In September 2016, nine months after my neurological condition was diagnosed, doctors biopsied a swollen axillary lymph node that they found with a PET/CT scan. It was a small procedure where the doctor used a core needle to remove some of the suspicious tissue under local anaesthetic. A day later, my mother told me that she’d been diagnosed with breast cancer. I don’t remember how long it took to get the results, but I remember the news being bittersweet. Because of my Paraneoplastic Syndrome, I was already resigned to the fact that cancer would probably show up eventually. In fact, the only successful neurological treatments I’d read about included treatment for cancer as well. In a way I was almost relieved.
My neurologist informed me of the cancer. His official report was in Dutch, but according to Google translate it read: “Conclusion: lymph node biopsy right armpit: localization large cell carcinoma. Based on the immunohistochemical profile and the localization, there is a preference for a primary localization in the breast (in this material poorly differentiated, ER and PR negative, Her2 positive). This concerns a number of scattered tumor cells in a lymph node, matching metastasis of a large cell carcinoma. Based on localization and immune profile, preference is given to a breast carcinoma as primary origin.” In plain English that meant metastasized cancer cells were found in my armpit, and even though the origin was never found, there was a strong chance that the primary tumor originated in my breast.
The treatment was based on a theoretical cTxN1 ER / PR neg / Her2Neu positive breast carcinoma. I was treated with four courses of Doxorubicin and Cyclophosphamide every three weeks, followed by four courses of Docetaxel, Trastuzumab and Pertuzumab every three weeks. The Trastuzumab continued for a year. The chemotherapy side effects were horrible. I was in hospital a few times with infection, I started menopause, and there were lots of other side effects. My chemotherapy doses were lowered three times to try to manage them all.
After chemotherapy I elected to have a double mastectomy, which is the surgical removal of both breasts. I opted for no reconstruction. After all the chemotherapy side effects I didn’t want to risk any complications or to need replacement surgeries for the implants in the future. Once I had recovered from the surgery, I had sixteen sessions of radiation to zap any leftover cancer cells. The radiation caused mild lymphedema and fibrosis. Lymphedema is a blockage that prevents drainage of lymphatic fluid and causes swelling.
Under different circumstances, mastectomy and radiation wouldn’t be offered to people with a low ‘grade’ of cancer. But because of my neurological symptoms, the doctors agreed that preventative treatment offered the best chances for avoiding any further neurological progression. Any further damage could leave me permanently bedbound. I didn’t want to take any chances.
For me, having a mastectomy wasn’t a difficult decision. Living with as much function as possible is more important than having breasts. The choice to live flat wasn’t that hard either, but I’m definitely more comfortable wearing ruffles or layers, so I understand feeling self-consciousness. I sometimes feel like I did in grade 6 when I shaved my legs for the first time, then had to stand in front of the class reciting the multiplication table. You’re hyper aware of feeling naked – like everyone is noticing your shaved, naked legs, or noticing your lack of breasts and new boyish form. I’ve gotten used to being flat, but it definitely took time to process the change and come to terms with the loss. I know a lot of people won’t understand my decision to have a mastectomy without reconstruction, but I’m at peace with it. And I understand that this route isn’t for everybody. Reconstruction or no reconstruction, it’s a difficult decision to make.