Michelle’s story is a powerful reminder of the challenges faced by people diagnosed with Inflammatory Breast Cancer. Michelle knew something was wrong with her body, but like so many IBC patients, she faced dismissal and delay, leaving her fighting not only her illness but also a system that wasn’t ready to listen.
“In July of 2022 I very responsibly had what was my second mammogram. I was 44 years old and was on my way overseas to see family for the first time since before the pandemic. I thought, get it out of the way, one less thing to do.
I didn’t get the results until I got back a month later and all was well. That is probably why I thought, can’t possibly be anything bad in December when I felt a weird hard ridge in my right breast. If I heard one more time about how I was perimenopausal! Even as a 20-plus-year registered nurse, I discounted what I felt as it was nothing like the lumps they tell you to watch for, and I talked myself into believing it was hormonal and my perimenopausal body messing with me. I had just started a new job; it was insanely busy and Christmas. So, when in January I realized that my period had come and gone, and the ridge of hard tissue remained I started to get nervous. Then within a week, I could feel a defined mass and my nipple had inverted. I called my GP in a panic for an appointment and told myself, stop worrying, it’s probably nothing.
My GP looked and said “well, it’s concerning” and said he would refer me to a breast clinic for a mammogram and ultrasound. He also said, if you haven’t heard from them or me within a week, call me. A week went by and nothing, so I called. His MOA told me he hadn’t sent in the referral but it was on his desk. I called again, it was still there. Twice a week I called begging for the referral to be done. It took 3 weeks before it was sent.
I went to the clinic a week later for my scans and I remember the tech asking “why did you wait so long; you have swelling already” as she pointed out the marking left on my breast by my bra. Again, I dismissed this as nothing. After all, I have really large breasts and marks on them from bras wasn’t that unusual. I was called within a day or two of my scans to be told I needed to come in for a biopsy. The soonest appointment wasn’t for three weeks. I pleaded for anything sooner. The best they could offer me was to put me on a cancellation list. Up until this point, I had told nobody what was going on. I didn’t want people in my business. I work in healthcare so had gone to a breast clinic in a different health authority with the hopes that I could go in, get this thing looked at, find out it was nothing and carry on with life with nobody the wiser. I regret that choice to this day.
A week later I started having burning pain in my breast that radiated down my arm and side. It was excruciating and I couldn’t sleep without ice packs on my breast. I was seeing swelling that I could no longer dismiss and everything in my body was telling me that something was terribly, terribly wrong. I couldn’t stop doom scrolling on my phone. I had somehow discovered the symptoms of IBC and had started obsessively looking to see if things were red, if I had peau d’orange, if the lump was bigger.
At this point, I thought if I didn’t tell someone I was going to implode. So I called one of my oldest friends. She answered the phone, and I burst into tears to the point I couldn’t talk. It probably took me five or ten minutes of trying to get out what was happening. It was awful, and it was a relief to say it out loud. “I think I have breast cancer, and I think it’s bad”. She immediately gave me the words I needed, “I am here, tell me everything, let’s figure this out” To be fair she probably said many other things, but I couldn’t tell you what they were. I was catastrophizing and started talking about how I didn’t want to die in Canada. I wanted to die at home if I was dying.
All sorts of things just came rushing out. The exhaustion and the pain had at this point turned me into someone I really didn’t recognize, and certainly didn’t want to be. Hormones undoubtedly played a part. She firmly told me I needed to call the clinic and ask for an earlier appointment which I did, and was denied. In retrospect, I would have asked to talk to the on-call radiologist rather than the clerk answering the phone. But you are never thinking clearly in these moments. Then she dropped a truth bomb I didn’t want to hear. “You need to tell someone there what is going on”. All well and good to call her with whatever I needed, but she was halfway across the world. I needed to have someone close by that I could lean on. So, I determined to tell two women who are both amazing friends and colleagues. I had no idea how to pull this off but went to a spot with one for lunch and blurted out “I think I have breast cancer!”.
It made for an interesting meal. Then later managed to get a quiet moment with the other and said much the same, at which point an IT guy immediately walked into the office and started fixing a printer. Seriously, timing is everything. I received nothing but love and support from both and one insisted she would come to hold my hand during the biopsy in a few days.
At the biopsy, I raised with the radiologist that I was worried about IBC and had been having symptoms change rapidly. She asked how long I had waited for the biopsy. Her response to 3 weeks was “I am so sorry, we have failed you”. She put a rush on the samples and in a couple of days I got a call asking me to come in for results.
Unfortunately, I had to go alone as it was work hours, but I planned to have my friends on speaker for the appointment. The doctor came in, I asked him to wait a second as I called them. He said I didn’t need that and started talking over me. “Ok so it’s positive for a carcinoma, you can see here that it says it’s over 5cm, so it has been there a while, all you need to know is all the appointments you need are already being made” I honestly didn’t know what to say. Which for me is rare, just ask anyone who knows me. He told me to get on the exam table for a quick clinical assessment of my breasts. I did ask at this point if the results showed that it was IBC. He looked confused and honestly annoyed. I relayed again about the swelling. His response was “of course you have swelling, you had a biopsy”. He didn’t listen to me at all that the swelling and burning I was having preceded the biopsy. A nurse took my hand after and said, “don’t worry, we are going to take care of you”. I walked out to my car, shut the door and cried harder than I can remember doing in years.
Then I had to call the friends at work sitting in a closet wondering why they weren’t on speakerphone and when was this appointment happening. I drove back to work, got marched to tell other people and then sat in a corner cubicle and sort of worked, mostly cried but didn’t want to go home alone. The surgeon the next week was the first one to finally listen to me. When I asked again about IBC she paused. She had already examined me and hadn’t seen what I was seeing. But she asked me to say it again. Then she looked closer. Yes, there was subtle discolouration, yes, subtle, but the peau d’orange was there when you brushed the skin, and yes, the lymph node I could feel in my armpit that she hadn’t was there when I directed her to it.
She swung into action and did a punch biopsy away from the tumour and near my nipple. If this was positive, then yes, she would have to call it IBC. She also said she had seen people with IBC do well. I didn’t hear that bit, which is why you take someone with you to these things. My friend reminded me of it later as all I could think of was the terrible stats I read online. It wasn’t long till the call came to confirm it was IBC.
Things became a whirlwind of action. Scans, appointments, oncologist, PORT insertion, echocardiogram. I was confirmed as stage 3C HR negative, HER2 positive IBC. I told my friends and family overseas. Then I decided to dye my hair cartoon red, because why not? If it was going to all fall out might as well have some fun.
Starting chemo was joyous. Sounds crazy, but it was a step towards doing something, a step towards beating this insidious thing growing in my body. The day after chemo my breast flared bright pink. I took it as a sign that the drugs were attacking the right thing. By day three after, I wasn’t so much joyous as unable to get off the sofa. The messages from my health professional friends checking in constantly on day three should have been a giveaway that things were about to get spicy.
I went through 8 rounds of chemo. After round 3 I landed in the hospital for a week with febrile neutropenia and a kidney injury from the antibiotics and dehydration. It’s uncomfortable being looked after by people you know so well. It’s also the best thing in the world. I was released and 2 days later went for round 4 of chemo and landed in the emergency department again with anaemia so bad I could barely stand up. Rounds 4-8 came and went. So did visitors from around the globe keeping me company. Deliveries of groceries and home-cooked meals and unbelievable generosity from coworkers and friends. Because of this, I was able to access additional drug therapy that wasn’t covered by my cancer agency but was recommended by my oncologist.
The surgery went like clockwork, one month almost to the day after my last chemo cycle. By this time my skin intermittently looked pink and the dimpling kind of came and went. Sometimes it looked completely normal. The tumour seemed to have dissolved to nothing and I couldn’t feel it at all. I had a modified radical mastectomy, and 16 axillary lymph nodes removed.
I figured out that the release of information office will print off your results if they are in the system. I have never been good at waiting. So, the next week, I walked in and walked out with the best news ever. Pathological Complete Response!! No cancer was detected in any of the nodes or any of the tissue. More than I could have dreamed of.
All I needed now was to get through radiation and hopefully put this behind me. This is the one part of my story that I am still coming to terms with. I was meant to start radiation a month after surgery. I had a phone appointment with the radiation oncologist that I assumed was going to be about general info, here’s what will happen etc. The department had been calling for 2 months checking when my surgery was happening, including the day after surgery to make sure it had gone ahead. He told me that my planning CT was booked for 6 weeks. Not 6 weeks after surgery, 6 weeks from the phone call. This meant I wouldn’t be starting radiation for about 11 weeks after surgery. I questioned him and he joked “well at least your CT is booked”. I was less than amused.
My oncologist looked uncomfortable when I told him but tried to play it down as likely within the window of acceptable practice with their research and guidelines, but not his area. The radiation department had been in the news for massive staffing issues resulting in delays. Nobody advocated for me.
When my date got closer, I still hadn’t heard anything, so I called to be told we don’t call until a couple of days before with times, and you have been bumped. I lost the plot. No way was I going to get delayed further. I started making phone calls, sending emails, talked to the director of the department. The radiation oncologist called and agreed “Oh yes, you did have aggressive disease. Will see what can be done.” My original date stuck, and my radiation began. I asked repeatedly about the dosing and about getting a boost. I was told, “Well, I talked to some colleagues, and we don’t usually.” I was given 40 fractions over 15 sessions, not clustered or consecutive as they should have been, as now it was Christmas, and they don’t work on the holidays. If only I had known what the guidelines for radiation were elsewhere, maybe it would have been different.
Since then, I have spent time recovering and trying to put my life back together. It takes so much longer than you think it will. The fatigue, the brain fog, the aches and pains and joys of chemo-induced menopause. I decided to put my energy into advocacy and the hope that other people have knowledge that I didn’t. My oncologist has given me a 10% recurrence risk over ten years. Those odds are wildly different than anything I ever thought possible. I am hopeful, but like all survivors, I still deal with the nagging fear in the back of my head that each new ache is the cancer coming back, that each twinge is something nefarious. In time, I hope this gets easier. I have challenges ahead. Lymphedema, reconstruction, going back to work. All of these I accept gladly as lesser evils than the alternative I thought I would be facing.
When I was at my worst, in hospital in the middle of chemo, my friend, and at the time my doctor (strange times indeed) came into my room to tell me some less than stellar news. I didn’t take it very well. He said he had been talking to his wife about me and saying how I am one of the toughest people he knows. He was struggling to see me be anything but tough. His wife had reminded him that I had every reason and right not to be that resilient person he was used to. He then gave me a huge hug. I remember this moment from time to time because it’s important to be tough, fight the good fight, and keep moving forward. But, it’s also ok to sometimes be a messy puddle that needs propping up by the people we love and rely on. I am learning to be gentle with myself and keep living with hope for better times ahead.”
As a registered nurse living in British Columbia, Michelle is a fierce advocate for IBC awareness. Serving on an advisory committee with the IBC Network Foundation Canada, she’s been instrumental in advancing critical projects, helping to bridge the gaps in education, awareness, and support for those facing IBC.
Michelle’s journey highlights an all-too-common reality for IBC patients who often have to push to get the right tests and be heard in our medical system. With IBC, every second counts. It’s always advanced by the time it’s diagnosed, and the urgency to catch and treat it can’t be understated. Michelle’s resilience through her fight is both inspiring and heartbreaking—she shouldn’t have had to fight this hard to be taken seriously.
We are so grateful to Michelle for sharing her story. Her journey brings strength to our community and awareness to a disease that too often goes unnoticed. Michelle, thank you for everything you do to advocate for IBC awareness—we’re wishing you continued strength and health!