Tuesday, October 29, 2013

Limitations of Breast Cancer Awareness and Support

In my blog, I've been raising awareness about the limitations of typical breast cancer awareness campaigns. Most don't share information about the risks of breast cancer treatment and present life as "normal" and free of suffering. I am pleased and honoured to share with you a guest post by breast cancer survivor Alli Flowers about her personal experience with these terrible effects, her frustration with the lack of awareness and support for post-treatment effects, and the overwhelming pink. She also shares with us some of the science behind these problems and their prevalence among patients. Thank you, Alli! Check her out at http://justanothergeeksite.com.

Beyond Cancer
by Alli Flowers

A year ago I couldn’t stand the sight of a pink ribbon. They’re everywhere throughout October. Why is it that breast cancer gets an entire month, when other diseases get a day at most? A month of pink ribbons serves only as a depressing reminder to someone battling cancer that she is fighting every day for her life. It is depressing enough having cancer and undergoing treatment. We know people want to help, but October is so…in your face. Meanwhile, patients fighting other kinds of cancer are largely ignored, which must be equally dismal.

Everyone has heard the horror stories about what it’s like to undergo chemotherapy: the nausea, exhaustion, hair loss, and change in taste buds. Many have heard a few things about radiation, although not to the same extent. Surgery is surgery, and most people naively assume that women will get reconstruction when they have a mastectomy…but this is not an option if radiation is to follow a semi-successful treatment of chemo and mastectomy.

The question is, how many people know what happens to cancer survivors post-treatment? Do they simply skip away happily the day of their last treatment? More importantly, do the oncologists, surgeons, and radiation oncologists treating these people prepare them for life after treatment?

The answer is no. The truth is, some of the side effects of chemo alone are more debilitating than the chemo itself. According to cancer.gov, an estimated 30-40% of patients who undergo chemotherapy are affected by chemical induced neuropathy. You may have seen the commercials on television for Lyrica to treat diabetic nerve pain. What they’re describing is neuropathy. It can cause extreme pain in the hands and feet, leave you unable to properly balance, and in extreme cases unable to do simple things like pull up a zipper or drive a car. Chemo induced neuropathy can last a few weeks, a few months, or forever. Modern pharmacology offers some relief for some patients, but no cure. Men and women who were perfectly healthy prior to cancer are left crippled.

Alli Flowers undergoing compression treatment for lymphedema
Even with the emphasis placed on breast cancer in October, most people are blissfully unaware of lymphedema. Lymphedema can occur to anybody who has had a cancer affecting the lymph nodes. According to cancer.gov:

Lymphedema can occur after any cancer or its treatment that affects lymph node drainage. It has been reported to occur within days and up to 30 years after treatment for breast cancer. Eighty percent of patients experience onset within 3 years of surgery; the remainder develop edema at a rate of 1% per year. Upper-extremity lymphedema most often occurs after breast cancer; lower-extremity lymphedema most often occurs with uterine cancer, prostate cancer, lymphoma, or melanoma. A large population-based study supports the evidence that lower-limb lymphedema is experienced by a significant proportion of women after treatment for gynecological cancer, with the highest prevalence (36%) among vulvar cancer survivors and the lowest prevalence (5%) among ovarian cancer survivors.”

When I expressed concern to my surgeon about pain in my arm following a double mastectomy and radiation, he said it was nothing. I later asked my oncologist if he would refer me to PT/OT, which he was glad to do. I am now of the opinion that all cancer surgery patients be referred to PT/OT as soon as possible. When I saw my therapist for the first time, my right bicep was more than two inches larger than the left, and I was presenting textbook axillary web syndrome. At this point I was happy I had so much meat on my bones so that I didn’t have to see as well as feel the pain all the time. If you’re interested in what this looks like, there are some wonderfully disturbing photos at Step Up Speak Out. It feels as bad as it looks.

Therapy can help a great deal, but there has not been enough research into lymphedema for any permanent solution or relief.

By all means, wear a pink ribbon to show your support. But don’t limit yourself to pink. Every cancer has a ribbon. Every cause now has a ribbon. There are so many that diseases and causes are now sharing colors. Don’t overdo October. If you know someone battling cancer, help them understand that they may have further skirmishes to come. And if you know someone who has undergone treatment, try to understand that the war may be won, but the fight continues.

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