CancerCompass message board discussion started by Andrea F. on 1/24/2004 http://www.cancercompass.com/message-board/message/all,924,0.htm Thu, 24 Jul 2008 00:00:00 GMT Thu, 24 Jul 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ Could some of you veterans of ovarian cancer enlighten me about how accurate the CA-125 is? Will factors other than the return of cancer make the count go up? I had stage 3C ovarian diagnosed in July '02; had surgery, 6 rounds of chemo, then in the spring/summer of '03, the count started to go up. CT scan in August '03 did not show any cancer activity, though the count was in the high 20's. It rose slowly over the next few months to 37 in November; latest one just done on 1/20/04 is at 70. Meanwhile,in the past several months I have been experiencing multiple painful lipomas growing in various parts of the body at a rapid rate & will be checking them out with a specialist. I want to convince my cancer Dr. to do a PET scan. Is this appropriate? Thanks, Andrea Andrea F. Sat, 24 Jan 2004 00:00:00 GMT I was diagnosed with stage 4 in Jan 04. I had 6 rounds of carbo & taxol. My count was at 1859 when I was diagnosed and went to 367 after surgery. When I was done with chemo, it went down to 1.8. I went to my 3 month check up and it had already started climbing. It was up to 187. I had a CT scan done. It did not show anything except for a small amount of fluid around the lungs. Drs. called it microscopic. I had second opinion done. They too did a CT scan and called it microscopic so wanted to start chemo right away so I was not so sick that I could not handle the chemo. I have had 3 treatments so far of carbo & taxotere and my CA125 is now down to 21.8. Go in for another treatment on Thursday. Have never had a PET done and am not sure I would ever need one. CT show up what it needs to and all 3 Drs. that I have say it is microscopic. Will have another CT scan done before next treatment. Shel A. Tue, 18 May 2004 00:00:00 GMT I had surgery for ovarian cancer in Nov of '03 had 6 treatments and my CA-125 has been good but I am not depending on that. I recently have felt like a naughing feeling of pain in the area that I had surgery and my on my pubic bone. Have you experienced anything like this? Marlane Marlane B. Tue, 24 Aug 2004 00:00:00 GMT Dear Andrea: I just read your message, and am wondering how you are doing? I too had ovarian cancer Stage IIIC, operated on one year ago today! Two weeks ago, had a CA125 and it was 53.5... so I am returning to my GYN oncologist January 6th. I am getting ready for another round of chemo, and love to talk to others with similar problem. Also, I am seriously considering going to CTCA, despite the fact I am suppose to have the best GYN oncologist on the East Coast. Wishing you the best. Betsy Betsy Fri, 17 Dec 2004 00:00:00 GMT Dear Marlane: Hope you are doing well. Just read your message. My CA125 is at 53.5 (Stage IIIC, diagnosed one year ago today--had 8 rounds of chemo)> Getting ready for another round I think, visiting my doctor January 6th. Thinking of going to CTCA, despite the fact my GYN oncologist is supposed to be the best on the East Coast. Looking forward to hearing from you. Best always! Betsy Fri, 17 Dec 2004 00:00:00 GMT Dear Shel: Hope you are doing well. Just read your message. I am such a scarety-cat. Anyway had surgery, chemo for Stage IIIC ovarian CA all within the last year. Would like to correspond with you--Hope you are well. Betsy Betsy Fri, 17 Dec 2004 00:00:00 GMT Andres,I had the same cancer as you experienced. My CA 125 never had a high count even when I had cancer. So it does not work for me. I had a friend who wanted and did get a PET scan and from what she said I think yes you should push for it. And ask him or her why they did not suggest it. I am told that a CT scan only shows masses and PET scan is much more effective. That is all I know. Let me know how you do please. My prayers and thoughts are with you. Marlane Marlane B. Sat, 18 Dec 2004 00:00:00 GMT Andrea have you had a PET scan as yet? I was just checking the website and wanted to touch base with you. Marlane Marlane B. Mon, 27 Dec 2004 00:00:00 GMT Hello... I just read your message on CA125 not having worked for you and I wondered: What sort of values are you referring to here? (From what I understand, in your case there were false negatives...?) Thank you. Ovcapatientson Wed, 18 May 2005 00:00:00 GMT CA125 can have a false negative result meaning do not use this test for determination of cancer. It is just one of many test you should have. The CT and Pet Scans are what you need as a follow up to your treatments. Please read this site www.cancercompass.com/cancer-news/1,9400,00.htm With the combination of the CT/Pet Scan you will have the best reading available. Wvgal Tue, 26 Jul 2005 00:00:00 GMT Dear Betsy, My count is also 51. First time I've had this test. I hope I don't have Ovarian Cancer but my grand-mother had it. I just went for an ultra-sound and waiting to go for the results on Tuesday, Oct. 18. But I had an ultra-sound in August and the ovaries looked fine except for a small cyst. I've had Breast surgery 1 month ago and everything was negative. They were calcifications only (fibroids). I hope this is not related. I'm so afraid of OVARIAN CANCER. But I heard that even if the count is elevated it doesn't man it's cancer. How did they discover that it was for you after you had the CA125 blood test then what did they do? This stuff is really scary...I can't sleep at night. need some re-assurance...if there is some.. Thanks, Sue Suziecue Sun, 16 Oct 2005 00:00:00 GMT Dear Marlane, What is a Pet Scan? How different is it from a CT Scan? I just found out my count is 51 and just had to go for an ultra-sound. Waiting for the results in 2 days. Really scared!!! Hope there is a chance that I don't have cancer. The last ultra-sound in August was fine....except for a small cyst. Take Care, Sue Suziecue Sun, 16 Oct 2005 00:00:00 GMT Hi there, I was wondering how everything turned out? I just had an elevated CA-125 which was 42.4 and also need reassurance. Sandiw Fri, 10 Feb 2006 00:00:00 GMT Hi Sandy W. Sorry it took me so long to reply to your message but I've been having trouble with my computer and a lot of stress in my life also. My CA 125 was 52. I had to go for a D&C and an LAPARASCOPY which is an explaratory of the whole abdomen. It ended up that I had a lot of fibroids in the Uterus which was removed and scraped. I also had 2 cysts on the ovaries which were also removed. Specialist said he also scraped the right ovary which had a build-up of fibroid. Those things usually keep coming back. He said that all that CAN CAUSE THE CA-125 TO RISE. After the surgery, I went back for a CA-125 blood test and it had gone down to ONLY 42 which was still high (???). He didn't really know why it was still that high. I have to keep going for ultra-sound every 6 months and a pap smear in 6 months. I'm still not satisfy about that high count of CA 125. Must still be some "bad stuff" (hopefully not cancer) inside somewhere!!!! I'll know more in June when I go back for that test. I also have to go back for a mammogram and an ultra-sound since I had "cancer cells" found in my breast. They removed "calcifications" which is a beginning of cancer but apparently they were removed completely. We'll see if there are still some in 6 months. That is really scary as my mother died of BREAST CANCER AT AGE 49 and I'm 49. How are you doing with your count at 42? Did you go for any more test? Surgery? You should go back and have another blood test done just to see if it has gone down. Keep me posted Sandra, b4n Sue Suziecue Fri, 03 Mar 2006 00:00:00 GMT