A Pre-Geriatric Saga, Pt. 6: Focused BC Conquerors

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During November, I had the opportunity to attend a focus group for women that overcame breast cancer. It was held at Gilda’s Club Chicago by a doctor from George Washington University in D.C. The word ‘survivor,’ as I just discovered on a great blog linked below, is not appropriate for us because it assumes we are still downtrodden, rather than victorious. So, it’s hereby banned!

While taking radiation treatments this summer, I met a wide variety of patients with all types of cancer. But the ladies in attendance for the focus group went way beyond the norm, when it came to their stories of survival under the most adverse circumstances. Diagnosis time ranged from 5 months [myself] to 28 years, and ages from 20s to 70s. All races, affiliations and otherwise, the women told their stories with conviction and determination.

The horror stories of how they were treated when the diagnosis came was amazing. You would think that those close to you [or related to you] come to your aid when you’re told you have breast cancer. Don’t believe it for a minute. One was evicted by her girlfriend, causing homelessness; two of them had husbands leave, told they ‘couldn’t handle it.’ Others were ostracized by their families in various ways.

On the other hand, some of the ladies were pampered beyond their wildest expectations by their loved ones. A lady whose mother and sister were nurses had many insights on what to ask the doctors, on post-treatment issues, and where to find the information necessary to move forward. Another older lady was so dignified, a doctor wouldn’t dare not to answer her questions directly, as she made her experiences known.

In fact, everyone present was definitely pro-active when it came to treatment. One of the younger ladies had problems with her doctor answering her questions ambiguously, and making light of her concerns. She got more advice in 10 minutes than she’ll probably receive in a lifetime! They were indignant for her, and told her exactly how to correct the situation in her favor and for her peace of mind. Nothing is worse, we concluded, than not knowing. Not knowing what comes next, not knowing if we’ll have recurrences, not knowing if we have to go through treatment again, not knowing where to find post-treatment info.

The purpose of this focus group, according to the doctor from GWU [who was wonderful], is to aggregate comments from cancer centers across the country and create a repository of guidelines. These in turn will be used to hold the cancer centers accountable for their treatment of patients. In other words, she asked us what we want. We definitely told her! Those answers, along with those from other focus session locations, will become the standard against which the cancer centers are held. Good idea.

This was an enlightening experience, and I must thank God again that my version of BC was so mild compared to what it could have been. Even now, I am making sure that my time is spent as constructively as possible. Even me, who loves a good fight, has to point that fight towards something higher. Stay tuned; many of those questions on where to find post-treatment information will be answered on a sister website that’s currently under construction. The completion will be announced here.

Have a blessed Christmas and New Year; 2014 is bringing clarity and action for all of us.