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With 95% E/C,and no V/I or L/I,I was told I had a 40 % chance of relapse during my original surviellance. I was also told that most relapses (85 % I think he said) of E/C occur within the first year. Taa-Daa !......pretty well spot-on what happened to me.
Teratoma won't cause a relapse. But you're correct it might very well mean chemo and RPLND if it spreads. The RPLND is a nasty operation but it's the chemo that causes long term problems.
Both doctors indicated that 3 - 4 rounds of chemo was significantly worse than 2, in terms of short and long-term side effects. I am not too worried about the short term effects, but the long term ones (like heart trouble - I have a family history) worry me.
Considering there's a fair amount of teratoma, would relapse be likely to mean RPLND as well as chemo?
robert:
I know it won't be easy but focus on the fact that you have a 60% chance of being cured. I agree with Scott, save the chemo for when your sure it's needed. Wheather you get the chemo now or a bit later the cure rate will be the same.
Did you ask him to explain why surveillance is a bad idea? If you stick to the schedule, you'll catch a recurrence early and have chemotherapy only if and when you know you need it. Even if the 40% statistic is accurate, I'd take a 60% chance of not needing chemotherapy over a 40% chance of needing one more round than you're being offered as adjuvant therapy.
I was diagnosed with TC and had right IO on Oct 20. Tumor was 80% embryonal carcinoma, 15% teratoma, 5% yolk sac. There was no lymphatic or vascular invasion.
The first doctor I went to, who is the head of urology-oncology at UT Southwestern in Dallas, said that my risk of recurrence was about 25% and that surveillance was an option. He said if there had been lymphatic or vascular invasion, my risk was 40% and surveillance would be a bad idea.
I went to MD Anderson in Houston for a second opinion. The doctor there - who agrees there is no invasion - says my risk of recurrence is 40% and surveillance is a bad idea. He says that embryonal carcinoma puts me in the 40% risk category. He wants me to do 2 rounds of adjuvant chemo.
I've searched some online and can't find anything that directly supports the second doctor's estimate of 40% risk of recurrence for embryonal carcinoma without lymphatic/vascular invasion. Can anyone shed some light on this?
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