I had my last surgery on March 24 (my fifth surgery to remove endometrial sarcoma) and part of the small intestine had to be taken out due to the cancer spreading there and mangling part of it. About 10 days before the surgery I had horrible pains, so when they found that during the surgery, it made those pains make sense.
Well, I had those pains again two weeks ago and I also vomited blood that night. So I've been going through a series of GI tests to see if there's an internal bleed. My blood count went way down and I'm seriously anemic (although I feel OK in that area). But all the GI tests showed nothing.
I was told to do a tighter job trying to control the diarrhea (still! Three months later) and acid reflux. Be more diligent on taking the medication and take HIGH doses of iron.
Then I saw my medical oncologist yesterday (as opposed to my gynecological oncologist/surgeon at Stanford). He wants a CT scan now to make sure because every other time I have had pain in the pelvic area--its been cancer. So he doesn't just want to assume this time that it was a one-night blockage. I'll have the scan sometime next week.
I am on Femara now. He said if that doesn't work (i get a reocurrence) we'll move to the Faslodex injections and then if they don't work, he'll get me into clinical trials. It was refreshing getting a big picture plan rather than, "We hope it won't come back so we won't talk about it."
I asked him about going to a Sarcoma Center for a second opinion from Dr. Berek at Stanford as the women on my Yahoo support group for endometrial sarcoma suggested. He said the same thing he's said before--that all roads lead to Dr. Berek as one of the top specialists in this area in the country. (Although he would never ever discourage getting a second opinion).
Then he said--Plus, I would not go to a sarcoma center for the second opinion. The key is to find the doctors who see patients with ESS regularly. He said sarcoma centers generally see soft tissue sarcomas and our sarcoma is so different that a Sarcoma Center is not an automatic referral for us. He said to look for doctors with experience with this cancer.
Then he added, "Plus, you'll go to a Sarcoma Center and they will say--get on femara and if that doesn't work, we'll go to faslodex."
For the first time in 13 years, I am very weary and worry about the cancer coming back. I'm tired of all the tests, the financial costs of this and I'm feeling very whiny. I wonder if its because I'm in that support group and I get dozens of emails a day talking about cancer. I wonder if its because the bill collectors are calling now to pay for the first round of medical tests, etc., and I had one particularly nasty yesterday and Stanford University medical Center sent me a letter denying a problem I had was a problem!
All those things could be adding in to my feelings. Or just that it's been FIVE TIMES. Or that I still don't feel 100% over three months later....
Anyway, thanks for listening.
Mary Schnack