My ongoing battle with Stage IV Breast Cancer
By Marianna M
“But… I don’t have time for this'' was one of the thoughts running through my head during my first meeting with the breast cancer liaison at The Breast Center. As an avid runner, I had a marathon to run in a few months' time for which I was training; little did I know I’d instead spend that time in my own marathon, of sorts.
The first time I was diagnosed with breast cancer was at the age of 31, in 2011. I’ve had fibrocystic breasts since my late teens, “a cystic party in my breast” as I’d joke and had grown tired of the biannual ultrasound monitoring. But after noting a new, larger lump in my left breast at 10 o’clock (most notable cysts were in my right breast), and the firm, fixed nature, I couldn’t ignore it after a few months of new accompanying pain. I narrowly made my annual appointment with my primary care provider, who agreed I needed a mammogram.
With my first visit to the Breast Center 11 years ago, I remember being greeted warmly, given a warm robe, and ushered in for my mammogram. For anyone who has had one, they are quick and it was a blur, but the end result was needing a biopsy of the concerning mass in my left breast. A week later I was again at the Breast Center. Some things stand out in my memory: it was a Friday and I knew I’d have to wait over the weekend for the results. I also recall one of the technicians “tsking” me and shaking her head (as if I knew better) when she discovered I drank a cup of soy milk daily (presumably regarding the phytoestrogens). The biopsy was painful and quick, and the recovery was easy- little pain with prescribed management plan.
When I received the call of the positive diagnosis, I was in fact in the middle of taking a season final test for a graduate level class. Shockingly, I passed.
When first meeting with the cancer liaison at the Breast Center, I was told I’d require chemotherapy, possibly radiation and a lumpectomy or mastectomy, contingent on my future meetings with the general surgeon, the plastic surgeon, and the oncologist. o this day I appreciate that the surgeons were flexible in presenting me with options- it gave me a much-needed sense of control over the situation.
Ultimately, I elected for a double mastectomy with the hopes of never needing another mammogram, and eradicating risks for future breast cancer.
And was given the diagnosis of triple positive breast cancer (estrogen and progesterone positive, Her2 positive). My first meeting with the oncologist explored treatment plans - and the need for a PET scan for staging and meeting with a genetic counselor to determine inherited risks.
Reflecting on this time, the unknowns were some of the worst. Staging - what would my prognosis be? And if I was positive for BRCA 1 or 2, would I need to have my ovaries removed as well? I was fearful of what my identity as a woman would become, especially since I had yet to have children. At the time I did not feel any desire to freeze my eggs for hopes of a future family.
I recall I received the PET scan results while Christmas shopping- it was a lovely, snowy afternoon. Seeing the oncologist’s number, I held my breath and could feel my heart pounding as she spoke.
“There’s no evidence of metastases.”
I remember breathing again, feeling hope that I would only require surgical procedures for my breasts, not to remove my other reproductive organs. The genetic testing resulted negative for BRCA 1 and 2, confirming this. This lifted some of the fears I had been carrying. However, after discussing the treatment plan going forward: double mastectomy in January, a month of recovery followed by implantation of a port IV in my chest the first day of chemotherapy a month later, which would cause hair loss, compromise my immune system, and place me at risk for a host of other possible side effects. I do recall musing to a co-worker at the time that I was considering not going through with the chemotherapy, given what the experience would entail. Even now, 10 years on, I am grateful for this gentle and soft-spoken friend's strong response: she grabbed me by the shoulders and said sternly “you’re going to do this chemotherapy and the chance to survive this… I know someone who refused chemo and she passed away from cancer”. Wherever you are, S, thank you.
Reflecting, it was difficult to wrap my head around having a diagnosis like “CANCER” while feeling so strong and healthy. I kept wanting to look over my shoulder and double check that there wasn’t someone else this diagnosis was meant for.
The chemotherapy was Taxotere and Carboplatin every 3 weeks from February through mid - May, and Herceptin weekly for a whole year. Initially upon researching this treatment I was also horrified to read that Herceptin has a risk of heart failure and would require me to have routine echocardiograms to monitor for this side effect (luckily that hasn’t been a side effect I’ve yet experienced). Luckily for me a pharmacist acquaintance who was familiar with Herceptin reassured me that my risks for this were limited, which alleviated my fears.
I underwent the double mastectomy (removal of both breasts including my nipples) on January 9th, 2012- my mother’s birthday. She was not around to celebrate her birthday or be present for the surgery, which is a struggle for me to reflect on her reasons. The face- value ones she provided (she was too busy with a business-related commitment) are difficult for me to wrap my head around. While the surgery itself was uneventful, and reassuringly found limited axillary (arm-pit) node involvement (which they removed), giving me a diagnosis of Stage 2c.
Drains were placed in both cavities where my breasts had been, and unfilled expanders were now placed. The drain tubing was inserted about 6” under each armpit, held in place with one stitch, and tunneled around to end in each breast cavity near my sternum. I consider myself a plucky and resilient person, but I found the first dressing change of the mastectomy incisions incredibly emotionally and physically challenging. I had been well educated on the nature of each surgical incision, which would be from either side of my sternum, across the breast, to half-way under each armpit (with the removal of the nipple along each incision). It wasn’t terribly painful but removing the dressings and seeing the physical changes (I hesitate to call it a disfigurement) quickly overwhelmed me - I felt hot and lightheaded and had to sit down as my vision closed in; I became nauseated. A few moments of collecting myself and the first, and subsequent, wound care went well.
During these first weeks after the mastectomy, I was also anticipating the start of chemotherapy - the surgical wounds needed to heal before starting something that would suppress my immune system. I was advised to avoid any lifting or above- the- shoulders activities for 3 months. However, being a rock climber and somewhat pigheaded and optimistic, these recommendations were taken as loose guidelines. I went to the gym 3 weeks after the double mastectomy, limiting my climbs to anything that didn’t feel like it was “pulling”. Reflecting back I think it may have been a reckless decision, but at the time it sure did feel good.
I started chemotherapy in February of 2012 the same day I had the implanted port-a-cath placed. Less troubling than the other side effects but still an issue, especially with the recent loss of my breasts, was knowing the chemotherapy would cause my hair to fall out. After some research by myself and my husband at the time, we found a treatment not covered by insurance called “cold cap therapy”. This meant renting several custom gel caps (essentially several gel cold packs formed into a hat you secure with velcro) which you’d then freeze with dry ice in a large cooler to -50 Celcius, and cycle through a series of these each chemotherapy session and for several hours after. I wouldn’t do this again, for a handful of reasons. It was painfully, brutally cold and, as my oncologist said: “if you’re freezing your hair follicles that is a space for tumor cells to be protected”. It was also very expensive, about $2,000 from February through May. Though at the time I felt like the loss of my hair would’ve been just one too many losses.
Shortly after the start of chemotherapy I remember my last period I had for several months- it seemed as if my body was shedding the last leaves before a hard and early winter. Chemotherapy was unpleasant but manageable- my affinity for certain foods changed. I had daily minor nosebleeds for several months and enough immunosuppression for me to require the expensive Neupogen shots, which were incredibly effective but also resulted in noticeable bone pain and lymph node swelling.
Throughout all of this I also continued to run and climb with a supportive network of friends, which buoyed my spirits. Not all support was welcomed, however. I had one friend who knew I wasn’t going to lose my hair with the cold cap who elected to shave her head. Why, I’ll never know- maybe I misrepresented myself. It did make me angry when she met me at the climbing gym with a scarf and earrings over her bald head looking more like a cancer patient than I did. I also received plenty of well-intentioned advice along the lines of “you need to do X, or “you need to do Y”, which also made me angry. This was MY health, MY journey, an intensely personal process, and felt like I was being patronized by others who had no perspective on the matter beyond their opinions. I did appreciate support along the lines of “you are doing so well, keep it up”, or “I’m so proud/ impressed by how you’re handling this”.
I also had a close acquaintance who was a holistic healthcare provider volunteer to treat me. Also well- intentioned, I mostly recall her unspoken sense of disapproval for me complying with the chemotherapy regimen and not following her diet and supplement recommendations to the letter. Some of these, harmless as they were, caused minor and unwelcome side effects. I cannot think of aloe juice without feeling nauseated.
Along these lines, my oncologist also recommended I see a therapist to assist with my coping with the cancer diagnosis and treatment process. While the psychotherapist was wonderfully kind, my first session ended up being my last as I balked at her gentle insistence that I needed to “grieve” all that I had experienced. To me then, that felt like an unnecessary allocation of my energy. Later I’d come to appreciate just how much therapy has helped me.
Also, during 2012 I had my breast expanders (injectable sacs in each breast) gradually filled. This was meant to stretch my pectoral muscles so they’d accommodate the silicone implants that would be placed once chemo was completed. This was fortunately an easy and routine, painless procedure.
I finished the Taxotere/ Carboplatin regimen in mid- May of 2012 and was exuberant. I was so excited to have my life, my energy back. My spirits were immediately buoyed by this, and I spent the rest of the year continuing weekly Herceptin while I ran and climbed as I could. I ran (and completed) a different marathon that fall, and can recall sitting beyond the finish line crying at what the year-to- date had entailed. My now- ex- husband stood uncomfortably over me and helped me as I trudged to the car on sore legs.
The expanders were replaced with silicone implants just before Christmas of 2012, and about a month later in early 2013 the same fatherly plastic surgeon created new “nipples” with existing skin tissue in the area, tattooed to the appropriate color of the areola I lost.
Following completion of the weekly Herceptin for a year, I started Tamoxifen, an estrogen- blocking pill that I’d take daily for 5 years. Also fortunately for me, this had no side effects that I can recall. I consider myself incredibly fortunate to have gone through the 2012 treatment regimen relatively easily.
Emotionally, the cancer diagnosis in those first years seemed like a noble hurdle I’d overcome. I grew as a woman in my thirties and discovered my marriage to a well- intentioned but somewhat confused husband was not a good fit. We divorced in 2014. While traumatic, it was necessary.
After 5 years of Tamoxifen, I was given the “all clear” and had no further need for visits with my oncologist. As she seemed pleased to share with me, she’d be “in my rearview mirror”.
There were some bumps in the road. An 8-hour panic attack after hearing an acquaintance with the same breast cancer diagnosis had died. Heavy drinking while in a toxic relationship. But successes too.
Fast forward to May of 2019.
4 years into a job I loved. A stable relationship with the man of my dreams. Owning my own home. And, since January a smattering of issues, most of which lasted a few weeks. I began getting my period frequently and irregularly, sometimes twice a month. I began suffering from terrible heartburn that wasn’t alleviated with a multitude of treatments. I developed what looked to be the beginning of a small hernia. I had significant low back pain for a few weeks, then hip pain for a few weeks, both of which I attributed to my inconsistent running schedule. Perhaps the “red flag” for me was when I suddenly had severe right chest pain, worse with breathing, laughing, and laying on my right side. Hugs hurt. I also realized around that time that I had lost significant muscle mass- which might have been, again, from not exercising as much. Still, something just felt… off.
To simultaneously address the chest pain and make a long- overdue follow up appointment to monitor my silicone implants, I scheduled to have an MRI of my chest (which I should have done TWO YEARS prior).
I knew, when I received the call from the same fatherly plastic surgeon there was a problem. He apologized and somewhat sadly reported he was unused to informing people of results such as mine: while the silicone implants were intact and otherwise unremarkable, the imaging had revealed multiple lesions in my liver, lung lesions, lymph node lesions, and a pathologic rib fracture that was now healing. The overall implications were clear: metastatic cancer.
Devastated, I immediately called my boyfriend who was visiting family in California, who knew immediately with my crying the results were dire. Within hours he was on a plane home, and my best friends were by my side, ensuring I wasn’t alone for a moment. While they couldn’t fix my health, they sorted out my home and helped me feel safe, supported, and loved. And my friends- the family I chose- picked me up in every way possible. And, while awaiting a new appointment with the same caring oncologist, my wonderful boss and coworkers gave me all the time from work I needed to sort things out.
Another PET scan revealed extensive metastases: many, many liver lesions, bone metastasis to my lower spine, right hip and pelvis, the healing right rib, lung lesions, lymph node lesions. The day I had the PET scan I vomited in my purse on the way home from the anxiety and ended up throwing a rather nice handbag away. But thankfully, I had not thrown away my hopes or resolve. Soon after, a liver biopsy (obtained from the cancerous mass that was, apparently, NOT a hernia), confirmed it was metastatic breast cancer, her2 positive, that had mutated to estrogen and progesterone negative status.
A good family friend connected me with the head of oncology at the local university. And my friends insisted on consulting Mayo Clinic, which felt like a grand old hotel with courteous staff every step of the way. The bottom line, however, was strong advice to continue to seek care through the same oncologist, who was offering a clinical trial in addition to first line chemotherapy: Herceptin, Perjeta, Taxol, and the trial immunotherapy.
This time, I elected to lose my hair. I cut it incrementally, and while the prospect was initially devastating, I quickly warmed to the idea after choking on several hairs accidentally cooked into my morning scrambled eggs. The hair had to go. Cutting it shorter than I’ve ever done before, I was happy with the new edgy look. And, as the chemo sessions progressed, so did the hair loss. I cut it shorter, shorter until I could buzz it. And every step of the way I found love and support, not only in those I held dearest, but in passing encounters with women at work, who would comment on how lovely they thought I looked with a shaved head.
The outpouring of this love and support clarified the conundrum of it all: love uplifts while simultaneously bringing you to your knees. Even with the petty every day struggles that life presents, I am in awe of the graciousness, kindness, and love shown to me.
In this time, I felt strong enough to explore alternative modalities in addition to routine treatment alongside my then- boyfriend. We’ve read countless studies to support these novel approaches: So many supplements. A lot of diet changes. No more alcohol. Alternative vitamin infusions. Off- label use of prescription medications. More exercise. More therapy. Lots and lots of therapy, which I am also grateful for every single day. Reading books on how to better care for myself, from the inside out.
And still, chemo continued. Luckily, all metastases, with the exception of the liver lesions, disappeared. Some months into the trial, findings concluded it was ineffective in treating “my” cancer, and so it was stopped. After 10 months the Taxol was discontinued. We carried on with the Herceptin and Perjeta with hopes that it’d keep further cancer growth at bay. However, a routine follow-up scan in December of 2021 revealed new growth of the liver lesions- the cancer had become resistant to the chemo. When pressed to answer questions of time, the oncologist reluctantly answered, “I can’t promise more than 5 years”. Once again, devastation. But we had more options for treatment.
I started Enhertu in December 2021. We adjusted diet and some supplements and off- label medication use. Somewhere around February 2022 I was surprised to realize the hernia- appearing tumor mass had all but disappeared. Knowing I had a PET scan in March, we cautiously dared to hold out hope. Strangely, the results were so vague that even after asking a few physician friends to interpret the results, and a radiologist acquaintance to review the data, it was unclear. Truth be told, the results looked SO promising none of us could believe it. I, in fact, did not believe until shown the visualization of the PET scan the actual results: COMPLETE response to treatment. No evidence of disease anywhere. Or, in the words of my oncologist, “Hallelujah!”.
Reading up on the Enhertu treatment, I’ve since learned of a roughly 4% likelihood of complete response. How much of this I can attribute to the alternative modalities I’ve explored I cannot say for sure. And so, my rule of thumb is that I shall continue that which doesn’t make me so miserable that I can’t enjoy my daily life. I’ve been fortunate to be able to cut back on the frequency of the chemotherapy from every 3 weeks to every 4 weeks.
And while I know stage 4 breast cancer is a terminal diagnosis, I hope for new developments and new treatments to become available before I need them. Kick the can, as they say.
In this time, I’ve often wracked my brain, wondering what choices I’ve made, what I’ve exposed myself to that could have contributed to this cancer diagnosis. Numerous possibilities. And what of the emotional trauma, that which I couldn’t avoid as a child, to those I stepped into on my own as an adult? Who can say.
While my world has gotten smaller - I don’t maintain unhealthy relationships- my understanding of the love I have and share has grown immeasurably. I’m still incredulous at the realization that I married the man of my dreams this past May 2022, and that our home where we married wasn’t large enough to accommodate the friends and family who have taught me what true love is. If love could affect outcomes, I’d live forever.
Learn More About Breast Cancer
We sincerely thank Marianna for sharing her very personal story with us and all of our readers. If you’d like to learn more about breast cancer and risk factors you can start to learn more by reading our article, “Am I at Risk for Breast Cancer?”.
As always, your doctor is your best resource. When in doubt schedule an appointment to discuss any concerns or questions you may have.