I was diagnosed with MMMT (also known as GYN Carcinosarcoma or GCS) in April 2015. I have been on this journey for 20 months and I have learned so much. Not only about MMMT but how this diagnosis changes everything. I want to share the big Ah-ha’s!
This is a full-time job!
I knew nothing about this rotten cancer when I first heard the news. Like everyone else, I went to the internet and read everything I could find and understand. I thought I would be dead in 6 months. Pretty grim. I pulled myself together and decided that this is a problem to be solved. A BIG Problem, but none the less, I was determined to find a solution. I went to the major cancer centers, spoke with experts in MMMT (there are not many), and spoke with women who were dealing with the beast. I explored some alternative therapies. I started a website to share this information and found a research team to find a cure. This is all I do.
You will have to sacrifice.
MMMT is not the same as ovarian or uterine cancer. It is treated like ovarian cancer or uterine cancer because of the lack of knowledge and experience with this beast. Find a treatment team who have significant experience with MMMT. You may have to travel. It will cost you money. Be prepared to make sacrifices. The alternative is devastating. Give yourself a fighting chance.
The cure does not lie in traditional chemotherapy/surgery/radiation. There has been no change in the survival rate for this cancer in over 40 years. While some women may benefit from the traditional model, the 5-year survival rate is pretty low and does not seem to be budging in the right direction.
Your immune system is your best defense.
This is where the cures will be found. In the mean time, boost your immune system in every possible way. Exercise and push yourself. Eat foods that will promote health and stop inflammation. There are many many resources available to help you make good choices. Websites are abound with information. If you have never eaten a vegetable, this is the time to start. It’s not that hard to give up cheese especially considering the alternatives.
This is ALL about you!
Be Joyful. Do things that make you happy. We don’t have to fix the world now. We need to take the time to fix ourselves. Allow others in and accept help. By allowing others in, you are giving back.
Share your stories.
The GCS community needs to hear from you. We need to know what is working for women and we need to share our experiences – both good and bad. Share your story.
Support MMMT Research.
This is where the cures will be found. As far as I can find, the only GYN Carcinosarcoma Research (MMMT) is being done at Mass General Cancer Center. If you are aware of any other GCS research, please share this information. We have to support the research and make the researchers accountable for our support. We need to push them to find innovative and effective treatments for us.