E-Patients, Cancer, and the Power of Positive Thinking

By Nancy B. Finn

There are currently more than 2.9 million breast cancer survivors in the United States. This includes women still being treated and those who have completed treatment. I am one of those survivors after two rounds with cancer, one in each breast, unrelated to one another.

When I was first diagnosed, I went through the usual shock and disbelief that this could not be happening to me. My parents had both died of heart disease at an old age, and I had always assumed that I would follow that route. At the advice of my gynecologist, (during the era when doctors thought that hormone replacement would help ward off cancer and cardiac issues), I was on hormone replacement for five years. Did this contribute to my cancer? We will never know, and it does not matter.

Cancer is a common problem; particularly for people over the age of 40.When it happens to you it is frightening. You can become depressed, angry, and sad. However, if you remain positive, approach your diagnosis with a fighting attitude, and find a team of physicians that you have confidence in, you will be so much better off. Since I am an empowered, engaged, educated patient, I diligently schedule all my medical appointments; work with my team of physicians and follow with what we agree on; research my health issues; make sure that I have all my screenings on time, (including mammograms); do self exams; visit my gynecologist annually; keep up with the latest medical advancements in breast cancer and with other conditions I am dealing with. Fortunately, both of my cancers were detected very early via mammogram and ultrasound at the Massachusetts General Hospital Avon Foundation Comprehensive Breast Evaluation Center, where I am convinced that the latest in digital mammography equipment and the excellent diagnosticians made a difference.

No matter where you are treated for cancer or who your physician is, there are many choices that you must make. During my first bout with cancer, my team explained the differences between lumpectomy, mastectomy and partial mastectomy. My surgeon recommended the least invasive lumpectomy for my Stage 1 DCIS. After much research and discussions with other cancer patients, I followed her excellent advice.

Since my cancer, was detected early, (Stage 1), and was estrogen positive, I was one of the lucky ones who did not need chemotherapy.
However, there were other vital decisions to make including:

1. Whether to have radiation and what duration? Radiation can be 6.5 weeks 4 weeks (the current standard protocol); or condensed into one week. One week is more experimental but clearly easier on your schedule. My doctors recommended the 6.5 weeks for me both times because of other medical issues I am dealing with. So that is what I did.

2. Whether to have hormone therapy using an aromatase inhibitor or tamoxifen to prevent a recurrence of cancer? After my first cancer I tried the aromatase inhibitors which gave me bad side effects. With the second incidence of cancer, the doctors advised taking tamoxifen. This required some soul-searching as tamoxifen also has some nasty and dangerous side effects. I talked with several of my doctors, many friends who had used this drug and other cancer patients on the web before deciding that this was worth a try.

By approaching cancer with a positive attitude and making sure that I was a well informed patient who was suitably engaged, I make better decisions about these choices. Meanwhile I have committed to taking good care of myself, including:

A. I will get my mammogram when advised to do so, and on time. No postponements or procrastinations. If I am called back for a second exam I will go quickly, with a positive attitude and address the outcome with fortitude.
B. I will see my gynecologist on a recommended schedule and in between those visits I will diligently do breast self-examination to be sure I am monitoring the situation appropriately.

There are web sites where you can get excellent instruction on how to do a breast self exam. They include:
http://www.breastcancer.org/symptoms/testing/types/self_exam/
http://www.nationalbreastcancer.org/about-breast-cancer/breast-self-exam.aspx

3. If I am in doubt about what my doctors are telling me I will get a second opinion. The best way to find information on doctors is from other professionals. There are also web sites where you can find extensive information and ratings on doctors and hospitals…

Among the questions you want to address are:
How often do they do this type of surgery?
What is their quality and safety record?

Best web sites to find information on physicians and hospitals are:
http://doctor.webmd.com/physician_finder/results.aspx?
http://www.healthgrades.com/

Breast cancer is the second leading cause of cancer death in women, exceeded only by lung cancer. According to the American Cancer Society, the chance that breast cancer will be responsible for a woman’s death is about 1 in 36 (about 3%). The good news is that death rates from breast cancer have been declining since about 1990, as a result of earlier detection through screening, increased awareness, and improved treatment. There is promise that this will continue as patients become more empowered and educated and pay attention to their screening dates and their body signals. I am doing all of that and more. I hope that this will lead to many healthy years ahead for me. We never know, but the one thing we learn is to live each day with a positive outlook and plan good things for the days ahead.

Nancy B. Finn is a health care journalist and thought leader on the impact of digital communication on organizational behavior in healthcare and patient care. She is the author of e-Patients Live Longer, the Complete Guide to Managing Health Care Using Technology, published by iUniverse, and targeted at a consumer audience, and Digital Communication in Medical Practice published by Springer, and targeted at a physician audience, and a patient, like the rest of us.

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