On 6/25/2008
greenasagourd wrote:
Hi all. Another GCT survivor here. You can read a little more about my experience under the thread "Granulosa".
I feel for all of you having recurrence of this cancer. Knowing its rarity, it must be difficult to know the best treatments. I'm praying that you can find the right answers for your situation.
I do have a couple of questions. My entire reproductive system was surgically removed after GCT was found on one ovary. I was told that by taking the entire repro system the most likely place for it to recur was gone. So far, so good for me. How about you? Did you have your entire repro system removed upon diagnosis or just the cancerous ovary?
Also, have any of you had other cancers? I'm now having some breast cancer issues.
I can say that my wife ONLY had one ovary removed (initially), as it appeared to be limited (stage 1). As you can see from my first message, they lost a key staging test and so we didn't know if it was 1A, 1B, or 1C.
Now, some surgeons are conservative and only remove the minimum material needed. My wife's OB/GYN wanted to do a complete hysterectomy, given the original imaging evidence and the symptoms.
But I got a specialist who, in the middle of the operation, when the pathology came back, asked me whether to do a complete hysterectomy or simply leave things be with removing the ovary (and tumor) and the fallopian tube.
I asked what the probability was of a recurrence in the other tissues, especially the other ovary. He said about 1%, certainly over the next 5 years or so. Roughly speaking, this is about right, as it rarely appears on the other ovary especially if it is really a Stage 1A, something that he indicated that day, but there was no really no evidence to back it up -- they lost the test or they purposely said they did the test to protect the doctors who didn't diagnose this earlier.
The idea here is that if the test came back 1B or 1C then there would be a basis for a lawsuit, because it wasn't caught as early as it should have been, especially given the symptoms for four years.
But to the point: The usual reason for NOT taking out other tissue is to preserve child bearing, and this is indeed the reason noted in her medical record although it had nothing to do with my decision.
I decided to be conservative, in a sense, because before the operation, the specialist said the odds of it being cancer were about one in twenty (something I did not really believe, given my conversations with the ultrasound technician and the OB/GYN and, of course, given the imaging evidence and the doppler blood flow). But the specialist, trained at Harvard Medical School, discounted the blood flow and said these things were not precise and he assured us to relax, even encouraged my wife to continue with her plans to go on a planned trip to Alaska with her mother, a three-week trip, that would delay the surgery.
But she decided to have the surgery ASAP. Now, my decision to only take out the left ovary was based on my wife's expectation/hope that everything would be okay, the assertion that the probability of it recurring soon in the other tissues was low, and the MAIN fact that if he only took out the left ovary, she could leave THAT DAY and go HOME.
I did not want her to wake up, told she had cancer, all of her organs removed, and then stay at the hospital for many days, in lots of pain. Besides, she did NOT want to go into immediate menopause, something that would have happened (she was 42 at the time).
Finally, understand that the surgeon said that he could always go back in later and do the complete job, if it was wanted. Certainly he advised doing this at some point, but based on the near-term probabilities, it was not an immediate concern.
End of long, detailed, explanation.
The ONLY other cancer concern was a uterine polyp, after the initial granulosa cell cancer. The OB/GYN had found it on imaging, said it was very unlikely to be cancerous, but when she took it out that day, was EXCEEDINGLY concerned that it was cancer as it really did not look good at all, and fell apart easily. She had done 600 of these things and it was the worst looking one of the bunch, with one of the others of that 600 being cancer and also looking bad.
We waited, anxious beyond measure, for a whole week for the pathology report and luckily it turned out to be negative. Hearing that news, that day, at that particular time was the happiest moment of our lives the past four years. The recurrences, the chemo, the side effects the extremely poor prognosis now, the the the the the the.... has been one nightmare after another.
Similar, surely, to most everyone else who has posted on this board.
Best Wishes, Always, to Everyone,
Earnest One