Randi Kreiss

Becoming the expert in your own disease

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It’s the job nobody wants, but when you get a diagnosis of breast cancer, the job is yours. You must become the world’s expert in your own disease.
Ten years ago, I discovered a small lump in my breast. As I wrote then, “You are driving down a road, all is well, the future looks untroubled and then suddenly the wheels fall off the car, your hair catches fire and you head over a cliff.” In retrospect, that seems a bit melodramatic, but it was how I felt.
In a quick and disorienting process, I got the bad news, I had biopsies, a lumpectomy, radiation, and treatment for five years with an aromatase inhibitor, an estrogen inhibiting drug. You take a pill every day, and it suppresses the estrogen in your body when estrogen has been found to be the factor in your cancer.
Every one of these steps, even 10 years ago, required personal decisions.
One doctor asked if I wanted a mastectomy or a lumpectomy. Did I want six-week radiation, three-week radiation or one-week radiation with a radioactive implant? Should I stay on the aromatase inhibitor for the basic five years or continue treatment? The second-most destabilizing and stressful part of having breast cancer — the first being fear of death — was feeling unprepared to make these choices.

I can tell you what got me through. I found excellent doctors. I brought my husband or another “good listener” to every appointment. I read everything I could (except personal blogs) about the choices, and I accepted the help of a few friends who had had breast cancer and could guide me. At one point I remember sitting with a friend as I was deciding between lumpectomy or mastectomy and asking her to just think through all the pros and cons of each.
There are women who cannot undertake research and decision-making. I understand. The best path, then, is to ask someone to be your proxy in researching the options, find experienced doctors and go with the best advice. Let trusted family or friends help you make the choices of treatment, when there are choices.
For me, the job of learning about the disease and my options, while anxiety-producing, also conferred some sense of control. Websites like www.breastcancer.org, www.mskcc.org, the Breast Cancer Research Foundation and Susan B. Komen offer updated, detailed information on every aspect of breast cancer.
My job isn’t over. Now, 10 years after my diagnosis, many of the protocols have changed. New drugs have come on the market. Chemotherapy is used more judiciously.
Genomic testing helps inform who will benefit from chemotherapy and who will not. This testing becomes more sophisticated every year, and has saved thousands and thousands of women from the rigors and side effects of chemotherapy.
Drugs are now available to treat previously untreatable cancers, and new therapies and medications can extend the lives of women with metastatic breast cancer. The gold standard for my type of cancer used to be five years on the aromatase inhibitor; now some studies indicate that extended treatment is beneficial for some women. You must keep asking questions.
The use of MRIs in addition to mammography for follow-up testing is encouraged by some doctors and discouraged by others who say there are too many false positives that lead to too many unnecessary biopsies. These are hard choices to make when even doctors sometimes disagree.
All that any one woman can do is become educated, find doctors who specialize in the disease, make the best decisions you can in the moment, and know that the chances are better today than ever before that you will recover and live a full life. Part of the job is to know or discover any family history, insist on genomic testing if the findings may inform your treatment path and find a friend who can be your guide.
Decisions must be made in the beginning and then again as you age, because the body of research increases, protocols change, and you may decide to take advantage of something new that will improve chances of good health going forward.
As we mark Breast Cancer Awareness month, I am encouraged by the access patients have to new regimens. Please, be sure you understand all the options as you move through treatment and recovery.
The job never ends.

Copyright 2021 Randi Kreiss. Randi can be reached at randik3@aol.com.

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