Advocating for cancer research

Congratulations on this .... and thank you for taking the time out of your life to advocate.

Cindy, have you checked out FoundationsforWomensCancer.org? Also, if you are on Twitter, look into @GYNCSM which is a community of gynecological cancer patients and advocates. They also have a website at gyncsm.blogspot.com.

Because the type of uterine cancer I was diagnosed with is considered rare (MMMT), I contribute to Rare Disease Advocates at rareadvocates.org and the National Organization for Rare Disorders at rarediseases.org/for-patient-organizations/ways-partner/advocacy.

Hope this information helps and thank you for your efforts to advocate for cancer research!

Hi Cindy, I am sorry to say that there doesn't seem to be much going on in the way of advocating for more research for uterine cancer. I asked my oncologist if he was pushing or could push for for more clinical trials for advanced endometrial cancer (he's the head of gynecological oncology at a big cancer center), and he said he was trying. So I guess one of my tips would be that whatever stage we may be at,  all of us should all talk to our doctors about what they are doing to foster more research in this area. And we should keep on asking.

I also had an idea of emailing researchers in the field directly and thank them for their work, and ask them to keep going with their research. I actually was in contact with a reseacher at Stanford and I think I gave him a boost. That probably would not be a practical strategy in the grander scheme.

But you're right about the problem. 

 Sadly, although it is the 4th most common women's cancer, and it kills 10,170 women year, uterine cancer is somewhat of an untrendy cancer. That is why you see the giant disparity between advocacy in breast cancer circles and uterine cancer circles. Uterine cancer death rates actually increased 1.9% per year between 2007 and 2011, but it's not like there has been a national outcry about it, or even notice. The National Cancer Institute has allocated only $54 million in grants to uterine cancer for 2016 and 2017, while breast cancer, the most high profile cancer, is allocated $699 million a year.  Women's cancers altogether kill about 30,000 women a year, while breast cancer kills about 50,000. But women's cancers are basically in the shadows.  Breast cancer has 51 grants for 2016 from the American Cancer Socity for a total of $20.4 million. Endometrial cancer has 11 grants, but the dollar figure is so low it's listed as "funding unknown".

I'm not at all interested in having uterine cancer turn into a saccharine commodity or a color. I'm interested, like you, in having more money designated for research for stage III and IV endometrial and other uterine cancer, especially new immunotherapy treatments that look promising. If you have a method of pushing for that, it would be super. Not sure who decides how much research $ goes to each kind of cancer. Thanks for bringing this up. I don't think the Foundation for Women's Cancer is exactly a high powered advocacy organization, but at this time it seems to be the only organization remotely doing this type of work. I found their website very unhelpful, confusing and not geared toward women in the midst of treatment and beyond.

At any rate, many of the women on this board are very private and very busy battling cancer at the moment and could use a political advocate, even if they are not in the position to assist. So anything that can be done, I applaud. 

https://report.nih.gov/categorical_spending.aspx