Reflections on Fifteen Years Beyond Breast Cancer
By Adie Mackenzie
A Journey That Began in October
Every year during Breast Cancer Awareness Month, I am reminded that on October 13th 2010, I had my final chemotherapy infusion in an attempt to fight triple negative breast cancer (TNBC). The success of the intervention is obvious in the fact that I am here to write about it, and to reflect on the goodness of living long beyond the statistics that led me to expect.
Breast Cancer is not one disease; each manifestation is as nuanced as the patient dealing with it. In my case, the type, TNBC, not estrogen nor progesterone nor HER2 positive, is an aggressive form. I did not test positive for either of the BRCA or any of the other associated genetic mutations, despite my sister’s early diagnosis of ovarian cancer and our paternal grandmother having suffered and died of both breast and ovarian in the late 1950s. But my family’s combined experiences made me eligible for extensive testing and for regular breast MRIs, as it was very difficult to image my dense and large breasts with mammography. After several years of every mammogram indicating areas of concern leading to painful biopsies with negative results, my doctor ordered the MRIs. 3 years of these led to nothing, and then it led to the discovery of a small but mighty tumor in my left breast near the chest wall. Suddenly, life became very different for me.
From Caregiver to Patient
This happened shortly after I had started working as a newly-graduated Physical Therapist Assistant at Vanderbilt University Medical Center in Nashville, TN. I was employed in a clinic treating patients with chronic pain and chronic illness, and we had an active cancer rehab program. I was working with all kinds of cancer patients every day. I was in my prime. I did not anticipate joining that group of patients, especially in my first year of this new phase of my life. Because I did not want my patients to see a therapist who appeared to need the care that they were receiving, I got a wig and lots of make-up. It was a point of pride to be able to prevent my own health status from being part of the conversation as I cared for others.
I became a massage therapist in my early 20s, when a number of my mother’s friends who became my clients were diagnosed, and the treatment that they underwent was intense, even brutal. In those days, radical mastectomy was still a surgical option of choice in many cases, leaving women weak and intensely scarred. Often, severe fascial restrictions limited their activities. They were also nearly certain to experience secondary lymphedema. And those who underwent lumpectomy and radiation were tattooed with life-long marks rather than the current tapes used to preserve the location markers for the radiologists. These women were given higher radiation doses and larger areas of treatment. Several told me later that they were sorry they did not simply have mastectomy at the time as the residual breast was disfigured and often prone to lymphedema in that sensitive area. But mastectomy, as I stated earlier, was a more consequential surgical choice than it is now. These patients had few good options. And some, 50 years later, are thankfully still here to complain about it!
Treatment and Tenacity
The book “Radical” by Kate Pickert (Little, Brown, Spark 2019) bravely goes into intimate detail on the author’s own experience with the disease and offers an extensive history of breast cancer and it’s treatment. Another wonderful book, “The Emperor of all Maladies” by Siddhartha Mukherjee (Scribner, 2010) was issued during my treatment and given to me by a friend. I couldn’t read it then, but later was able to enjoy the audiobook, which also gives a great deal of information on the history of cancer and it’s treatment. The book went on to win a Pulitzer prize and to be made into a movie. It’s worth a read, listen &/or watch.
My own treatment was of course not fun and frankly, I was hesitant to undergo it at all until I looked at the statistics that were relevant to my particulars. Those numbers indicated that I was unlikely to live another 10 years unless I underwent the harsh intervention of AC-T: Adriamycin (doxorubicin), Cytoxan (cyclophosphamide) and Taxol (paclitaxel). The treatment went on over 6 months during which I lost every hair on my body along with my appetite and the ability to smell and taste the foods I loved. I also developed peripheral neuropathy – pain and tingling in my hands and feet. My balance was impacted, and I fell several times. I had surgery as well, lots of surgeries, but I did not have radiation. Again, that decision was based on the statistics particular to me. I’d started my cancer fight with lumpectomy expecting a small and brief radiation treatment known as MammoSite, but it turned out my tumor was more advanced and aggressive than it looked on MRI. The cancer was in a few of my lymph nodes. Chemo was now the only option to have any likelihood of survival beyond 5 years. And statistically, following chemo, in my case either radiation or mastectomy had similar long-term benefits. I chose surgery alone for several reasons that I won’t get into now. Once again, I must have made a decent decision as I am still here to discuss it.
Although medications to mitigate the side effects were helpful, and despite that my own treatment had less of an impact on my daily life than what I had observed with women a generation ahead of me, it was a grueling time. The crushing fatigue I experienced along with the aforementioned side effects, all of which had an impact on my ability to perform my job offering manual therapies to other patients, made continuing to work through the treatment very hard. But I had the personal commitment and desire to do my job in order to both maintain my health insurance coverage and my dignity. I cried, and I struggled, and with family, colleague and friend support, I got through it.
Lymphedema and Last Effects
LLymphedema is a common secondary condition to Breast Cancer treatment. And in fact, Breast Cancer Related Lymphedema (BCRL) is the most common presentation of lymphedema diagnosis in developed countries.1,2 Between the surgery to remove lymph nodes for staging and testing, the scarring of radiation or the internal damage to delicate vessels caused by some chemotherapies, there are multiple risk factors for the lifelong swelling concerns that can follow. I have been extremely fortunate to experience very little swelling, and some surgical revisions to my scars have helped mitigate my lymphedema further. I have the training to understand all of my risks and I self-manage well utilizing compression and manual therapy. Not all women are so lucky. And sometimes this is a rude surprise later in life if the medical team does not provide adequate education and surveillance before, during and after cancer treatment.
Life After Cancer
Today, I live with the after-effects. I have my hair back, curlier than ever, which I wear long and uncolored. My appetite has returned, thankfully, along with the ability to enjoy my favorite foods, so important here in my new home of New Orleans! I’ve learned to deal with the odd, exaggerated pins-and-needles pain and sensitivity to temperature in my feet and hands. I have a diagnosis of osteoporosis, surprising for a person as active as I am, noted shortly after I completed treatment and again, I blame this on the chemo. Still, I say daily that “I’m glad to be here to complain about it!”
Over the 15 years that have followed, medicine has sped forward. Today, many patients can be tested to see if chemotherapy will benefit them. This can help determine the proper medicinal cocktail to give them optimal results without damaging uninvolved tissues unnecessarily. There are cooling caps that can be worn to prevent hair loss. Future treatments may be delivered in an mRNA-type injection that will lead to more targeted therapies and even less secondary long-term impact by this protection of fast-growing cells that are important for immune and other bodily functions. I hope the brilliant scientists who work on such things will not be impeded in their studies; I know that the advances that were available to me in 2010 are responsible for high-quality of life that I enjoy, despite the damages I have to manage, and it can be even better for the patients of the future.
A Month of Gratitude
So, as we honor and acknowledge Breast Cancer Awareness Month, I want to thank everyone who has ever marched for funding, or has sent well-wishes to a friend undergoing treatment. I share the sadness with those who mourn the ones we’ve lost. I am here, but so many friends and beloved family members with Breast Cancer have left the planet since the day that I was diagnosed. Let’s all celebrate each day of health and happiness we are given.
If I can offer any support to anyone out there who reads this blog, please reach out. There is much sweetness to enjoy while we are here, and it is all the sweeter when we share it.
- Sleigh BC, Manna B. Lymphedema. [Updated 2023 Apr 19]. In: StatPearls [Internet]. Treasure Island (FL): StatPearls Publishing; 2025 Jan
- Mahon SM, Carr E. Lymphedema: Common Side Effect. Clin J Oncol Nurs. 2021;25(6):29. doi:10.1188/21.CJON.S2.29
