Shortly after I was diagnosed with breast cancer the first time, a woman named Genae Girard, had written a book called Off The Rack. The book was successful. She started a FB page called Off The Rack. The beginning comments were about her book, and things other women shared in common with some of the things she had written. Some began sharing their differences in experience too. It wasn't long, and things took off.
Women began sharing their experiences, both similar, and different. Many of the women had never really been told the stage of their cancer, or the type. Others knew that information, and posted. Those that didn't know, were encouraged by others on the page, to find out. The support, and encouragement was phenomenal.
It took off like crazy. Women began asking more questions. "How do I deal with this, and that"? "I'm experiencing this, is it normal". The page kept growing, and growing, taking on a life of it's own. The encouragement, and support grew too. When it reached a certain size, Genae began contacting, and interviewing some of the top breast cancer specialists in the country. Everything from researchers, to surgeons, to oncologists. Medications were discussed. All the drug trials were posted. That's something at the time, that could be difficult to get information on. Some things worked better on certain types of breast cancer, while others worked better on other types. Side effects were discussed. What was normal, and what was not. How women were coping with the various side effects. The page grew. Tons of information came pouring in from huge numbers of women that either had breast cancer, or were survivors. Did you know that a vast majority of people that get chemo for breast cancer, get toenail fungus shortly after completing chemo? Many of them get it for the first time in their lives. Like I said, all sorts of information emerged.
Eventually men began joining in. Some of them joined in due to wanting more insight, more information, or reassurances regarding their mothers, wives or daughters. Other men joined in due to having breast cancer themselves. Yes, men get breast cancer.
The information did not go to waste. Two big things that came out of it: 1. One of the big pharma companies was pushing to pass laws that breast cancer material, became their exclusive property.
https://www.nytimes.com/2009/05/13/health/13patent.html She informed those on her page about what was going on. She fought it, and 100,000 strong, we fought with her. We won. 2. The fashion industry needed to update their clothing lines. Tens of thousands of women couldn't find swimwear to accommodate their needs. Abercrombie Fitch was the first consulted, and a year later they had a good selection of swimsuits with pockets pockets for prosthetic inserts, and higher necklines to hide surgical scars. It was such a success, the following year they expanded their line. It was so lucrative, others began noticing. American Eagle Outfitters, started a line. In time, some of these branched off into their own lines, eventually branching off into their own labels. The need for better after surgery wear, and prosthetics, were addressed. A LOT of things improved.
Awhile after Genae died, they shut down her FB page. There has never been another like it since, and that's a shame.
The point of all this is to say, maybe someone motivated, should start a page, or thread to help encourage, empower, inform, and allow women to be heard regarding their medical issues. It could turn out to be a very worthwhile project.