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Ovarian cancer, clear cell 1 C - update after finishing chemo and hope for advice
Hi,
I have posted before, about 5 months ago, after being diagnosed with stage 1C, clear cell ovarian cancer. This was after a total hysterectomy surgery for a massive ovarian cyst, thought to be benign, but found from histological exams after the operation to be a fully malignant cancer. The cancer was confined to one ovary only, but the cyst broke during surgery, thus the staging as 1C.
Thank you to all of you who supported and encouraged me then. I have now done the routine 6 cycles of carboplatin / taxol (one day every 3 weeks) and finished last week. I was really looking forward to the end and felt optimistic, especially as the chemo, though hard, has been bearable. However, all this changed suddenly. Just had my last chemo. For my last check up before the chemo I happened to see a different consultant, who is actually the head of department. When speaking about the future and chances of recurrence, he was so much less positive that the ones before. I had been told, both by the oncologist surgeon and by the oncologist with whom I discussed the chemo treatment (and who had been the main person I saw during the chemo), that although clear cell ovarian is aggressive and might come back, even after two months, my chances of non-recurrence were very high, as much as 85% to 90%, because it was a stage 1 C (ie caught early). So I was reasonably optimistic and looking forward to end of chemo. I understand that the CA125 are normal and been so all through the chemo (although they were still slightly elevated before the first chemo). The oncologist had told me that she had expected the CA125 to be normal anyway as all tumor was removed during surgery (except of course for the microscopic particles due to the cyst rupturing) and the chemo was what they call 'adjuvant'; ie to increase the chances of the 5 years target with no recurrence.
The last oncologist I saw told me that while 1c is better than most, it is still more likely to come back than not and often it comes back quickly, within 1 year. I was really shocked and find it difficult to feel ok now. Quite devastated in fact and really scared of the scan and check up due in 8 weeks.
I cannot understand why such contrasting interpretation by 3 senior consultants in the same team. I wonder if may be they had tried to be encouraging and now the last one is telling me more of the truth? Also I cannot find much on clear cell. Is this more aggressive or more likely to come back?
Any thought would be really appreciated. Also is any lady there with clear cell 1 C who has not had a recurrance? And, if you had a recurrance, what happened then?
A hug to you all
Valentine
I have posted before, about 5 months ago, after being diagnosed with stage 1C, clear cell ovarian cancer. This was after a total hysterectomy surgery for a massive ovarian cyst, thought to be benign, but found from histological exams after the operation to be a fully malignant cancer. The cancer was confined to one ovary only, but the cyst broke during surgery, thus the staging as 1C.
Thank you to all of you who supported and encouraged me then. I have now done the routine 6 cycles of carboplatin / taxol (one day every 3 weeks) and finished last week. I was really looking forward to the end and felt optimistic, especially as the chemo, though hard, has been bearable. However, all this changed suddenly. Just had my last chemo. For my last check up before the chemo I happened to see a different consultant, who is actually the head of department. When speaking about the future and chances of recurrence, he was so much less positive that the ones before. I had been told, both by the oncologist surgeon and by the oncologist with whom I discussed the chemo treatment (and who had been the main person I saw during the chemo), that although clear cell ovarian is aggressive and might come back, even after two months, my chances of non-recurrence were very high, as much as 85% to 90%, because it was a stage 1 C (ie caught early). So I was reasonably optimistic and looking forward to end of chemo. I understand that the CA125 are normal and been so all through the chemo (although they were still slightly elevated before the first chemo). The oncologist had told me that she had expected the CA125 to be normal anyway as all tumor was removed during surgery (except of course for the microscopic particles due to the cyst rupturing) and the chemo was what they call 'adjuvant'; ie to increase the chances of the 5 years target with no recurrence.
The last oncologist I saw told me that while 1c is better than most, it is still more likely to come back than not and often it comes back quickly, within 1 year. I was really shocked and find it difficult to feel ok now. Quite devastated in fact and really scared of the scan and check up due in 8 weeks.
I cannot understand why such contrasting interpretation by 3 senior consultants in the same team. I wonder if may be they had tried to be encouraging and now the last one is telling me more of the truth? Also I cannot find much on clear cell. Is this more aggressive or more likely to come back?
Any thought would be really appreciated. Also is any lady there with clear cell 1 C who has not had a recurrance? And, if you had a recurrance, what happened then?
A hug to you all
Valentine
Valentine,
Your doctors have varying interpretations because their experiences are different, and none of them know -- they can't tell the future. Clear Cell is a tough cancer to treat, but catching it early is a very good thing. Outcomes are highly individualized, and none of us know when or if a recurrence will happen. I am clear cell 1c, and have been in clinical remission for 7 months.
Initially my doctor told me that if I did have a recurrence, it was likely to be 10-15 years out. When my CA-125 levels failed to fall after surgery, and then first chemo, it looked like I would be platinum resistant and have to immediately start second line therapies. The levels did fall, but have never gotten below 10 which is considered a prognosticator for long term remission. My doctor doesn't know what to say, because he said I'm "different" in that I'm not following any of the usual patterns that are seen.
I'm no longer looking for guarantees, and taking it one day at a time. I am grateful for the days when I feel good and am not having to take treatment. I don't want to give up these good days to worry about something that may never happen. When/if it does, then I will go on to the next treatment, and there are lots of them out there, and lots of brave women who at this very moment testing new therapies. By the time you need second round chemo, if you ever do, they may very well have a targeted therpay specifically for clear cell..
Good luck to you. Hang on to the positive.
Minnie
Your doctors have varying interpretations because their experiences are different, and none of them know -- they can't tell the future. Clear Cell is a tough cancer to treat, but catching it early is a very good thing. Outcomes are highly individualized, and none of us know when or if a recurrence will happen. I am clear cell 1c, and have been in clinical remission for 7 months.
Initially my doctor told me that if I did have a recurrence, it was likely to be 10-15 years out. When my CA-125 levels failed to fall after surgery, and then first chemo, it looked like I would be platinum resistant and have to immediately start second line therapies. The levels did fall, but have never gotten below 10 which is considered a prognosticator for long term remission. My doctor doesn't know what to say, because he said I'm "different" in that I'm not following any of the usual patterns that are seen.
I'm no longer looking for guarantees, and taking it one day at a time. I am grateful for the days when I feel good and am not having to take treatment. I don't want to give up these good days to worry about something that may never happen. When/if it does, then I will go on to the next treatment, and there are lots of them out there, and lots of brave women who at this very moment testing new therapies. By the time you need second round chemo, if you ever do, they may very well have a targeted therpay specifically for clear cell..
Good luck to you. Hang on to the positive.
Minnie
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