rising ca 125 in uterine cancer carcinosarcoma

[rbradle]

I have stage 3c carcinosarcoma of the uterus which is being treated like ovarian cancer. I had  taxol and carboplatin 6 cycles.  My ca 125 trended down from 40 post surgery and  pre chemo to 8 after the 6th cycle. and then7 two  months later.  Now 4 months after the end of chemo it went back up to 16.  I have no symptoms and exam was neg and PET/CT was NED in 1-11.  I was told by an onc in Texas if I had a recurrence it would be real bad news and I will  die so I am very concerned about this.
I went to a different onc in a different state for treatment, but I  keep thinking about this comment from this second opinion. I am not supposed to have this level repeated until 6-11.  Are there similarities between this type of cancer and ovarian cancer regarding trends in ca 125?

[rbradle]

Thanks so much for your post .  I did have a repeat ca 125 1 week later.  I just received the result and it went from 16 to 17. I am trying to focus on other things. I did receive a response from one of the doctors on the forum who also spoke of trends and that also gave me some encouragement.  I am new here and I was trying to look at her response again, but I have not been able to locate it. Regarding the doctor from Texas, he is from a big institution # 1 cancer institute and he has  very little class or compassion.  I won't be going back there.  I have located  a wonderful onc from Johns Hopkins.  But as all my oncs say this is a very rare cancer and they are not to sure about how this tumor will react.
  You really did help me with your encouraging words.  I really appreciate you taking the time to respond. Thanks again.  Happy holidays.  Lynn

[nyc lady]

Wow, what doctor would say something like that.....I would disgard that opinion, and if you still want, then go for a 2nd opinion.

I know nothing about uterine cancer so I cannot comment on similarities, etc....but, as for the rise in the CA125, with ovarian cancer, the rise needs to be a trend....one test does not make a trend...and your CA125 could be off because of something as simple as a tooth infection....are you scheduled for another CA125?  

The most important thing to remember is that no one - not even a doctor can predict the future.  While there are trends and stats, stats are just numbers and there are people that beat the odds.  Right now, keep living, enjoy life.....as long as you feel well and have a fight in you, you will keep going.  

Please keep in touch, let us know about your next test...and hang in there!!!

Be well,
Pam