Treatment is Highly Variable
I have had the opportunity to speak with many women with GYN Carcinosarcoma including ovarian carcinosarcoma, uterine carcinosarcom and even one women with carcinosarcoma of the fallopian tube. One of the things I have learned is that there is a wide variation in how we are treated, as well as a broad variation in how we respond to treatment. For example, I started on carboplatin and taxol. That regimen did not work for me, but did work for other women, at least for awhile. Ifosfamide, and later cyclophosphamide, has been successful in stopping my cancer for the past year, but has not achieved any remission. At this point, my cancer and I are co-existing.
I spoke with a woman who was diagnosed in 2012 with stage 3C uterine carcinosarcoma. This woman went through extensive debulking surgery followed by 6 cycles of Paclitaxel and Carboplatin, and has been NED (No Evidence of Disease) for 3 years. This woman sought several opinions, conducted extensive research and was aggressive in managing her care with her doctors. While this treatment appears to be the standard of care, it has not worked for all of us.
I spoke with another women the other day who was just diagnosed with uterine carcinosarcoma, stage 3C. She is being treated at a major cancer center that has experience treating carcinosarcoma. Her physician recommended 28 rounds of radiation along with Cisplatin followed by 3 days of Syed Brachytherapy before performing debulking surgery. This patient has expressed an interest in obtaining a second opinion and is very active in reaching out to find the best care. Her treatment regime is one that I have not come across in my studies, but I am going to research it, as she has a similar metastatic pattern to me.
Seek Second or Third Opinions
I have also had the opportunity to speak to several women who are tentative about seeking a second opinion for fear of alienating their doctor. My advise is that any good doctor is going to support you as you look for answers. Let’s face it, we have a deadly disease with a grim prognosis. As you can see, doctors have varying methods of treatment for carcinosarcoma — differences in the treatment of this monster exist as well as patient response, and you need to find a solution that will work for you. Go for a second or third opinion until you feel like your team wants to cure your cancer and you feel satisfied. This is not about your doctor’s feelings, it is about your life.
Committed to Hope and a Cure
I started the GCS Project to build a community of people committed to finding therapies and a cure for this cancer. But also to provide hope. I believe that we need to advocate for ourselves as we manage this disease. There are success stories, and we need to understand why one women is successful, and others are not. Self advocacy seems to be a constant thread among women who are beating the odds.
I appreciate your comments and support. Stay strong.