I had my sixth surgery for endometrial stromal sarcoma (ESS) last Tuesday, April 13. It is my third surgery since February 2007.
Fortunately, the tumor was again at the top of my vagina (three have been there and three have been in the pelvic area) so they were able to remove it vaginally, without doing a laparotomy (cutting through the abdominal muscles to access the area).
I feel ridiculously great just six days later and I’ve pretty much felt this way since the surgery. I didn’t need any pain medication at all. I am easily up and about and my head has even cleared from the anesthesia. I’m not sure I can find any reasons not to get back to work!
My previous surgery was March 24, 2009. This is the fastest that the tumor has ever returned. And we know it probably started growing sometime last Fall. In November I noticed a constant urine leakage. Troublesome enough that I had to start wearing a pad. Many women in their 50s encounter this problem so I was put on a medicine that would tighten up the uretha leading into the bladder and hopefully stop the problem. It didn’t. In fact, the leakage kept getting worse.
In early February I went to a urologist that did the uro-dynamics study and the ultra sound inside the bladder. Ugh. Both of these tests were awful to go through. The good news was they found nothing. The bad news, for the leakage problem, was that they found nothing.
However, an abdominal CT scan that they did found the tumor. So in March I went back to Stanford to see my gynecological-oncologist/surgeon. He found the tumor, growing down into the vagina, and quite large. He said the wall between the vagina and bladder is paper thin so it was clear this tumor was pressing on the bladder and causing the issues.
I have $3,800 in out of pocket bills from the urology tests. I am so paranoid about being paranoid that it cost me dearly in time, emotion and in dollars. I don’t want to have something go wrong and panic thinking “my cancer is back.” But I have learned—if I have anything going on in the pelvic area—check first for another tumor. After all, I do have quite a history to justify doing that.
About 18 months ago before my fifth surgery I was having bowel problems and went through all the tests and then—yep, it was a tumor that had spread to the intestines causing those problems.
So I need to quit being paranoid about being paranoid. Rule out a tumor FIRST and then do other tests as needed.
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Mary,
Thank you for this wonderful post.
I think you are mistaking paranoia for worry, based on experience. If nothing was ever found, if you always ended up being perfectly healthy, then I would agree on the paranoia.
But (and I don't want to make you even more 'paranoid'!) you appear educated, assertive and sensible. You have a history of tumors and a history of multiple surgeries. You have every right to worry.
What I wish for you is that you didn't have this worry at all. I think you're doing everything right, I just wish you didn't have to deal with this. And your out of pocket expense is worrisome. It's always so upsetting, knowing people are being ruined financially because they are sick through no fault of their own.
Keep checking for those tumors and don't be hard on yourself - you are doing the best you can, and doing a great job of it!
Mary, do you have plenty of family and friend support? Are you in a support group with people undergoing the same medical issues?
April 20, 2010 - 2:03pmThis Comment