a bit like a little water balloon, it was super tiny, wasn’t visible through my skin and didn’t really concern me, so I did nothing about it. I understand that most would say “why didn’t you go and get it checked?” Well, there were a few reasons. First, I had lost my family doctor, Dr. Smith. I had tried to book an appointment at one point with her early in 2024 because of a lingering cold/sore throat I had that would not let up and was told that I was no longer a patient at the clinic I was born into. Because I had not needed to see a doctor since 2019 when she removed my IUD, I was removed from their active patient list and my doctor wasn’t accepting any “new” patients. Confused, and very angry, I asked how after 48 years of being a patient at that clinic does someone get kicked out for not seeing a doctor. The lady I spoke with said, “even through covid years, you should have booked for a check up”. A check up on what? I wasn’t sick, they weren’t seeing people in person. That is a cash grab if anything else. I wasn’t going to do a “yearly checkup” on the phone - give me a break. She told me that was the clinic policy and I should have known that. Well, I was born into the Justik clinic, at no point was I ever made aware of their policy, AND the almost 5 years I lived in Calgary, I never went there and when I moved back home, picked up right where I left off, so none of this made sense. The entire medical system has so many issues I won’t even attempt to go into but suffice it to say, I no longer had a GP I could rely on; like many people in this country.
I also spent a lot of time in my 30’s in and out of doctors’ offices – with little to no answers or help, I ended up with self-education, naturopaths etc. to heal, so going to a doctor for me is usually LAST RESORT or for emergencies. So, when this little, tiny bump showed up, I went into research mode. I believed it wasn’t a “tumor” at the time because it fluctuated constantly, some months it wouldn’t even be detectable, other months, it was tender - always around the time I would have normally had my period. I was 47, turning 48 years old, and had been on some form of birth control my entire adult life until I was 42 so menopause surely was around the corner at best I was right smack in the middle of the transition. Cysts during menopause can be common. The Mayo Clinic website states: “Breast cysts are fluid-filled sacs inside the breast. They are usually noncancerous (benign). You may have one or multiple breast cysts. A breast cyst often feels like a grape or a water-filled balloon, but sometimes a breast cyst feels firm. Breast cysts don't require treatment unless a cyst is large and painful or uncomfortable. In that case, draining the fluid from a breast cyst can ease symptoms. Although breast cysts can be found in women of any age, they're more common in women before menopause, typically under age 50. Breast cysts also commonly occur in postmenopausal women who take hormone therapy. Breast cysts may be defined by their size:
Microcysts may be seen during imaging tests, such as mammography or ultrasound, but are too small to feel.
Macrocysts are large enough to be felt and can grow to about 1 to 2 inches (2.5 to 5 centimeters) in diameter.
Experts don't know exactly what causes breast cysts. They may develop as a result of hormonal changes from monthly menstruation.”
The Canadian Breast Cancer Society website states: “Breast cysts are fluid-filled sacs in the breast tissue. They are the most common non-cancerous (benign) breast lumps in women between the ages of 35 and 50. Breast cysts are rarely cancerous, and they do not increase your risk for developing breast cancer. You can have one or many cysts in your breast. The most common symptom of a breast cyst is a lump that feels smooth and soft. It moves very easily within the breast tissue. Cysts may change with your menstrual cycle. They can become large and tender just before your period and get smaller and less tender after it has finished. Some breast cysts are very small and can’t be felt. Most breast cysts go away without any treatment. If a cyst is very large or doesn’t go away on its own, doctors may offer to treat it. They may use a fine needle aspiration (FNA) to remove fluid from the cyst. They may do surgery to remove a cyst if there is blood in the fluid from the FNA or if the cyst comes back after the FNA. Doctors may also surgically remove cysts that are very large and painful.”
Further google searches led me to the Cleveland Clinic and Houston Methodist among many other websites that summarized: “Breast cysts are rarely cancerous, with simple cysts being 100% benign. The risk of cancer is very low for complicated cysts (less than 2%) and higher for complex cysts (20–30%), which have solid components and require further evaluation like a biopsy. It's important to have any new breast lump checked by a doctor, as they can use imaging to determine if a cyst is simple or complex and what further steps are needed”.
Cancer risk by cyst type
Simple cysts: These are fluid-filled sacs with smooth walls and are always benign.
Complicated cysts: These contain cloudy fluid or have irregular borders. They are still usually benign, with a cancer risk of less than 2%.
Complex cysts: These have solid components mixed with fluid, and they carry a higher risk of malignancy, ranging from about 20% to 30%”
Every website I looked up said the same thing, so I wasn’t super worried. I knew/felt strongly this was a cyst, it felt very fluid like, and I was under 50. It fluctuated with my invisible cycles and was tender at times and then not. By all accounts, it was a simple, maybe a complicated cyst but I wasn’t really all that concerned. I was, however concerned, (albeit not enough to deal with it), with how much weight I had put on, how my joints felt when I did any major movement, how I would crash immediately after eating and needed multiple naps a day just to get through. I knew I was far from healthy, I knew I wasn’t helping myself and I knew I was on a slippery slope of no return, but I also now realize I was in a bit of a depression of sorts too. I work from home (which I LOVE) but had almost no social life and when I was invited out, I preferred to say no because I wasn’t comfortable in anything I wore, or how I looked. It was “easier” to stay home and just be. And I made no effort to cook, preferring to eat late or not at all and when I did, it was almost always fast food or Slurpee’s, or if I cooked, it was pasta or heavy starch, carb loaded, sugary foods. I never turned down a date to a restaurant and was drinking Pepsi like I owned the company (this has been a lifelong issue for me since I started when I was 15). Sugar, chocolate bars and pop were my vice and my daily constant. And, when I would eat these things, within minutes I’d have the urge to sleep. I started noticing (other than the weight gain) that I was also getting skin tags, a lot of them. In looking up what causes them, often sugar spikes and insulin imbalance was the cause. I knew I was in a rut and it was easier to ignore (side note – you don’t actually “ignore” these things – living like this every day is EXHAUSTING) but cognitive dissonance is a fickle bitch. And changing AGAIN felt too hard. This is where the depression comes in, the change felt so hard, I just didn’t care. I was almost apathetic. I was going to be overweight and unhealthy and that was easier than focusing on getting well. Twisted way of thinking. It’s dark and scary to be in that space. If I paid no attention to my health and “ignored” the issues, what could go wrong? And did I care? Somedays I cared a lot and it bothered me immensely and other days I pretended it wasn’t an issue at all. I never cared enough to activate any form of change, or maybe I just felt paralyzed. I just carried on, felt guilty for eating like shit and not moving and flipped the page to the next day. Tomorrow I would change. Tomorrow I would go buy groceries that would nourish me and I would go for a walk. Tomorrow. That tomorrow never really came. Not soon enough that is.
I had studied Holistic Nutrition shortly after my diagnosis and treatment of Non Hodgkin's Lymphoma in 2014, realizing that the food I was eating then wasn’t helping me. After graduating as a Certified Holistic Nutritional Consultant, I did nothing with all that knowledge. I was in a job I hated and just let the reigns go. I knew the foundation to good health; I chose to preach and not practice any of what I was taught. Who would listen to me? Where would I get clients wanting to change their lifestyle and habits when I, myself, wasn't even willing to do the very thing I’d be recommending they do. I know I would never have hired me. So now I have this education and did jack all with it. I liked to share posts online, but talk about being hypocritical. I’d talk about the dangers of sugar while drinking a glass of Pepsi. Irony. Stupidity really.
So, when this cyst made an appearance, I chose to just watch it. It had all the hallmarks of a traditional cyst and the last thing I wanted was to be in the medical system. I had lost faith in the system YEARS ago and was defiant about getting back into it. I’d wait to see what this cyst did, if it changed or got bigger, I’d find a doctor. The year went on and life did too. No one noticed the cyst – still too small even for me to see, but I felt it fluctuate every month and would ponder whether I should see a doc and then I’d decide not to and months went on.
In January of 2025, my family and I started the process of buying a home that my brother and I would live in. My brother Duane has some cognitive disabilities and Schizophrenia and was living with my parents. To set him up long term, my parents and I purchased a home he and I both could live in with our separate suites and he could get some independence. It was an exciting, stressful time. The house market was crazy, and prices were climbing fast but as we started the process, everything moved quickly. This was exciting, I was in an apartment I loved but the management was going to shit, and I was stressed daily living there. Rent was skyrocketing, the service and amenities were in the tank, and I couldn’t wait to get out. In February we found the PERFECT home and our offer was accepted. I would move in over the month of April and Duane would move in later in May.
At some point in mid-April, and I have no idea when, this little cyst I had, was no longer little and had gotten MUCH larger. My bra no longer fit, and my breast was sticking out of my bra as if the right side was a push up bra. I don’t remember waking up and thinking “oh shit!” or anything, so it’s possible it was gradual, but at some point, it started to grow and change. It wasn’t so big that my clothes didn’t fit but it was changing. Early in May, my best friend Theresa came for a visit to see the new place. She asked me what I had in my bra that was making my boob so big. I knew then, I was in trouble. No one else up to that point had brought it to my attention but now it wasn’t small and others beside me could tell something was up. I promised her I would make an appointment to see a doctor. It didn’t hurt and wasn’t uncomfortable, but I agreed it was concerning and promised I’d get it checked. I would push on it, and it was just like a water balloon, it was a bit like a party trick. I figured, I’d see a doctor and they would drain it and remove the cyst pack like they do on Dr. Pimple Popper, and I’d carry on.
How wrong I was.
A few weeks after our visit, I was with my sister and nephews and my nephew Austin asked me what was wrong with my boob. He was the first in the family to say anything and as a kid with curiosity, he didn’t hold back. I told him something was going on and showed how it was like a water balloon, the cyst sat up high so even with a tank top on I could show the balloon like nature of it. I was very pliable. I went looking for a new doctor. I wasn’t interested in seeing a Medi-centre doc and a clinic not far from me was accepting new patients and a female doctor named Dr. Gafar had an opening for a meet and greet. I booked with her and hoped she would take me on as a patient.
Our first appointment was on May 30th. I was weighed and blood pressure taken and then put in a room to see her. When she came in, her disposition was calm and welcoming. She was empathetic and listened. I told her about the cyst, how long I had been “watching” it and how quickly it grew over the last month. I told her it didn’t hurt much at all and that I was more uncomfortable with how much my skin was stretching but I wasn’t at all scared of it. She, on the other hand, was shocked and pretty concerned. She said immediately that she would refer me to the Comprehensive Breast Care program (CBCP) and they would take it from there. But first, she would send me for an ultrasound. We discussed a mammogram, and I told her under no circumstances was I going for one, nor would I ever get one, she agreed a mammogram wasn’t the right thing at this point and said we’d see what was next after the ultrasound. She assured me I wouldn’t need to do a mammogram. In the meantime, she said someone from the CBCP was going to call me and they’ll arrange next steps. I left grateful for finding a new compassionate doctor and felt like I was in good hands.
On June 3rd I went in for an Ultrasound. The technician brought me into the room and started explaining the ultrasound process and said I would also be getting a mammogram. I told her I would not and if I had to sign something to make it so, I would. Without even looking at me, she said “okay but I need to tell you that a mammogram could save your life and you not doing it is not in your best interest”. I said, “look, I have a water balloon as a breast, I’m not letting any machine squeeze it”. She huffed and said okay, you need to sign here then. Her whole demeanor changed, she went from nice and calm to annoyed. Told me to get undressed and she would be back. I signed the form. When she returned, she opened up my gown and said “yeah, this is a large breast!” to which I said, yeah, now you see why I didn’t want a mammogram. She agreed. Now I was the one annoyed. The ultrasound wasn’t long and when it was done, she said she was going to talk to the doctor about it and would let me know next steps. Just as she was about to step out, she said, “I assume you want this thing aspirated, no?” I agreed, if it would make me more comfortable, I’d love the fluid to be drained. All my online research about breast cysts indicated that aspirating was often necessary and sometimes done more than once. I was okay with that until I could see a surgeon and get it removed. I knew from day one I would need a surgeon to remove the cyst most likely. What that looked like I had no idea, just knew there was no way out of that situation without some sort of surgery. When the tech came back, she said she had booked me for an aspiration the next day. I asked her if she had ever seen a breast cyst like this. Her response “in my entire career, not once have I seen a breast cyst this large”. This would become a consistent response as the months would go on from almost everyone I saw. There was no mention of any tumor or anything “concerning” other than the cyst on that Ultrasound report.
On June 4th I went back to the clinic for the aspiration. My appointment was at 9:00am and at 9:02am I was undressed and, on the bed, ready for the procedure. I was told they would insert a needle into the cyst and slowly aspirate (ie: drain) it. The ultrasound would guide the needle insertion. They froze me and began the procedure. Over the next 15 or 20 minutes they would drain 1.44 litres (48.6 ounces). Everyone, including me, was shocked at that amount. Almost 2 litres- that’s a pop bottle. YIKES! We actually laughed a bit at the absurdity of it. They put small bandages on me where the needle was, and I sat up. My breast was like a sack of skin, there was zero definition to it and there was no more bump or lump. They told me they’d send the amber colored fluid they removed off to Cytology and my doctor would get the results and connect with me to review. By 9:25am I left the clinic with my sister, and we laughed about how ridiculous my once giant breast looked compared to the sack of skin I was going home with. I even asked the doc if the definition would come back, I always considered myself to have larger breasts and to see the one so empty, I didn’t understand where the tissue went, how was this possible. I never did take a picture, it was the only time I didn’t, and I wish I had, I did take a picture though when I got home. The drive home was less than 20 minutes, by the time I got home, the fluid had reaccumulated and within the next day, I was back to bigger than my normal breast size. I prayed the fluid would stop and the worst of it would be over.
It was not.
I took a picture when I got home and the fluid had already filled me back up. Within a few hours of being home, I felt like a truck had hit me. I laid down on the couch and slept and spent the next 5 days in some of the worst pain I’ve had. I couldn’t lift my arm at all, I had to roll off the couch if I was laying down and I barely moved. The aspiration was on a Thursday. By Sunday, I was running or had broken a fever – I had woken in the middle of the night and had drenched my bed, my hair was soaked. When I woke up for the morning, I noticed a brown fluid bubble on my breast just above my nipple and a little bit aways from my bandage where they did the aspiration and was confused. Was that a blister? I put my finger on it, and it broke, a bunch of fluid came out and I had indeed blistered. But why? My bandage wasn’t near the blister, so the bandage didn’t cause it. Once the blister broke, my skin was UNHAPPY. I called Dr. Gafar’s office on Monday June 9th and asked to be seen asap. They got me in to see her that day
as a walk in patient only after I pleaded to see her. She was shocked to see that the fluid had come back, and I was MUCH bigger than I was previously. I asked to be referred to a surgeon.
She said she had referred me to the Comprehensive Breast Care Program, she asked if they had called me? I confirmed that they did, I had spoken to a lady named Diana, she knew I was going for the aspiration and said they would connect with me once my results came back. They also told me at any point I could call them, and they were there to support me, I never felt like they did…not ever. But I wanted to see a surgeon. Dr. Gafar swabbed my blister and put me on antibiotics. This would be the first of MANY rounds of antibiotics I would get over the summer. She said she would check in with me in a few days and once the results come back, we’d chat. I left feeling okay, the fever breaking on Sunday morning had lifted the fogginess and some of the pain in my arm so it was back to waiting on results. I got nowhere with the request to see a surgeon. I was in the “System” and had to go through the process.
That Thursday June 12, I got the cytology results online - Specimen A: Breast, Right, 12 o'clock 10 cm FN - Malignant.
Specimen B: Breast, Right, 12 o'clock 10 cm FN - Malignant. A and B: The specimens show numerous single scattered highly atypical cells with irregular hyperchromatic nucleus in a background of necrotic material.
On immunohistochemical staining these cells show positive staining with BEREP4, CK7 and CK19 and negative for GATA3, ER, CK20, CDX2 and TTF-1. The interpretation of immunostaining patterns are somewhat compromised by the highly degenerative nature of the tumor cells.
The morphological and immunohistochemical features are consistent with high-grade epithelial malignancy.
The tumour cells are not immunoreactive for GATA3 and ER, however the possibility of primary breast malignancy cannot be completely excluded.
Recommend clinical correlation/additional investigations and tissue biopsy for further evaluation.
I knew “malignant” anywhere on that report wasn’t good news. I put the results into ChatGPT and asked it to make it easier for me to understand. The easier to understand version went like: “The cytology report showed malignant epithelial cells with necrosis, which strongly suggests breast cancer – likely an aggressive type. The necrotic material points to rapidly dividing cancer cells outgrowing their blood supply, which often happens in high-grade malignancies. Commented that primary breast cancer could not be excluded, recommended for further tissue biopsy.”
This is not good news. Shit. I’ve already been told once that I had “cancer” and now I was going down that road again. I swore if I was ever diagnosed again, I would do EVERYTHING differently. I should have done everything differently after my last go-around, but here I was. And so, it started. The next day a nurse from the Comprehensive Breast Care program called. I would grow to despise these people but that day, she told me they had booked me in for another ultrasound and a mammogram and a biopsy. I told her no. I would do the ultrasound but the biopsy and the mammo were a hard no. The aspiration knocked me out and made it worse; they want to poke it again? And, by this time I had swollen so much, I was bigger than I was pre-aspiration. No squeezing me. She said she was sorry but that they needed me to do these things to get a better picture. I told her I wanted to see the surgeon. I told her I was carrying a sack of fluid the size of a small watermelon, I begged and pleaded, every time I talked to them, I cried. I was told nobody would physically see me until I did these procedures, they had a checklist, I must follow it. Frustrated, tired and beyond exhausted, I said I’ll do the ultrasound. I refuse to do the others. It was the first of many fights I’d have with the CBCP. They scheduled me for Wednesday June 18. It would also be the last day of my first round of antibiotics. I knew I had to shift gears rapidly. It was going to be my last weekend with “fun foods” and I prepared to do a total pivot on my lifestyle - time to get uncomfortable if I wanted to get my body back into a healthy state.
When I had first met with my doctor, she ran some blood work and my A1C was concerning, I was indeed pre-diabetic and that worried me (and her). I knew that sugar was a major contributor/instigator for cancer, so I had to make some drastic changes FAST. I wasn’t going down the medical route with this diagnosis (cancer or diabetes), I believe without a shadow of a doubt that our bodies can and do heal. I didn’t know if I had time on my side, but I was going to try – for me it was the only option. I wasn’t going to go down their “treatment route”, not if I didn’t have to. I dug into researching everything I could about self-healing. A big shift was coming.
That weekend was Fathers Day weekend and I had everyone come over for a BBQ – the Oilers were in the playoffs, and we set up my brother's 65” TV on my deck. As always, our family gatherings are chaotic and loud and fun. I was a mess though – I had received my cytology report the night before and didn’t fully understand, except to say I knew the diagnosis wasn’t good. My brain fog from the aspiration and infection the week prior was still very heavy and my ability to concentrate or tolerate any busyness was at zero. I didn’t watch much of the game (we lost anyways) and I wasn’t a great host.
On Wednesday June 18, I went for the second ultrasound. My mom came with me this time and when I arrived, they asked me to change into the pink (this drives me crazy – the pink stuff) anyways – I put on my pink gown and waited. Mom and I talked about how I was going to say no to the mammo and biopsy, what if they didn’t let me say no? I told her I’d just walk out. I wasn’t doing any of that until I could see and talk to a surgeon. A nurse calls my name; I stand up and walk towards her. She starts heading to the room with the big radiation symbol on it. I knew exactly what she thinks we’re doing first and I’m having none of it. I tell her, thanks but no thanks, I’m not doing a mammogram. She stops dead, looks at me, and says “what?” I repeat, “I’m not doing a mammogram. I’m sorry”. We’re still walking towards this room when she grabs my wrist and very sternly says to me “do you know what you have?” to which I respond, “I do! no thanks to anyone telling me”. It had been almost a week since my results had come back and my doctor, Dr. Gafar hadn’t called to tell me or book an appointment. So, I had googled my results and figured it out myself. I explained that to the nurse and as she still had my wrist in her hands, we walked into the radioactive room. I said to her “you can try all you want to convince me that I need a mammogram, I’m not doing it, we’ll have to agree to disagree” She said she wasn’t trying to convince me but I immediately reminded her she led me into that room and shut the door so I couldn’t leave easily. She opened the door quickly and said, it’s your choice. This could save your life. I told her “and it could end it, I’m not doing this”. I even explained my concern about squeezing a literal water balloon. What if my cyst ruptured? I said I’m not letting anyone squeeze this breast with 50lbs of pressure. She snapped back “It’s not 50 lbs of pressure” I said, “well it could be 2 lbs of pressure, I’m still not doing it”.
I’ll write another much shorter post on why I refused mammograms (and will continue to do so) and didn’t want any biopsies another day. But she let me go. I went and sat back down. Round one was over. Round two was coming up. A different lady calls my name, this time for the ultrasound guided biopsy. What I didn’t understand then, was that the ultrasound “guided” biopsy was a biopsy not an ultrasound AND a biopsy. I tell the tech that I’m not interested in the biopsy, I’m concerned about waking up a dragon and a needle puncturing my breast AGAIN. The last time that happened a few weeks prior, I was very very ill. And the cyst rapidly grew and that was just from a simple needle draining, not a needle puncturing anything and taking samples. She heard me out and said she would get the doctor to come and talk to me. Dr. Sam came in and asked what my concerns were. I repeated my concerns to him and he said unfortunately the surgeon will want the results of a biopsy before they agree to see me. I wasn’t sure who my surgeon was or if one had been assigned to me yet but I repeated again, I’d want to see him first. We asked if a PET scan or MRI would give them more info. He said no, it wouldn’t. I was prepared to pay out of pocket for this scan. Part of the concern was the cells tested in the fluid were epithelial in nature meaning I likely had an Adenocarcinoma like diagnosis (Carcinoma is cancer that forms in epithelial tissue. Epithelial tissue lines most of your organs, the internal passageways in your body (like your esophagus), and your skin.) so they needed the biopsy to confirm the type of cancer and rule out cancer anywhere else in my body. This made no sense to me, they could scan me and see if cancer showed up anywhere other than the breast – then send me off to a surgeon. My mom asked this question about additional scans beyond the Ultrasound, and the Dr. said those scans wouldn’t show anything the ultrasound didn’t show. Yes, but it would, it would show if I had cancer anywhere else or if it was isolated. That fell on deaf ears. He also said he would NOT drain the cyst that day because we already knew the fluid was malignant. Even though I was insanely uncomfortable and growing daily and was double the size I was earlier in the month, he said no further drainage that day. I said I’d have to think about the biopsy further. There is a LOT of research that says biopsies do much more than poke the bear and can make things worse. The needle aspiration absolutely did, I wasn’t confident a biopsy would help. So, they did another ultrasound to placate me and off I went.
When Dr. Sam issued the letter/report to my doctor, Dr. Gafar, the letter read: “The large fluid collection in the right breast which was aspirated June 5, 2025 with pathology of malignant/highly atypical cells have reaccumulated. There are indeterminate hypoechoic lesions in the right breast at 7N5 and 12N6 along the periphery of the large fluid collection. These are possibly cystic extension of the larger fluid collection (containing internal debris) or solid masses (although not spiculated). No other concerning masses are seen in the right breast. The option of biopsy of one of the hypoechoic lesion was was offered to the patient but was declined at this time. She wished to first discuss the results with her referring physician before proceeding with the biopsy. She was informed that workup at this point is incomplete, and biopsy can be arranged at her earliest convenience should she wish to proceed. The cause of malignant cells from the aspiration is still unclear, and could be a breast primary or metastatic from other unknown neoplasm.”
My understanding was that the cyst has lesions that were concerning. I was told they were like “fingers” in the cyst and those are what they wanted biopsied. This was a change from the initial ultrasound and nothing was mentioned after my first aspiration so I was confused. Was this why I was so sick after my aspiration? Did we poke the bear? I did ask this of another doctor I would see next and he said no, that the path would have been the same. I’m not sure I believe him. That Friday (June 20), I went to the River Cree Night Market. A company based in North Battleford that I love had a booth there. Neepsee Herbs and Medicines had been one of the first people I reached out to. I felt deep in my bones I needed to get some herbs and plant medicines in me. When I messaged them I was referred to a specific selection of herbs that could help me by Nikki the owner. That night, I met with the owner’s daughter Rae and she pointed me in the direction I needed. I picked up a blend of herbs and tinctures that you take religiously 4x a day until you’re in the clear, it provides lots of support to your body as it’s struggling with the mitochondrial dysfunction we call “cancer”. It’s now my “until I die” protocol - as in I’ll never not drink this tea (or at minimum take these herbs). I bought two months worth and a bunch of supporting items and decided I’d start the tea on “Monday”. Don’t we always start things on “Monday’s”? Old habits die very hard.
The following Thursday, June 26, I spoke again with a CBCP nurse named Chantal. They weren’t happy that I refused the biopsy and mammo and again I explained why. I pleaded to speak to a surgeon. I noted that the ultrasound doc last week, Dr. Sam had even put that in my report. She said I should go back to my GP and speak with her. I still hadn’t heard from Dr. Gafar. It had been 14 days since my results came in from the aspiration cytology and not a word from my docs office. I realize the onus is also on me to schedule, but the irony of this is, IF I hadn’t gone into my AHS account or known to, I wouldn’t have known the results had come back. She would have gotten them the next business day. She knew for two whole weeks that I was dealing with a potentially aggressive malignancy and had just finished a two week course of antibiotics and never once did her office call me – not even to check in. So I wasn’t super happy.
That weekend, one of my good friends Melanie was having a birthday party. I desperately wanted to go out with her and have fun. She was going to see a local artist and his band, and I thought I’d have the hutzpah to go. I felt awful, my hair was a mess so I wore one of my wigs and put on an all black outfit and off I went. I didn’t last long. I was miserable and a total party pooper. This cyst was getting increasingly worse, it had gotten so large, I couldn’t wear a bra or regular tops without them pulling over. My skin started to really stretch, and I was wildly uncomfortable. The cyst itself (the balloon part) had no sensation, it was the sides of my breast from stretching and the inside nerves that would rapid fire that sent me. I was super self-conscious and every look I got I assumed it was because of my overly large right side. I wasn’t in the mood to dance so I knew I had to leave. I got home and cried like I haven’t cried in years. I was upset with myself, I was scared, I was tired mostly and I was in pain. It took me hours to fall asleep that night.
It became a full time job to stay out of the “fear”.
On July 3rd I went to an appointment with a functional / integrative pharmacist named Frankie Ma, he owns the Medicine Shoppe in Meadowlark and had been recommended a long time ago by my Meditation Instructor. He had helped my sister with a health issue this year, so I knew he would have some ideas to help me (I hoped), and I knew the functional/integrative way was the only way for me at this point. We met for an hour and he asked me to come back the following week for another hour so we could continue our conversation. He had / has my entire health history going back to when I was a baby. First on the docket was to get my gut health in order. Years of steroids I didn’t need and antibiotics and my diet of heavily toxic chemicals (aspartame overdose for over 8 years, citric acid and pounds of sugar from gallons of pop, seed oils etc.) had without a doubt destroyed my gut. He recommended a parasite /stool sample test, which I agreed to do. It came back okay – a few minor things to work on but otherwise, clear of anything major. It’s hard spending tons of money on tests to find out nothing but we did get some info from that test that was helpful and would later be super important to help heal my gut. But there was no detectable parasites. At least none that they tested for. There is a growing body of evidence that cancer is a parasitic issue – for me at that moment we didn’t go down that road or treat for parasites, but it’s in my back pocket and it may still be part of my healing protocol going forward. My meetings with Frankie have been the biggest blessings and without him, I don’t know that I would have done as well through this entire thing as I have. We got to repairing my gut health with enzymes and probiotics, a GI cleanse followed by Magnesium Citrate supplementation. I was already taking Magnesium bi-Glycinate but we added the citrate. He had me on activated charcoal and acetyl-glutathione. We talked about the herbs I was on, and he approved of them all, and gave me a bunch of suggestions to help with the acidity in my body. My goal was to get the acid levels down and become more alkaline. Your body naturally balances the ph levels BUT if you live a mostly acidic lifestyle, it’s a struggle and a major pre-curser to many diseases. An acidic lifestyle includes a diet of mostly processed and packaged foods, fast food, seed oils, massive sugar and chemicals – this was me to a tee. By the time I saw Frankie I had started doing lemon shots in the morning (1 tsp of baking soda with the juice of 2 fresh lemons) and juicing cucumbers and drinking that throughout the day. He had me add Turmeric to that juice. He also recommended I hyper-ventilate every hour and then eat something super small like a spoonful of yogurt. This would help get oxygen to my cells. Cancer cells hate oxygen. Over the months every time I’ve met with Frankie I’ve learned more and got healthier. He seriously has been one of my biggest blessings.
((The pictures to the right were taken on July 2nd and July 8th respectively - the redness moon was getting worse and I was VERY full)) The first week of July one of the CBCP unit clerks Natasha had called me. She was the only person that exhibited real empathy. Every time these people would call me I’d get so angry and every call ended with me balling my eyes out in frustration. Natasha seemed different, she listened, and I believed she felt bad for me. I told her why I didn’t want a biopsy, I explained why I wanted to see a doctor, a surgeon first. I explained how the cyst was now double the size it was since the aspiration, and I had no relief in sight. I asked her how long I had to decide to do the biopsy. I was going to see my doctor on my birthday and would talk to her then, but after that, how long did I have to decide? Ultimately it was up to me, but we settled on July 10th as the day they would call me back and I’d make the decision. She was going on vacation but promised she would check in with me when she was back. She never did. Because the CBCP nurses kept asking if I had seen my doctor and I hadn’t, AND I wanted to talk to her about my fear around the biopsy, I made an appointment on my birthday, July 7 to see Dr. Gafar. I was going to Kelowna the week of July 14 with my sister so I made sure I saw her before I left. It had been just over a month since I first saw her, and I was down 12 lbs which felt amazing. I was feeling really good except for the cyst making me crabby but otherwise my joint pain was easing and I had a lot more energy, I was quite proud of myself. We talked about not getting the biopsy and I told her directly: “I DO NOT WANT A BIOPSY UNTIL I TALK TO A SURGEON”. She asked what my reservations were with the biopsy. I told her I didn’t trust the biopsy; I was worried it would make things worse and I pointed to the fact that I was MASSIVE - she was concerned about that. The aspiration wasn’t even a biopsy, and it kicked my ass for 2 weeks and the growth doubled in size in just a week. Looking back, had I not had it poked, I do wonder what would have happened. She said she understood and offered to write a letter to the Breast Surgeons office to speed things up. I was relieved, someone was listening finally – the CBCP nurses refused to help and just kept telling me until I did what they told me to do, nothing was going to happen. She also gave me another round of antibiotics – she thought with the constant swelling that antibiotics were the right move – so round 2 of antibiotics in a month, down the hatch. Dr. Gafar getting involved was a relief though, she apologized for not having the office call me earlier and sort of blamed the front desk. I was past the point of caring but accepted the apology. I left feeling like something might change and was hopeful. I knew the CBCP nurses were going to call in a couple of days, but I felt confident the letter Dr. Gafar was sending was going to help.
I was wrong.
On July 10th, the CBCP nurses called and wanted to know my decision. I asked if the letter my doctor had sent to them / my surgeon was received? She said they hadn’t gotten a letter. What?! How? Frustrated and feeling like I had no way out, I agreed to the biopsy to take place when I got home on Monday July 22nd. I hung up with them and called my doctor's office and spoke to the front desk. I explained the situation as calmly as I could and just asked if they could confirm the letter was sent. Maybe something happened. The lady at the front tells me to hold, she’s going to ask Dr. Gafar about it. When she comes back on the phone she tells me that “Dr. Gafar was waiting on you to make a decision about your biopsy before she sent the letter”. WHAT? NO! That makes no sense. If I had done the biopsy as they had wanted, I would have been tracked into seeing the surgeon anyways, I wouldn’t need a letter for that. What the hell? I was FURIOUS. Between talking to the CBCP nurse and then finding out my doctor didn’t send the letter she said she would AND turned the story around infuriated me. Even as I type this, I can feel the anger – I admit to coming unglued at that point. So, not only had she NOT called me to tell me my results, but she spun a story that didn’t even happen and did nothing to help.
When they say you have to be your own advocate, this is a MUST. You have to do the follow ups, you have to double check they’ll do what they say they’ll do. You HAVE to ask all the questions. YOU must do and ask for everything you want. Just no other way. They are simply too busy for any level of customer/patient service to exist. You have to call, follow up and make sure they follow through on what they say.
I went to Kelowna and tried my best to have a great week. Nothing fit, nothing was comfortable, my back hurt constantly. Being in the vehicle and hitting bumps in the road was wild, I couldn't walk far without major back pain. The cyst part itself on the surface never did hurt. You could touch it, push it, I felt nothing. It was the skin on the side and nerves inside and my back that was just brutal. My skin was so tight and the fluid had pushed my breast up into my shoulder, and I was tired. But we had a good time and spent way too much money at Planet Bee Honey apiary, and I was grateful to get away and be near water and trees and have a little bit of a distraction. (if you look at the middle pic below, you can see how much bigger my one breast was compared to the other)
Monday July 21 I went in for Biopsy #1. I was supposed to get a biopsy of the lesions in the cyst I was told. Two samples was all they needed. Oh, and they also wanted a lymph node biopsy. I refused the lymph biopsy. I told the tech there was zero reason for them to poke my lymph, nothing on the ultrasound showed as an issue and it seemed like it was unnecessary. She didn’t disagree and actually said to me that if she ruled the world, she would never do biopsies. That spoke volumes to me. I know that if I was her and said those words, that would have been the day I quit my job. How do you do a biopsy when you yourself know the harm they can cause?
My cyst was FULL and the doc agreed to gently aspirate it again before doing the biopsy. Releasing the pressure would help me just function but would also make the biopsy easier. Dr. Hyde took a good 30 or 40 minutes to drain 2 litres (68 ounces) of fluid. This barely dented the volume, but I went from being rock hard to squishy again so I was happy. They took the two samples from the lesion and cleaned me up. I was confused; they hadn’t done the lymph biopsy, but I wasn’t going to say anything. As they were doing the procedure I was talking about how frustrated I was with the process – the doctor said he was surprised at how much trouble I was having because we have the “gold standard of care” when it comes to breast health in Alberta. I told him the fights I had with nurses about mammograms and he said, “oh you couldn’t mammo this – that would be awful”. He had confirmed my thoughts. What a relief but also UGH! Standing up for your health should NEVER be a fight. You should never be made to feel guilty for turning down options. You should never get push back from the professionals for telling them no. He suggested that I would likely need to come back a few more times to get the cyst drained before I had surgery, that was common and he would make a note in the report that I could come back to do that as needed. He did mention it in his report, but I never did get a standing order, my doctor would need to follow up with that and we know how good she was at that. I had started to wonder if she was even getting these letters, I stopped at the front desk of the ultrasound clinic to ask and confirm that they were sending my reports to her – they said they were. Strange. My report was also sent to Dr. Peiris at the Breast Surgeon Oncology offices and we talked about him a bit. The ultrasound doc said he was an amazing surgeon, and I was lucky he was my surgeon. I’d be well looked after. I breathed a little bit that day and felt hopeful I was a bit closer to this being over.
When my report was published on July 29 - it read: “Technique: Ultrasound guided cyst aspiration. 2 L of fluid was aspirated. Incomplete aspiration of the cystic collection only to relieve symptoms. Some papillary extrusions from the wall of the cystic lesion documented. Pathology Findings: Specimen shows tumor diaphysis only rare degenerated pleomorphic cells are identified in the cell block sections showing enlarged hypochromic nuclei with coarse chromatin. These findings most likely represent high-grade carcinoma. Recommendations/Followup: The pathology from the fluid is very suggestive for malignant favor high-grade carcinoma. Awaiting biopsy results. Surgical consultation recommended.”
Now I know, some may read this and think “but a biopsy is going to help you – why are you so stubborn, why not listen to the professionals?”. When you know that biopsies make things worse, you try to stay away. How do I know they make things worse? This isn’t my first bat at the “Cancer” rodeo.
As I’m getting dressed, the tech comes out to me in the dressing room and says “Uh, Michelle we didn’t do your lymph biopsy” I noted that I noticed and intentionally didn’t say anything. She told me I had two options. I could go back in the room and they’d do it that day OR I could come back another day and do it. I asked her if what I did that day would get me to see a surgeon, she said absolutely! So I said I’m done – If they push back on the lymph biopsy I’ll come back. By the end of that night, the 2 litres they drained earlier had returned. Within a couple of days of the biopsy, the cyst turned BRIGHT red and looked inflamed, within a week of the biopsy, my skin started blistering, breaking and oozing and the cyst “popped” - I now had a large swollen breast and a second spot that was raised and angry that didn’t exist before (this is why the pictures will help). This wasn’t good. Fluid was seeping out of my skin and I was blowing through gauze pads like they were going out of style.
The long weekend in August was fast approaching and I didn’t feel like anything or anyone was going to help. I was waiting to get my biopsy results back, I was waiting to talk to a surgeon. Now my skin was breaking. And I don’t trust the doctor I have. And what would anyone do in emerg when I’m already in this process? Nothing I was certain.In the meantime, the nice ladies at CBCP had called because I didn’t do the lymph node biopsy. Turns out I can’t see a surgeon until I check ALL their boxes. I explained what my cyst looked like the best I could. I explained the uncomfortable-ness of it all. I explained that they drained 2 litres and didn’t even dent it, I explained that I did their stupid biopsy and was done – I explained that after the biopsy I got INFINITELY worse. I was inconsolable and the only thing I ever heard from them was “we’re sorry, you have to do this” “we’re sorry, you can’t see a surgeon until you do that” “I’m sorry” “I’m sorry” “I’m sorry”. NO YOU ARE NOT. At no point did anyone, Ultrasound doctor or any of these CBCP nurses mention the sheer size of the cyst in any of the reports (one report very
early on did reference a “melon sized growth” but after that and as it got worse, there was no mention, no mention of how uncomfortable I was, or how much I had pleaded to see a surgeon. No one asked for pictures, or suggested going to emerg. I was stone walled in their checklist. One Ultrasound doc (Dr. Hyde) did seem a bit more concerned and said I would need to come in for future drainage potentially – but left that to my GP to arrange. My doctor hadn’t called after my first biopsy, nor did she ever call when the results came in (again) – so I knew I was done with her. But the CBCP nurse said there was no choice, Lymph node biopsy or no surgeon – my decision. There was no decision, I had no choice. I told them I felt like I was being handcuffed, that nobody was listening at all – she said she was sorry and on August 5 with my skin seeping and blistering, I would go back in for the lymph node biopsy.But as the weekend came and went, it got worse. At one point I considered going to Emergency again, but for what? For them to bandage me up and tell me to
connect with CBCP to see what I should do next, there was no chance I was calling them – they did nothing but make my blood boil. I had lost faith in getting help and as gross as it was, I wasn’t in pain that made me scared (although I have a super high tolerance for pain, so that’s not always helpful). The sheer look of the growth would have sent anyone to emerge. I’m stubborn, I guess. The pain was the same nerve twitchy pain and the actual cyst/skin had no sensation whatsoever. I decided to tough it out over the long weekend and try to get in to see my doctor during the week after my biopsy. On Tuesday August 5th I went back to the Ultrasound clinic and got my lymph node biopsy done by Dr.
Holub. I was wearing 6 or 7 layers of gauze and I told the gals who were prepping me that I couldn’t remove the gauze because my skin was seeping so badly. They were okay with it and apologized for it getting so bad. I asked them at what point does the “Do no harm” clause kick in and someone looks at me and says “enough” this gal needs to see a surgeon.
She said she was sorry and then they did the biopsy. The doctor took 4 samples I think and when he pondered on taking the 5th I said, “you’re done, I’m done” no more. He said to the girls assisting “I think we have enough here for a good sample”. I was pissed and said if you don’t – too bad. I’m done. I couldn’t get out of there fast enough. He also said nothing about the way my breast looked, nor was it noted in any of his reports in a way that would garner any concern. My biopsy results of the lymph node read: “Biopsy of the right axillary node with thickened cortex demonstrates reactive lymphoid tissue. Several needle passes were obtained through this cortex. This may be concordant but given known adenocarcinoma in the breast, rebiopsy may be required to confirm this pathology and lack of metastatic adenocarcinoma depending on clinical concern. This has not been booked.”
Essentially this means that the sample showed reactive lymphoid tissue, which means the lymph node looks like it’s reacting to something (like inflammation or infection - ya think?!), but no cancer was seen in that sample. This result might fit (“may be concordant”) with what they expect — but because the person already has known breast adenocarcinoma (a type of breast cancer), the doctors want to be extra sure that there’s truly no cancer spread to that lymph node. Therefore, the report says that a repeat biopsy might be needed to confirm there’s really no cancer there — especially if the doctors are still concerned.
No mention of what the cyst was doing, no mention that it was blistering and my skin breaking, no mention of the wound on the outside. Just a recommendation that further biopsies might be needed - because what I was diagnosed with and how my lymph was responding wasn’t “linking up”. The morning after my lymph biopsy I woke up and knew I couldn’t wait to see a doctor. The ultrasound doc wasn’t bothered at all by how I looked but it was awful. Looking back, I’m not even sure anyone ever actually “Looked” at me. I was just a body, getting a procedure, in and out. I called Dr. Gafar’s office. She couldn’t see me till the end of August / early September. I lost it. I have a cyst that is breaking through my skin, it has blistered, it’s likely infected and it’s BEYOND inflamed. I pleaded with them to get me in to see any doctor. A male doctor, Dr. Raoubi was available at 10:30am. It was 10:00am – could I come now? I told them I was on my way. Dr. Raoubi comes in and introduces himself. Asks me why I’m there as he’s reading my chart and says “are you aware of what’s going on?” I say, well yes, Chat GPT has explained my results to me. My cytology report from the fluid in June and my biopsy report both were explained to me by Chat GPT so I could understand them because Dr. Gafar has yet to meet me about any of it. He apologized profusely and said that should never have happened. He was horrified with what I had experienced and when I took the gauze off so he could see, he was irate!
He asked me who my surgeon was. I told him I think it’s Dr. Peiris because he’s the doctor my reports are going to, but I don’t know, I haven’t met with anyone. WHAT?! He tells me I should have seen a surgeon weeks ago with a cyst that looks like this. I tell him I asked Dr. Gafar to get me into a surgeon to no avail. I explain that I’ve had two biopsies (the first one instigated this broken skin chaos) and no one has said anything or pushed me through. He says “lucky for you, today is a slow day, I’ll be right back”. He leaves and when he returns, he tells me he tried to call the CBCP to get me in to see a surgeon immediately. He wasn’t able to reach them when I was there but promised me he would have an answer for me and an appointment made by the end of the day.
Instant relief.
FINALLY someone was listening. I drove home feeling hopeful for the first time in months. I called my “magic” support number of the CBCP crew to see if this doctor had gotten a hold of them (when I became a patient of the CBCP, they gave me a number I could use as their patient in case I ever needed support – ridiculous). He had and they were scrambling. I was told they were working with Chelsea at the surgeon's office to get me an appointment as soon as possible and I would hear from Chelsea shortly. FINALLY. I cried. And then my clinic called to tell me this doctor had gotten through and I would hear something soon – I confirmed the Breast Surgeon’s office was calling me and needed to grab the call. I hung up and took the incoming call worried I would miss it. Chelsea from Dr. Lesniak’s office was calling to schedule me in to see him. Dr. Lesniak? Who the hell is that? She explains he’s the surgeon assigned to my case. No, Dr. Peiris is my surgeon I tell her. Nooo, she says, and goes on to explain that Dr. Peiris is the lead of the Comprehensive Breast Care Program (CBCP) and his name goes on ALL the results / letters. Dr. Peiris is one of their surgeons but when you get to the surgeons office, they que you based on avail etc. I was so done with inconsistent messaging etc. that this threw me. I was livid. Why wouldn’t they explain that to people? Maybe people don’t care, but I am an information person, and when things change like that, it’s a struggle bus I will admit. And I was tired so it didn't take much to tip me off.
Chelsea was an absolute angel. I was sobbing on the phone with her, both out of relief and frustration. I spewed the entire story of how I got there to her, and she was the most compassionate, empathetic person I had talked to at that point. Her energy was instantly calming (where the others I had talked to were not) and when she said she was sorry, I actually believed her. She was doing her best to shuffle schedules. The problem was we needed that lymph node biopsy to come in first. I didn’t care and couldn’t understand why we needed that, we knew I had a carcinoma, we knew it was aggressive, we knew my skin was blistering and breaking – why wait? Well, because we have to follow the process for EVERYONE. This was a Wednesday I talked to Chelsea; she was booking me for the following Thursday which felt like an eternity away. I pleaded for it to be earlier; she didn’t have it. I said I would come in under a cancellation – can I be put on a list? I was begging and I didn’t care. She hesitated slightly and said I could and she would call me if anything came up, and I settled with the following Thursday as my meet the surgeon day. A few minutes later, she called back, and a cancellation had come in for 8am on Tuesday morning. The first of many random blessings - I’ll take it. BUT she said, the lymph results would need to be back in on Friday or Monday. So I had two appointments – Tuesday if the results were back and if not, for sure Thursday. Relief was coming. That same day I went looking for a new GP. The clinic I was going to had another female doctor who was also accepting new patients – I booked an appointment with her for Saturday. I had a bunch of questions for her and if she didn’t answer them to my satisfaction, my search would continue. Maybe I’d request to become a patient with the male doctor who had gotten me into the surgeon’s office. Friday afternoon at 3pm I checked my AHS files and the lymph biopsy had come back. It was clear and I was going to see the surgeon FINALLY on Tuesday.
Saturday morning I met with Dr. Riany at Asperia Medical Clinic. I told her my story, how I hadn’t been followed up with, how I was floating around without any support, how I had no luck with the CBCP nurses and Dr. Gafar. She was horrified. She apologized profusely and said that would have NEVER happened with her. She spent a bunch of time with me, never rushed me and was very empathetic. She asked if she could also write a letter to the CBCP – I of course said I would be happy if she did. She agreed to take me on as a patient and said I would never be left hanging ever again. She swabbed my wound for testing and gave me my 3rd dose of antibiotics and I left feeling like I finally had a doctor I could trust. I was trying so hard to trust someone – I was reassured for the moment she would help, I had to take a chance, again. She told me that if I didn’t see the surgeon on Tuesday as planned, that I was to call her immediately. I assured her that I was going to call the surgeon’s office on Monday and make sure my appointment on Tuesday was going to stick. She would hear from me if not. A week later, after I saw the surgeon and 7 days into my antibiotics she called me herself to see how things were going and asked for an update. Grateful was the only word I had that day for her. She has since followed up several times and post surgery I saw her and she offered her support going forwards whatever I decided.
The Surgeon
My appointment had been tentatively scheduled for Tuesday August 12, I woke up Monday morning and called Chelsea to confirm. She confirmed, they would see me on Tuesday at 8:00am. Relief. And fear.
My mom came over the night before and very early we headed to the Surgeon’s office. The office didn’t open physically till 8:00am so as we waited for them to open the doors, I wondered if I was the only early appointment as not many people were lingering outside. I had to fill out some forms and was told they’d get me in a room shortly. It was 8:20 or so and not a soul was in that office except me. I wondered – did they put me in much earlier than they opened, to squeeze me in? I never did ask but assumed this was the case. Mom and I were moved to a room to wait for Dr. Lesniak. I had googled him the weekend before and had read his bio on the Alberta Breast Surgical Oncology website. I knew what to expect more or less (or so I thought) and just tried to breathe as we waited for him. Having learned that Dr. Peiris was NOT my surgeon even though his name was on all my results, etc. and having lost trust in my GP Dr. Gafar, I was hoping and expecting that everything going forwards would go smoothly.
Dr. Lesniak was by all accounts a great surgeon and had the credentials. “Dr. Lesniak is a board certified General Surgeon, Fellowship Trained Oncoplastic & Reconstructive Breast Surgeon, and an Assistant Professor of Surgery at the University of Alberta. His expertise includes management of benign and malignant disease of the breast, including reconstructive breast surgery.
He completed Medical School and General Surgery residency at the University of Alberta in Edmonton, followed by a fellowship at the Paris Breast Centre/ L'Institut du Sein-in Paris, France. Dr. Lesniak offers a full range of oncoplastic breast surgery.
I had tried to find everything I could about him. That’s the researcher in me. I found a few podcasts he had done for University students and he talked about his training in Paris and how he wanted to bring that standard to Canada, a standard we don’t yet have. I knew I was in good hands, I prayed he would agree I needed surgery and would book me in as soon as possible.
I don’t ever put any weight on race ever but I was expecting a tall, Caucasian male and when we heard the knock on the door and a short Nigerian doctor walked in, I immediately said “You are not Dr. Lesniak” with a decent amount of attitude and he quickly said no, he was an intern or resident (I can’t remember) and was going to get some health history from me if that was okay. I had to quickly calm myself down, for a brief second I was sure I had been told one thing and yet another thing was happening – but alas, I jumped to conclusions which is never a good thing – my nerves shot by this time, it was my honest reaction and not one I’m proud of at all. This doctor had a look at my cyst/breast, my makeshift gauze bandage being removed so he could see. He didn’t even flinch. He had a look and then proceeded to ask me a ton of questions, the usual health history – did I have family who had cancer, had I ever had any surgeries, you know, all the stuff they can see on my online chart but that you have to repeat at every doctor you go to. It’s really too bad our charts just don’t offer summaries to the doctors. I had answered this question so many times the last little bit, I was able to riff off everything from memory. He thanked me and said he was going to go chat with Dr. Lesniak and they would be back in to discuss the plan with me. Thank god. I was momentarily re-assured by how cool and collected he was. Maybe what I was experiencing they had seen many times before - he had no reaction. That has to be a good thing.
I had prayed for this appointment for 2.5 months. The intern doctor came back in first, followed by the tall doctor I was expecting, although he did look a lot different than his picture with scruff and glasses, but he WAS tall. They walk in and Dr. Lesniak introduces himself. He proceeds to “let’s have a look”, I pull down my shifty barely holding on gauze bandage and he looks. Immediately says “this is bad, this is really bad!”. To which I sighed and said “I’ve been trying to see you for 2.5 months”, his response: “This is the first I’ve even heard of you”. This confused me immediately. All my reports, results etc. were coming to Dr. Peiris who I realized wasn’t my doctor, but if he wasn’t looking at them, was anyone? Turns out no. That’s not how the system works sadly. The Comprehensive Breast Care program manages the “Checklist” , a cookie cutter approach to how every woman in the Edmonton (& respectively Calgary area with different docs) region gets a diagnosis when it comes to breast health. The nurses at the CBCP book your scans, biopsies and are there to support you etc. and once you’re done to their satisfaction, they send your chart to the Breast Surgeon Oncology Office. There are 3 surgeons based in Edmonton who do all the surgeries for northern Alberta (specific to Oncology related diagnosis). Once you complete this list, you are then referred to the surgeon’s office where the gals in the office work through the requests and book accordingly. Usually it’s 4-6 weeks before you’ll get in to see a surgeon, another 4-8 weeks before you’re booked for surgery and that is almost ALWAYS once you’re done your neoadjuvant treatment FIRST.
So, it looks like this: You finish scans, biopsies etc. The Breast Surgeon Oncology gets the “go-ahead” from the Comprehensive Breast Care program team. You’re triaged into one of three surgeon’s schedules. Once you have your consultation, the next step is almost always a consultation with the Oncologist at the Cross Cancer Institute based on discussions during “rounds” that they do every Wednesday afternoon. If the team decides to do treatment first, you are referred to the Cross Cancer for the Oncology consult, they’ll then tell you what they recommend for treatment. This varies obviously, but for my type of diagnosis, the recommendation is often 4-6 rounds of chemo. Each person is very different. In my case it would have been potentially 6 rounds of 5 potential chemo drugs plus all the side effect meds. Once you’re done with all this treatment, and your tumor hopefully decimated, you will be scheduled for surgery generally one month after your last treatment. Surgery is a mastectomy, a lumpectomy, or either or and a reconstruction/conservation approach at the same time if possible. Then, it’s usually recommended to do some form of radiation post surgery. Of course, not everyone goes through this, but in my case and many with my diagnosis, this is the track. To say your body takes an absolute BEATING in this process is an understatement.
I had 21 rounds of radiation in 2015 due to a non-Hodgkin's diagnosis of a tumor sitting just above my kidney. My kidney at the time was more than healthy, so much so that they didn’t want to even consider surgery, it would have been too invasive I was told, and it was repeated over and over that my kidney was healthy and it was not the issue. Back then, I didn’t even question the process and did the biopsy without question, I did all the scans and tests. I only found this tumor by accident; it was picked up on a scan looking for other potential issues. The doctors at the time opted to “wait and watch”. Turns out they believed I was too unhealthy to withstand any conventional treatment. A year after my biopsy, I went for a follow up scan and learned the tumor had grown at least double in size. Infuriated that we waited and watched, I pushed to get it fixed. Originally, they considered chemo and settled on 21 rounds of radiation. I was positive I got the “easy route” turns out – it was anything but. I was beyond sick the entire time. I was on different anti-nausea pills and when the brain fog set in, it was in for a long time (took over 2 years to feel “normal”). The radiation worked by all accounts and I was considered “Cancer Free”. The next 5 years we monitored and everything was good and I was released from the Cross as no longer needing any support. It was a MAJOR relief.
No one ever told me that my kidney might be harmed during radiation, no one ever told me that a biopsy could release a ticking time bomb. No one told me radiation can cause cancer or other major issues. No one told me that the foods I eat could be causing the issue. This was before I went to school to study nutrition. I went to school to study because of my experience back then. And my eyes were forever opened. So this round, I knew I was going to do things differently. I have long said since my radiation treatments, that if I was ever diagnosed again, there was no way I was going to do conventional treatments. I had watched those same treatments kill many. Yes, many people do live and have success but almost always the “C” comes back and the 2nd time of treatments usually is enough to end it all. If I was ever diagnosed again, I had decided that I would take quality of life over quantity and live as long as I could without medical treatments. If it was/is my time to go, treatments or not, I’d be exiting stage left.
So the questions, the hesitations, the push back this round wasn’t because I was being difficult. I was leaning on previous experience and my own research and knowledge AND more importantly my gut intuition.
Back to Dr. Lesniak. After our initial interaction of pure shock, he said he wasn’t sure he could even operate, he was sorry I wasn’t seen sooner but suggested since I was there now,
we just move forward – I agreed. But my skin was so swollen and inflamed, he didn’t think there would be any viable skin to work with. It was worse than I thought. I knew it was bad…but it was BAD. He immediately said I would likely need to do chemo, possibly radiation. I instantly reacted and said “I’m not doing Chemo”. He looked me dead in the face, there were 4 people in that room but at this moment it felt like just me and him and he said “Then this WILL kill you”. It was so jarring I didn’t respond at all. He was blunt and beyond serious. I just looked down to my lap and listened as he continued talking. Those words echoing in my mind non stop. I think he realized as quickly as he said it how jarring it was and he continued saying “You have a very aggressive form of Triple Negative Breast Cancer”. This was the FIRST time I had
heard that. Because no one had ever connected with me or explained my results (note: this is your GP’s job) and I didn't put my biopsy results into ChatGPT for the last biopsy so I had no clue. When I had looked at my biopsy report it said: BIOMARKER RESULTS (IHC) for invasive carcinoma ER NEGATIVE (0) No staining, (0%) PR NEGATIVE (0) No staining, (0%) HER2 NEGATIVE (1+). To me that was all good news. Turns out no – that means it’s not responsive to any hormones and is one of, if not the most aggressive form of Breast Cancer and the toughest to treat, and one that often tends to reoccur often. I was considered “Grade 3” whatever that meant. I didn’t know if that was the same as the staging or not. I looked at my mom, her eyes welling up and something in me clicked. I wasn’t going to hear any of it. I wanted surgery, I wanted this thing removed and I wanted to keep healing. I continued listening to Dr. Lesniak as he explained what surgery would look like, how he’d have to potentially take skin from my back – called a Backflap or maybe my abdomen but he preferred to leave the abdomen intact
until reconstruction. I didn’t care about and still don’t care about reconstruction, if he needed to use my stomach tissue, he could use it. Whatever I needed to get this thing off me. He said they would discuss my case in rounds – because it was Tuesday and rounds happen on Wednesdays, it was too late to get my case looked at the next day, but he assured me he was going to call the Oncology team urgently as soon as we were done and I would be discussed the following week. He said if the Oncology team agreed or suggested surgery first, he would do it but he didn’t think that would happen. I prayed he was wrong. He briefly explained the process of chemo, how many potential rounds I may need and when surgery would be. I would need to potentially do 6 rounds of chemo – once every three weeks for the next 4 or 5 months he thought. One month after the last treatment, he would do the mastectomy. There was likely no other option. They needed the tumor to shrink. The tumor? What tumor?. I knew I had lesions in my cyst - I was told they were like little fingers. I was never told that a massive tumor was under the cyst. So many things were never explained to me, so in this meeting with him, I was being hit hard with facts and had little to no time to process the actual gravity.
In the meantime, he was ordering and sending me for a bunch of tests. A CT scan was FINALLY ordered. A bone scan was set up for the next day immediately after a drain was going to be put in that I would need to keep in until after chemo. This drain would release the fluid build up so I no longer needed additional aspirations. I was also sent for blood work to confirm I could withstand the radiation injection of the bone scan and a genetic blood test for the BRCA mutation was ordered. I did all the blood work immediately after leaving his office. Chelsea had “tentatively” booked me for surgery on September 4. This was a “hold the date” and would only be confirmed if the “team” agreed I needed surgery first. Dr. Lesniak took pictures of my breast, it felt a bit like I was in a photo line up and getting a mug shot. He assured me my face wasn’t in the pics but that the pictures would help the oncology team when they discussed me. I had zero issues with this – I had been taking my own pictures because it was all so unbelievable and I was happy someone FINALLY was doing something - ANYTHING. We had a plan – lots in the air but I had seen him finally and in a total state of shock, I met with Chelsea in person after my chat with Dr. Lesniak. She helped line up all these appointments, it all felt super fast and was a bit of a blur. I was okay that day – holding it together, didn’t get emotional, just rolling through the process.
A couple of days later, I wasn’t so strong.
That afternoon, I called Theresa to tell her about the appointment. When I met with Dr. Lesniak he had asked me if I had any nipple discharge and as large as my breast was, I hadn’t at all. The oozing/seeping was all from up high where the skin had broken. During my call with Theresa, I noticed my shirt was wet, I thought my gauze had moved and my shirt was picking up the seeping. Until I realized that no, the gauze was still very much intact, I was now getting discharge from my nipple. Shit. That afternoon, I was scared.
The next day Wednesday August 13 - I was at the Misericordia Hospital checking in for my drain procedure. I was down 21lbs which felt incredible and I decided to weigh myself before going, I knew they would drain the cyst so I wanted to see how much difference in weight that would be. They would insert a tube into my breast and I would be able to drain 1.5 litres daily if I needed to. When they put the drain in, they released all the fluid first.
Originally the nurses started with large syringes. Realizing it would take 100 of those, they used chest fluid bottles. Each bottle held 1 litre (32 oz) of fluid. By the time they were done, they had filled 5.5 bottles. So, 5.5 litres (186 ounces) of fluid was removed from my right breast. It weighed just over 13lbs (5.9kg). I felt so good having a somewhat normal sized breast again. My nipple never had any discharge after the initial drain either, which was a relief honestly. They taught me how to release the drain and they attached a bag like you get with a catheter or folly and I hurried over to the Ultrasound clinic again – this time for a bone scan. I wasn’t happy about getting this scan, the tech carries the injection in a metal tube – if he dropped it and the syringe broke, it would be a hazmat nightmare. I had to get this injected, find something to do for a few hours and then come back for the scan. We did just that. I had to fast for
the drain procedure and by the time I was getting the radioactive injection I was HUNGRY and my body was in a bit of shock losing 5.5 litres of fluid. The injection made me wonky – we came home and I ran to the fridge and instantly chugged some orange juice. I had the shakes and was very woozy.I had texted Frankie the day I met with Dr. Lesniak and asked him what I could do to help purge this radioactive stuff out of my body after the scan. He gave me a protocol to follow and once the scan was done, I did exactly what he suggested and within a day I was feeling good again and was confident the radioactive stuff was mostly gone. There was a sign in the clinic that said if you were flying anywhere to ask for a letter because at the airport, you would be flagged as radioactive. INSANE that we put this stuff inside us and don’t think there are repercussions. It’s kinda wild.
The rest of the week was a relief. I spent the Wednesday after this test and drain stuff just chilling at home. Thursday, I worked like normal, but the calls for appointments etc were coming in fast! The nurses at the CBCP called to check in on Friday. I lost it on them. I was infuriated with the whole process. I was mad that after all the begging to be seen, I was now in a situation that was and felt nearly impossible. I wasn’t willing to talk to them anymore.Then someone from the Cross Cancer called to schedule a Muga scan. I wanted just one day off from all the things. I was SO grateful things were moving but it’s a LOT and it’s overwhelming. Tests here and there, doc appointments non stop. Why did I need a Muga scan? Well, it’s another scan where they inject you with a radioactive dye, you lay on a bed for an hour and the scan monitors your heart, how it beats and how your blood flows through the valves. It gives the Oncology team a base point of how well your heart is working (or not). When you start doing chemo, it can affect your heart, knowing how it works before the chemo is why they do this. Terrifying. I did NOT want this and wasn’t happy about being scheduled for this.So first the CBCP nurse calls and gets me irritated, then the Cross calls and I’m ready to tap out. Then Chelsea called. Bless her, something about her just instantly calms me. Maybe because she feels genuine in her care for people, maybe because her demeanor is just so calming. I told her how frustrated I was with all the calls. I told her I refused to talk to the CBCP ever again and all appointment confirmations etc. I wanted to come from her if that was possible. She said that was and I sobbed. I talked her ear off. I told her how hard it was to hear Dr. Lesniak tell me this was going to kill me if I didn’t do chemo. I’m all for brutal honesty but having been so exhausted after begging to see him for months and then that was his delivery, I was actually mad at him. It took me 3 days to process that appointment and when I did I was out of my mind. We agreed he was likely very shocked and she said he’s never like that – so she was surprised by my experience. I wasn’t offended he said it that way – I was just sad. I felt totally defeated and instead of him saying “this would kill me” in response to my refusal for chemo, he could have easily said “okay, chemo has come a long way, what is your reservation with it?” or “chemo is the best way to deal with this, if not the outcome isn’t great for your diagnosis” Anything but what he said. I didn't even know what I had until 2 seconds before he told me it would kill me. It was a lot. I think I was most bothered because I didn’t know my diagnosis. I didn’t know how bad it was (it looked bad, sure – I didn’t realize it was more than an Adenocarcinoma, or at minimum I KNEW I had cancer but I felt like it could easily be managed) – I didn’t know it was aggressive (although that should have been obvious - I assumed my skin breaking was from the swelling, not actual cancer per se). We learned all of that in the 10 minutes after he told me this would kill me. It was a lot. He wouldn’t have known any of that though, he would have assumed I knew what I was dealing with.
By the time most people see him, their GP’s have reviewed their results with them. That didn’t happen for me. At one point in the meeting with him, my mom asked him “have you ever seen anything like this before? A breast this big like this?” as he was putting on gloves to look closer, he said to her “no, never in my career, this one takes the cake”. I took a deep breath and decided right then and there, this wasn’t the end, I wasn’t going to surrender to this thing. I wasn’t going to fight it either. I was going to move through the motions, make very calculated decisions and I WAS going to get through this. When you fight or battle there is a level of resistance. I didn’t want to fight. I just wanted to be kind to my body, help it heal and get through it with as much grace as I could. Chelsea did everything she could to listen and assure me he was a great surgeon. Of that I had no doubt, I just wished the initial meeting we had would have been a bit less chaotic feeling. But I didn’t really like him that day if I’m being honest. I didn’t know him at all and my life was in his hands and our initial interaction was nothing but shock, concern and what felt like a bit of chaos. I had to find a way to trust him, I had to surrender that he was my surgeon for a reason and that I would be okay. And if I wasn’t okay, I would have to be okay with that too. I hung up with her and balled my eyes out. It was the hardest I had cried up to that point and it was like everything over the last two months just came to a complete head and it felt impossible. I composed myself and called my mom. I couldn’t even talk. I was ruminating on every conversation I had, on every appointment, on Dr. Lesniak’s reaction. Why hadn’t anyone said anything about me sooner? How did it get this bad? My mom came over that night and spent a few hours with me as I tried to calm down. Even writing this now, it’s the only point I’ve gotten emotional telling so far. It was a HEAVY day and all I had wanted was one day without someone calling, instead I got to the point I was beyond overwhelmed. I wasn’t ever “scared” per se. I was overwhelmed, frustrated, worried about my family and my brother, my dogs. I was mad at myself for letting my health get to this point (this is 100% on me – more on that another time). Scared wasn’t a word I would use, then or now, but frustrated and angry were definitely words I resonated with. Neither are good for stress levels or healing. I spent a good amount of time talking to my parents about my choice of not wanting to do chemo. That’s not an easy conversation. Many will tell you (and many did) that chemo might be my only option, that I needed to consider it. Some even told me to do exactly what the doctors told me to. I had done this before – I didn’t trust this. I joined a bunch of facebook groups – Triple Negative Breast Cancer groups and I posted asking if anyone had ever had a cyst as large as mine – no one. In fact a few reached out to me and asked me to seriously consider chemo, it had changed and was good now. Yet, nearly every comment was about women who had and were dealing with debilitating side effects many years out, they were literally struggling with their health but grateful to the chemo and couldn’t see the chemo was the reason their health was in decline. They were alive but felt like shit. No thanks. It was going to be a tough sell for me. One of the chemo medications common for TNBC the women in these groups “lovingly” refer to as “The Red Devil” because it’s red apparently and brutal. Yeah – nothing about that made me run towards it.I was worried it would be my only option, however – if he wasn’t going to do surgery first, how do I stop this thing? How do I do chemo with a massive wound on my chest? I believe in and still do believe in all the holistic things I’m doing and I know they were helping but the cyst was going rogue very fast – I didn’t think healing myself was going to happen without some major intervention. It was too far gone at this stage and aggravated by the biopsies, I was running out of time.
I started to play with the idea of losing my hair - this didn’t bother me like it might others – I often wear wigs anyways so I started looking at options I would tap into for hair. As the week went on waiting for Dr. Lesniak and the team to discuss my case, I attempted to try and make chemo “my friend”. I knew that if I didn’t trust the treatment, it wouldn’t help me. I knew I had to get right with the idea, change my thinking and trust that it was in my best interest, and it would be healing. THIS was a tough conversation to have with myself. I inherently don’t trust chemo and have said for years I would NEVER do it. To be looking down the barrel as it being your only option is overwhelming and very difficult.
For the record, I never did make it my friend.
Homecare became a weekly / every couple of days thing once I was on the drain and my first two nurses / case managers were named Christine. They were the sweetest people. They were very interested in what I was doing holistically and with my functional/integrative pharmacist. They were stunned I wasn’t going for surgery first. They couldn’t understand. It was nice to have them reaffirm my thoughts without my asking or prompting, they told me to keep advocating for myself and were impressed with my attitude and feistiness. They were bright bright lights in my days when they came. Every homecare nurse I had was absolutely amazing – they are a special type of human and I was lucky to have incredible ones.
On Monday August 18 I sent updated photos to Chelsea/Dr. Lesniak. The skin that had stretched looked like a large black scab. The home care nurses had asked Dr. Lesniak if I should be scheduled for a debridement (they’d have to surgically scrape off that scab) or hydrotherapy it (where they would push fluid under the scab and it would eventually “melt” off. Both very gross processes and healing would take months. The black scab wasn’t a scab like when you scrape your knee. It was necrotic dying skin. Only surgical intervention would make it disappear. It would come off during the mastectomy, but I had to first agree to Chemo with a necrotic wound if they suggested chemo first.
That same day, Chelsea called me to see if I was aware of an appointment that had been made for me the next Monday. I told her no, I hadn’t heard from anyone yet. She explained that I was being scheduled for an ultrasound guided clip insertion.
A what?! She explained that with an ultrasound, they would insert a clip, a metal clip that is super small into the tumor. This is in preparation for chemo, as the chemo does its thing and the tumor shrinks or disappears, the clip remains; this helps Dr. Lesniak when he does surgery to see where the tumor was so he can clear the margins around that area. I question EVERYTHING obviously and instantly asked why I needed this. She explained it briefly again and I said “no, I get that but why do I need it? This makes no sense…I’m getting a mastectomy no?” She said “yes, you are, that’s right”. So why do I need a clip when in the end the entire breast is coming off? The clip is used during lumpectomies. And clearly in most cases as I’m sure most breast cancer patients get this clip regardless of their surgery in the end. But I wasn’t having it. I was so tired of being poked after I pleaded to not be. This was one more poking the bear procedure and for what? Every biopsy / poke I had gotten made things worse, now I have a major wound on my breast and they want to poke me again. Not happening. Chelsea cancelled that appointment for me.
On Thursday August 21, I was scheduled to receive a call from Dr. Lesniak once he was done with surgery for the day. It would be after 5pm most likely so I lingered around waiting for him to call. When he did, he confirmed that the oncology team and he had met the day before to discuss my case. They agreed that I should do chemo (neoadjuvant) treatment first, followed by surgery. I was anything but happy. I asked about the open wound and asked how they expected me to do chemo with that? He said that was a good question and one I could ask when I spoke to the Oncologist at my appointment on September 3rd (two weeks away). I asked if my drain would stay in for the duration of chemo. He said it would.
So I was looking at an open wound that was still seeping on my still very swollen, inflamed breast, chemo that knocks your immune system down to zero, hair loss and all the side effects that come with chemo AND then when that’s all done, a month after treatment, they would book me in for surgery. I knew this call would be like this – I wasn’t at all surprised. Now, I’d have to wait two weeks to talk to the Oncologist and see what they said. There was no other option it seemed. I wasn't going to get a say in the matter. That night, I was getting ready for a shower. The previous nights I had wrapped myself in saran wrap and was irritated by that, and the nurses said I could let water run over the wound so long as it wasn’t submerged. So I decided no saran wrap, I would wrap my drain to protect it but the wound would be exposed and I would have a decent shower. I removed my padding to protect the wound and had a peek in the mirror. OH NO. The scab had moved inwards and I now had a GAPING hole. A hole in this wound that looked deep. No way could I put water on this. I
wrapped back up and sponge bathed. This wasn’t good. I sent a text to my sister with a picture – it was late at night and she immediately suggested we go to the ER. For what I told her? For them to tell me to check in with my GP? I just knew there wasn’t anything they’d do except bandage me up better and ask me to check in with the surgeon or my GP the next day. I wasn't going to waste time sitting in the ER for nothing. I took some Motrin for my back pain and went to bed.
I called home care who weren't scheduled to come for another couple of days. AND I saw Dr. Riany, my GP. She swabbed the holes in the wound and sent them off for testing to see if there was an infection and gave me my 4th round of antibiotics. Homecare was ordered by Dr. Lesniak to come every single day that weekend. They posted pictures to my Connect Care file and updated Dr. Lesniak. As the weekend progressed, the wound just got worse. On Saturday, a nurse had come by to help me clean it up. She used a q-tip thing they have and it has measurements on the stick. She was able to go 10+cm deep in one of the holes and could have kept going. I felt nothing but was so grossed out. She was a bit too. They communicated daily with Dr. Lesniak on how to treat this thing and the instructions were to keep it clean and protected. The nurses couldn’t understand why I wasn’t being scheduled for surgery. Everyone wondered that.
On Wednesday August 27 I was supposed to go for my Muga scan. I would need to lay on this bed for 1 hour while the scan did its thing. I wasn’t sure I could do it with all the padding I was wearing to protect the seeping fluid. On Monday August 25 when I woke up to change my padding, as I was taking it all off, a gush of fluid came out of the cyst wound. Not my drain. My drain had all but stopped the last few days and the only fluid I was losing was at night in the padding I wore. I’d wake up and change the 7 pads (large incontinence pads) because they were soaked. But on Monday, I gushed fluid into the sink, from the holes in this wound. This was new. When I would bend down to pick something up, I’d hear gurgling sounds. This was wild.
Homecare came on Monday morning, it was my usual Christine homecare nurse and she was floored by what this thing was doing. She had seen holes in people but never in a breast and never that deep. I joked with her that I was scared to drink water, that maybe the hole was so deep, anything I drank would come out of this hole (obviously that’s not possible) but I had to joke about it - it was crazy. I said to her that I had contemplated going to an emergency room and she looked me dead in the face and said, “I would you know”. I asked her what would they would do?, and she said a visit may fast track changes. I wasn’t sure I wanted to sit in an emergency room for nothing to happen. Dr. Lesniak knew what was going on. My GP knew what was going on. I don’t trust doctors but what was I supposed to do? I had to trust that they knew what they were doing. In hindsight, I realize most didn’t know what to do. There aren't many cases like mine. If my surgeon, who had been doing specialized breast surgery for well over 10+ years, had never seen someone like me (when he does 3-4 breast surgeries
on average EVERY week), how could they possibly know what was best? I knew in my heart, they were doing the best they could and I trusted Dr. Lesniak but there wasn't and isn't really a solid protocol on how to fix me. They run protocols based on what’s been studied. There are no studies for people like me. None. Once the nurse left, I decided I would call the Cross Cancer Institute and ask them about my Muga scan. I was concerned that laying there with this gusher of a hole in my breast would be problematic. Would I need to be totally naked or have to take the padding off? If so, I couldn’t do it. Most breast cancer patients have very intact breasts. Mine was falling apart literally. The gal I spoke with said she would talk to the people doing the scan to confirm, she agreed this was a unique situation but maybe we just reschedule my appointment for when I was coming to see the Oncologist in a week and a bit instead. I agreed I’d prefer that, maybe within the next week my wound would stop producing fluid and it would dry up or something and not be so gross. I had no idea what to expect. I also didn’t want to do this Muga scan and knew I wouldn’t be doing chemo with a hole in my body. So there wasn’t a rush.
I then called Chelsea and told her I had rescheduled the Muga scan and asked if I could come in earlier the next day to see Dr. Lesniak. She inquired why and I told her. Then I sent
her updated photos. I told her that my homecare nurse had suggested I maybe present to the emergency room. I was scheduled for an in-person appointment with Dr. Lesniak on Wednesday August 27(the next day) so he could physically see me. We hadn’t met since my first meeting with him, so I was told to pop in and in between patients they would squeeze me in so they could get eyes on me. The nurse had said, if not for that appointment, she would have told me to go to emergency that day. Chelsea mentioned that Dr. Lesniak was on call that week in emergency, he does breast related scheduled surgeries on Tuesdays and Thursdays and general surgery on call and other days. I honestly don't know when this man sleeps. I half joked if I should go on a night he’s there and see what happens. She saw the pics and said she would text them to him. Maybe he could get me in for emergency surgery while he was on call that week - this was something they NEVER do and she didn’t know what he would say but it was getting out of control and something had to change fast. She told me he was in surgery but would text him the photos so when he checked his phone out of surgery he’d see them right away. She would call me back as soon as she heard back. Maybe 90 minutes later my phone rings. It’s Chelsea and she tells me they’re scheduling me for emergency surgery on Friday August 29. Dr. Lesniak got the pictures, had
talked to the Oncologist and she said I couldn’t wait, surgery had to happen that weekend. It’s a complicated process getting me in and scheduling an “emergency bed” days in advance. Also unique because emergency mastectomies are not a thing. The hospital knew I was coming, I was scheduled early Friday morning for an injection that would turn my lymph nodes blue pre surgery and I would have a bed immediately after but likely that wouldn’t be confirmed till late Thursday night at best. Once I got the injection I would need to wait for an OR to open up. Any emergency surgeries that come into emergency would trump me, I would go once all scheduled and emergency surgeries are completed. No clue what time that would be, hopefully it would be that afternoon but it was possible that if anything crazy came in, I would need to stay overnight and it would happen on Saturday. It was the long weekend and Dr. Lesniak was on call all weekend. Surgery was happening, we just didn’t know when.
After that, everything was cancelled. My consultation with the Oncologist scheduled for September 2 was turfed with no new appointment scheduled, we would revisit this post surgery. My muga scan was cancelled indefinitely. My CT scan was rebooked. I asked that the CT scan be done post surgery a few weeks out - I wanted a fresh scan that didn’t show the crazy breast issues. That was rescheduled for September 19. My in-person drop in with Dr. Lesniak the next day was cancelled. He would see me on Friday at the hospital. So the 2nd time I ever saw my surgeon was in the OR just before he was about to remove my rogue breast, my life literally in his hands. I wasn’t his biggest fan at that point but everything in me knew I could trust him and I’d be okay. I hung up with Chelsea, took a deep breath and called my mom and dad and then my sister. Everything happened so fast it felt surreal. I needed to know that my dogs would be okay. I knew Lisa could and would help me with them and without saying it exactly like this, I made sure that should anything happen to me in surgery she would take care of them forever. Nothing about surgery scared me, nothing, except not coming home for Opie and Mocha. That thought destroyed me. It still does. It was the single hardest part of surgery for me. It was wild, I could talk about surgery and as soon as anyone mentioned “who's watching the dogs?” I would sob. It still is the only part of my journey that can make me full blown cry. I was terrified to leave them. Of course I was worried about leaving my family and friends too but something about the dogs just did and still gets under my skin. There is risk with any surgery and if my time was then, I had to be prepared for it, what choice did I really have? It wasn’t an option I wanted to entertain at all but I also know I’m not in charge.
Then I called my manager at work. The team I work with has been amazing and they knew something could change on a moment's notice. Immediately the forms needed for me to take a 3 week illness leave were put into the system and as of Friday August 29th I’d be off for 3 weeks. By supper time on Tuesday night, everything was finalized and all I did was sit on my couch and try to breathe. Surreal. I had begged for this to happen for months. It was finally happening. I had two days to wrap up work and it was go-time.
On Wednesday and Thursday, my homecare nurse came to help me keep everything clean and packed up. She took one last picture for me on Thursday - they were so happy I was finally getting surgery. Friday August 29th I reported to the Misericordia hospital at 8:00am for my lymph node injection. They would locally freeze a small spot above my nipple and inject a blue dye. This would flood my lymph nodes and make them colourful so Dr. Lesniak could see them in surgery and remove any that looked questionable. My lymph node biopsy was clear but there were some on my ultrasound that concerned them, this blue dye was going to help him find them. Once that was done I made my way up to my room. On the way, we passed Dr. Lesniak coming into the hospital. If not for my massive boob, he may not have recognized me. That was around 9:00am - I didn't go to surgery until 4:30pm.
At 4:00pm after a fun text exchange with Theresa about a country song that should be created about my long wait for surgery, we joked that maybe the “my milkshake brings all the boys to the yard” song was more appropriate and I joked that “my surgery brings Dr. Lesniak to the OR” would be the new lyrics. Less than 2 minutes after that, the nurses came in and said “it’s go time, we’re taking you down to the OR”. BIG DEEP BREATH. Here we go.
At no point that day was I nervous, not even in the OR. I expected I might be but I wasn’t. I was wildly calm and just ready to be done with this chaos. The anesthesiologist came to see me and gave me a “nausea” pill to help me post surgery. We joked about how weird his job was, like who was the first person to try going under? Why would anyone volunteer for that? He said he read some crazy books when he was in med school about a doctor who intentionally gave himself an ulcer just so he could have it operated on. These doctors are a different kind of human haha. He promised he would look after me while I was under and said Dr. Lesniak would be by to see me shortly.
I quietly sat in this spot in the hallway a few minutes, just thinking about how I got there, how much I had changed already health wise (I was down well over 30lbs at that point), my dogs, my family, and I prayed. I prayed that Dr. Lesniak would be guided to fix me up with the best possible outcome. I prayed his hands would be blessed and I would come out of this stronger. And then he came to see me. We then took off all my gauze padding and he sat on a stool and explained the surgery to me. A few things could happen. I might end up on a wound vac. I asked what that was. He told me it was a medical vacuum that would hold my skin together if he didn’t have enough to close me up. I would then be scheduled for an additional surgery in a week where he would need to do a back flap and close me up with my back skin. That seemed like a nightmare and I jokingly but very seriously said “let’s not do that okay?” He said he would do everything he could but it was a possibility. I apologized for being a bit of a pain in the ass. He looked at me and said “this needed to happen and it is, we’ll get this done” - at least that’s how I remember it. It was a moment of calm I needed and any reservations I had just left. He had my full trust, he had to, there was no other option. I asked how long the surgery was going to be. He didn’t know. It would depend on what happens as they get going. He really wasn't sure what we were dealing with or how bad under it all it was. We talked about my lymph nodes. I really didn’t want him to take any - the one biopsy was clear. He agreed but said that there are some pretty inflamed looking ones. He made me a deal, if they just looked swollen, he would leave them. If they looked at all gnarly, they were coming out, a second surgery do remove lymph nodes would be a nightmare - I agreed. I didn’t want any potential “cancer” issues left in me if at all possible - I told him to do what he needed to obviously. He finished drawing lines on me with a Sharpie, the cuts he would make and I re-signed my consent forms. Once that was done, I was on my way into the OR. As I was wheeled in, the OR looked nothing like they do on TV. They are bright!! Someone put a binder/corset on the bed I was going to lay on and I joked they splurged to get me a Victorian corset - how nice! A few laughed. I shuffled over to the surgical table and Dr. Lesniak says to me “we do a bit of a roll call”. I just laid there. Then he said “state your name and why you’re here”. OH me? I need to? Haha oops. So I confirmed my name, and that I was there for an emergency radical right breast mastectomy, a possible lymph node dissection and a cyst removal and debridement. Once that was done, the anesthesiologist came up to me and said he was putting the oxygen mask on me to help me breathe. I smiled, I knew it wasn’t to help me breathe but was gas to knock me out. A few deep breaths and I heard him say they were going to release my IV and I would feel a sharp pain, within 20 seconds I would be out. I felt the sharpness of the IV meds and in less than 15 seconds I was out.
When I woke up, a nurse with a pixie / super short hair cut was calling my name. She felt like she was right above my face, it was almost funny. She said I needed to wake up. I told her I was. She said I had to open my eyes. I told her I couldn’t. She kept coaxing me and I finally came to, I asked for my socks to be taken off. I was HOT, I kept complaining I was hot. I don't know if they removed my socks then or in my room but I was a mess coming out of surgery. I was thirsty and I was hot. I remember looking at the monitor above me and it was late. There was a window in front of me I thought and it was dark out. I asked how long I had been in surgery and I was told over 5.5 hours. This shocked me and them. I asked her if I was on a wound vac, she said no, the surgery was complicated and I lost a lot of blood but he stitched me up good, no further surgeries. THANK GOD! It was almost over. I begged for ice. I kept complaining I was hot. I heard them say I wasn’t running a fever and that I shouldn’t be hot. I heard them say I had lost a lot of blood and maybe that’s why I was hot. They got me ice and it was heavenly! I just wasn't allowed to choke - ha! And then before I knew it, an orderly was asked to come get me and return me to my room. They asked the orderly to “run” with me so I could get a breeze and cool down. And she did run…so much that I told her she needed to slow down because I was getting dizzy watching the ceiling going so fast haha. It was well after 10pm when I got to my room (I don't remember at all when I got back - might have been closer to 11). I remember seeing the lady I would share the room with, our eyes locked as I was coming in. My mom and sister were there and I just went on and on about how hot I was. I HATE being hot and I’m hot all the time so this was annoying. They shuffled me into my bed and immediately I complained that I couldn’t breathe. I felt like I couldn’t get any air and was a bit panicked. You’re in and out of consciousness at this point, confused, hot and I didn’t know why I couldn’t breathe. The nurse confirmed my oxygen levels were 100%, I was breathing just fine. I told them I wasn’t. I asked for oxygen and they agreed to give it to me but kept saying I didn’t need it. Then someone came in the room in this chaos and said “Michelle, in surgery, Dr. Lesniak had to remove your pectoral muscle, it feels like you can’t breathe because you are missing a major muscle, but your oxygen is just fine, you are okay”. Well, that was a surprise. We never did talk about the muscle coming out - this surgery WAS complicated.
My sister and my mom stayed for a little bit once they got me settled, I couldn’t cool down so Lisa wiped my face and neck with a cold cloth and I was sucking on ice like it was gold. I went through 15 cups of ice that night. I wasn’t allowed to drink anything major so I would let the ice melt and drink a few sips of cold water. My throat was so sore from being intubated and I was wired. My legs had these pads on that kept squeezing and contracting to help prevent blood clots post surgery.
Every hour the nurse would come in to check on me and take my vitals. I was awake every time - she kept telling me to sleep. That was impossible. I ended up being in the hospital for 4.5 days and I saw every hour on the clock the entire time.
On Saturday post surgery the surgical team came to see me before Dr. Lesniak did his rounds. They explained my surgery was very complicated and touch and go. They shared I lost a litre of blood and they had managed to stabilize me enough that they didn’t need to do a blood transfusion but it came close. I would be on a saline drip all day to see if that helped get my hemoglobin back up. This just made me pee non stop. They also told me I had my entire pectoral muscle removed in addition to the breast and 18 lymph nodes. By Sunday morning they took me off the saline and my constant IV. I would continue to get IV antibiotics every 6 hours I was in the hospital and another 10 days of antibiotics once I went home. My blood levels fluctuated all weekend, Monday morning my hemoglobin dropped to critical levels and that afternoon I got two bags of blood via IV. The entire time I was in hospital I felt amazing. I never did take any pain meds (except the last night I took a Gravol and Dilaudid (morphine) just so I could sleep. But I felt amazing, I was up and walking, eating like normal and I was able to lift my arm pretty high considering I couldn’t lift it at all after my first aspiration, post surgery it wasn’t an issue. My incision was small-ish (smaller than I expected) and super clean. I made it, I would still have drains for a couple of weeks but they were temporary and the insane cyst was gone. Forever. Thank God and Thank Dr. Lesniak, he went from being a Dr. I wasn’t sure I liked to being my personal hero. I was discharged on Tuesday September 2nd and before going home, I stopped at Frankies for some post surgery support. Now, I could heal, breathe and move forward. The worst was over.
And for now, I'll end this chapter here. I’ll do a part two sharing my experience post op and my experience in hospital and what it’s been like since. And what happened when I met with the Oncologist. And what I plan to do going forward. This ended up being a mini novel and I appreciate everyone who took/takes the time to read this. I know it’s deeply personal and not many would share with this much detail, but I am doing it because if there is ever anyone in my position, maybe they’ll find their way to my blog and find some nuggets that will help them on their journey. Maybe someone will read this and ask more questions when they see their doctors or push harder on the medical system to advocate for themselves. And I’m doing it because I’m a story teller and this story needed to be told. For those who supported me, visited, checked in and brought me amazing healing tools, I will forever be grateful for you all. This hasn’t been fun, but I’ve reconnected with friends I haven’t seen in decades, I have a new perspective on life and my health (mental and physical) has been the strongest I think ever in my adult life. As of today, I'm almost 55lbs down in my weight. My A1C is better than normal, my energy is through the roof. I'm apparently a bit of an anomaly - but I'm just beyond grateful and blessed to be alive to tell this story. Sometimes some of life's most brutal experiences—the ones that knock you flat and leave you gasping—are also the ones that forge the strongest, wisest versions of ourselves and for that I will forever be grateful for this experience. Thank you so much for reading. I hope you'll check out my next couple of posts. They won't be marathons. I promise.
Hi Michelle,
I'm so amazed at your story. I'm wondering if you can share more about why they removed your pectoralis muscle and how your doing post operation. I'm Praying for you!! Can we talk on the phone??
Michelle, I had no idea you were sick again - if I would have, I definitely would have been praying for you. I will start now for your complete healing! This witness is absolutely amazing, you have been through such a HUGE crucible. I praise God that you shared this very personal account of your experience. I have a friend who has experienced some similar things (she has mets breast cancer) and a hubby who had necrotizing pancreatitis a little over a year ago and almost died (20% necrosis - if it had gone to 50% he would have gone septic and his organs would have shut down). He spent 28 days in the hospital. Many people were praying …
Omg! I just read this and it is wild! And girl, are you strong!!! I wish i had at least .01 of the strength and courage you have. Thanks for sharing your story. I would love to read more about the natural stuff you were taking and how it helped. Sending love from Texas!
Appreciate you taking the time to write this.
I read the whole thing and I am amazed by your strength and perspective. You were a great advocate and followed your intuition.