Topic: Hello from a new member
I am 58 and was diagnosed with stage 4 metastatic ICC in August 2011 with mets to the lungs and ovaries. I live in Austin and receive chemo at home but my doctor is Dr. Javle at MD Anderson. I have a plastic stent that I have exchanged every 2-3 months. I was on Gem/Cis from Sept 2011 -Jan 2012, radiation and Xeloda Feb-March 2012, and back on Gem/Cis since August 2012. After radiation I had a complete response in the liver, lungs unchanged but increase in size and SUV of the left ovary. Originally I had increased metabolic activity in the left overy worrisome for metastasis. The scan in May after radiation showed the left ovary measured 3.9 x 3.5 with SUV of 6.5 and mild uptake in the right ovary. The scan in August showed 3 new spots in the liver and both ovarian masses had increased in size and SUV. I have asked about having the ovaries removed since the beginning but Dr. Javle said surgery can cause the cancer to spread more and they had not increased that much. My Austin oncologist thought they should come out and I went to see a surgeon who also thought they should come out but I went with Dr. Javle's recommendation to leave them alone. I had a scan a couple of weeks ago. Liver is stable to slightly improved. Left ovarian mass still increasing and right is basically the same. Dr. Javle discussed my case with the team and he now says it is up to me if I want to have the ovaries removed. He said if I was having pain and symptoms he would definetely say have surgery but since I'm not he now says he does not have strong feelings either way. Everyone thinks it is metastasis and not an ovarian primary but no way to know for sure without taking them out. Now what am I going to do? They obviously are only going to continue to grow and possibly cause pain and problems but as he said, a hysterectomy will not change the overall outcome. I have chemo Friday and will discuss again with my Austin doctor. I have an appointment to see the surgeon the 13th. I am very frustrated and would love to hear your opinions.
Other than chemo fatigue I have been doing very well and continue to work except for taking a few days off for chemo. My latest CA 19-9 is 47.5
I have been reading the boards for a while and I know joining will provide me with lots of support!