I Want My Pink Money Back!
Tuesday, August 2nd, 2016
When diagnosed with breast cancer, I figured the bazillion pink dollars me and my friends had raised over the years would provide me with easy access to clear treatment options and emotional support. Boy was I wrong.
First thing I discovered is that once your doctor shares news of your fate (over my cell phone during a high school meet–thoughtful, right?), it can take weeks and weeks to see a doctor or meet with some form of a consoling medical professional.
After several phone calls to an oncologist I’d heard was good, I was told that I was putting “the horse before the cart.” I needed to have surgery first and then speak to them. But didn’t I need genetic tests and an MRI? What options were out there? I’d seen the long lasting side effects from radiation, heard stories about missed tumors, and knew of the many debilitating side effects from “hormone therapy,” which is now pretty much standard of care for most breast cancer survivors with hormone sensitive tumors like me.
It was going to take several weeks to meet a surgeon. After much complaining I was granted a phone call with my surgeon’s nurse practitioner. She informed me that I could wait many weeks or months because my tumor was small. She described my breast mass as a “poopy tumor,” that would just need “a little radiation and lumpectomy, and then I could get on with my life.”
It appears that women’s breast cancer options are one size fits all. No one seemed interested in my immune function, mental-emotional state, past illnesses, genetics, or the fact that my aunt died from her “poopy” tumor. Despite several requests to meet with a caring, informed professional to help me deal and plan, I was never offered an appointment.
We women walk miles and miles, buy pink T shirts, totes, and kitchen appliances, raising a staggering $6 billion annually to improve the treatment of breast cancer. The pink money we raised seems to have bought us McMedicine standards of care that rob women of individualized care and few good options.
We deserve more. Way more. Within days of diagnosis all women should be offered emotional support and enpowered with information, if they want it. We are not all the same. We should not have the same treatments. Decisions are not all about mortality indices and cost efficacy. The medical world is changing at breakneck speed and there are many new things to consider.
With my my many weeks to wait, I dug for answers and wow am I glad I did. Had I followed the “standard of care” offered to me, (lumpectomy, radiation, and hormone therapy), I would have missed a second cancer, not been able to reconstruct my breasts at the time of surgery, exposed my organs and immune system to harmful radiation, and worst of all, I would have been placed on a 10 year medical regimen that could adversely affect my longevity, quality of life, relationships, and sense of well being.
I figured out what was best for me and my cancer. I researched radiation options, like proton and intra-operative, IOR. I understood there are dozens of important genetic markers beyond BRCA, and a world of immuno-therapies, such as dendritic vaccine which I did in Mexico with excellent results.
The billions of pink dollars we raise should be looking at more innovative ways to detect and treat breast cancer. I do not believe that the current standard of care, hormone suppressing therapy is right for all women. I’m fairly certain that we can be using lower doses of these drugs that would be better tolerated. Research exists showing cannabis inhibits breast cancer cells, while supporting bone growth and treating insomnia, without getting a high feeling. This could be the perfect adjuvant for the millions of women not tolerating hormone suppressing therapy. If we raise $350,000 I could run a double blind control study for breast cancer survivors right now in Israel using Cannabidiol. Dendritic vaccine is important and the future, and is available now in Mexico. Lets offer some trials for women opting to pretreat before surgery.
That surgical nurse was wrong. My “poopy tumor” was a big deal. If I had followed my her advice I would not be getting on with my life happily as I now am.
I hope this will be a wake up call to not throw our money into pink research that is poorly regulated, not well accounted for, and the funds that survive the greed largely fund chemotherapy trials. Lets take our pink money back and develop better options for women. Its our problem.
Check out http://thinkbeforeyoupink.org/resources/before-you-buy/