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Breast CancerChemotherapySide-Effects Management

The Aftershocks Kept Coming: What to Expect After Cancer Treatment

Breast cancer survivor Lisa D’Ottavio describes the side effects of treatment that she experienced, from chemo hair loss, neuropathy, and lymphedema, to radiation effects and more.
December 2017 Vol 3 No 6
Lisa A. D'Ottavio
Patient Advocate
Biddeford, ME
Breast cancer survivor

Hearing the words “you have breast cancer” was a shock. But once I got over the initial shock, I had a plan. That plan consisted of “do whatever you need to do to survive.” Of course, that is much easier said than done, and just when I thought I could handle the blow, the aftershocks kept coming.

Chemo Hair Loss

In about the fourth week of chemotherapy, on the exact day the oncologist predicted, I lost my hair. Knowing that I was going to lose my hair was very stressful for me. I tried to gain control over what was happening to me by getting it cut short about a month before I started chemo, but I didn’t go to my hairdresser. Instead, I went to the mall to be anonymous.

I was watching my long blond strands slide to the floor and was heartbroken. I was scared, and felt so vain for even caring about this insignificant inconvenience, but I knew for sure that I didn’t want to watch it come out in clumps in the shower.

So just before my hair was totally gone, my friend came to my house and buzzed the rest of it off. My head felt alien to my body, and because I had already started treatment at that point, the rest of the hair on my head actually hurt. I had avoided some of the shock, but none of the sadness that comes with this kind of baldness.

Neuropathy

As the weeks of chemotherapy continued, I noticed periodic numbness in the tips of my fingers and most of my toes. I learned what neuropathy was, and I was experiencing it full on. Today, 11 years later, I still experience numbness. I’ve come to live with it—the first of many long-lasting aftereffects of cancer.

For HER2-positive breast cancer, I had to take a drug that suppressed my production of estrogen that was the culprit of my cancer. This forced me into early menopause, at age 42. This, along with a potent cocktail of the chemo drugs Adriamycin and Cytoxan, was administered through a port over my left breast for 11 weeks. I was supposed to get 12 weeks of treatment, but the neuropathy bothered me so much that my oncologist said I could forego the last week—lucky me!

I was dealing with this while still recovering from the mastectomy (removal of 1 breast) and tram flap reconstruction operations weeks earlier. I was grateful that I did not experience any nausea during the treatment, although that was probably thanks to the drug I was taking to prevent it.

Radiation Effects

Alas, once I started radiation, my arm started to feel heavy. I had to hold it in one position for about 30 minutes, every single weekday, for 5 and a half weeks. I started radiation about 2 months after I finished the chemotherapy.

During one of my early visits to the radiologist, I got my first “tattoos.” They consisted of 4 small black dots surrounding my “new” right breast, which had been formed from the tummy fat and abdomen muscle removed during the tram flap surgery. I thought, “damn, at least they could have been cool tats!” They were needed so that the doses of radiation from the machine would hit the same exact spots every time I received radiation therapy.

The radiation itself was painless, but after the first few weeks, I noticed that the skin around my new breast and underarm was getting tighter and was becoming very dry. I just kept pushing through, because I thought I was entering the last phase of my therapy. What I didn’t realize was that the aftereffects of cancer would last throughout the rest of my life.

One of the “best” parts of my treatment was when my friends would just show up at the house and say, “Get in. I’m driving you today.” I had fabulous conversations with my favorite people, and would temporarily forget why we were in the car, and where we were going.

Lymphedema

I also had to deal with slight lymphedema in my right arm. Before I started chemo, I had a biopsy performed on my sentinel node, which is located under the armpit. It was more painful than anything I had ever experienced. With that biopsy, the doctor confirmed that the cancer was spreading, and during the mastectomy operation, they also removed 16 lymph nodes; of these, 6 were positive (they had cancer cells). This is the reason I had to go through chemo and radiation—the cancer was starting to spread quickly.

The only remedy for lymphedema is exercise and physical therapy. The insanity of it is that you can actually get full-blown lymphedema any time throughout your life. I can no longer ever have a needle injected into my right arm or have blood pressure taken on that arm. I have to be extremely careful not to bang into things, or cut anywhere on the right arm or fingers, because this could trigger full-blown lymphedema.

The problem with physical therapy for lymphedema is 2-fold: first, it is expensive to have physical therapy, and only certain therapists are trained to administer the specific therapy for lymphedema. The second problem is that it is painful to continually break the scar tissue and open lymph nodes to help fluids move better throughout the body. I believe that surgeons are able today to remove the lymph nodes without cutting through the underarm muscle, which is a vast improvement from a decade ago.

Damage to My Thyroid

Another side effect of the radiation I didn’t expect and only realized much later was the damage to my thyroid. My neck should have been covered with a lead “blanket,” but it wasn’t. I couldn’t figure out why I couldn’t lose weight once the therapy was over. The thyroid controls the metabolism enzymes that allow us to lose or gain weight.

I remember going to my primary care physician, and the nurse asking me if I’d had a physical exam. My reply was, “Nope. I’ve been a little busy with other things.” Apparently, all it took was a simple blood test to determine that my thyroid was underactive, and so began my lifelong “Synthroid (levothyroxine sodium) habit”—just another side effect of cancer treatment that I was not expecting.

Ready for the Next Adventure

There are so many things that I can complain about on a daily basis, but I choose not to. Every day when I look in the mirror I am reminded of what I went through and how ugly the scars are, but also how I survived.

I made it through a terrible diagnosis, and I’m proud to say that I live my life to the best of my ability, most days anyway. I still have my “why me” days, days when I’m sad about it all, but mostly I concentrate on the love and faith that got me through it. I am beyond grateful for every single person who helped me. Sometimes it takes a life-altering event to make you realize that life is still so good. More than a decade later, I think I’ve proved to myself that I’m strong—and that keeps me going, ready for the next adventure.

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Last modified: April 5, 2018

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