Rising CA-125

[katditty]

I was diagnosed with stage 111c Ovarian Cancer in January 2006; I had had severe IBS for many years and any OVCA symptoms I might have presented with were masked by IBS. I had optimum debulking surgery in Jan. 06, then complications in Feb. postponing my first chemo. Then 2 courses of vascular chemo w/carbo and Taxol followed by 4 courses interperitonial chemo w/Cisplatin & Taxol then 2 more vascular courses, ending in Aug. 06 CA-125 started out at 623 pre-surgery and ended at 10, which left my husband and me very hopeful about my outcome. We just got back from a 3 month road trip in Mar. during which I did not have any CA-125 levels drawn. In Dec. 06 before we left, my CA-125 was 19; in march it was 34; Last week's draw, it was 46.2. CT scan in Mar. showed some fluid in abd. cavity, some fluid in lungs, and my Gyn. Onc is watching a lymph node in my groin which has remained the same size since Sept. 06. She says she is not concerned about the steady rise in my CA-125 level; I have such severe IBS and have been having a "constant roller coaster ride" of IBS episodes since Jan.;she feels that this is what is causing the rise in CA-125 levels, and that we should just keep doing monthly CA-125 tests until I see her again in mid-June. From reading all the postings here, I can see that my levels are not terribly high. We have been concerned about what treatments might be available if I do have a recurrence. Now I see that there are going to be options, but I am worried anyway; I had been feeling so much better until Jan., then the IBS episodes started again, and with the exception of the horrible 3 litres of ascites fluid in my abdomen just before I was DXed, I feel just about how I did when I was DXed. Should I be worried?  I guess I'm just scared and looking for some support from others who have been here. Thanks for listening.

[katditty]

It is a little difficult to go 3 months at a time between follow up appointments.  I am still having CA-125 draws monthly because of the continuous rise, but my GynOnc doesn't seem concerned, given my history.  But today is my 53rd birthday and I was just looking back through my journal over the last year, and all of the "IBS" symptoms I was having just prior to the DX, I am having now, except that I don't seem to have the ascites.  So I have trouble maintaining a positive attitude, remembering what I had to go through to get the stage IIIc DX in the face of the years of IBS symptoms, and how I felt just before the DX.  Last year on my birthday, I was facing my 2nd IP chemo in a few days and I couldn't even remember, until I asked my husband to help me, what we did for my birthday last year, I was so out of it from the surgery, chemo, etc.  Today we went out to lunch at our favorite restaurant and I had all my favorites there, and tried to look on the up side: her I am, a year later, and still going strong.  But it is a bit tense right now, wondering what the next CA-125 will be, and what my GynOnc will find when I see her in June.  Thanks for being here, everyone!

[pjet]

From what I understand, inflamation can cause CA125 to fluctuate.  Usually a CA125, a pelvic physical and ultrasound, CT,or PET are used to track ovca.  It certainly is a worry.  I have chemo, CA125 and a physical every month.  There will be no more CTs for me.  Going three or six months between followups would probably cause me some angst.

[Ang80]

My mums CA125 was 512 when DX March 2005 with OVCA stage 3. Then dropped to 12 after treatment. It stayed at 12 until Jan 2007 when it rose to 21, and then in April it was 26.
The oncologist is not worried by this and has said that its normal and can vary. Mum has anal fissures which can cause inflammation but not sure whether that would cause the rise in CA125. Her Dr now doesn't want her to go back until Oct as she has been in remission for 2 yrs.
I am worried by this, but from what I have read CA125 are only a small part and us affected by OVCA worry to much about them.

Ang

[milashka]

I had struggled with IBS-Constipation for 2 years before being diagnosed with stage 3C OvCa November 2005. I am sure the two are unrelated but IBS masked the OvCa and now I wouldn't know when the cancer is back because the IBS persist (bloat, fullness, etc.).

It looks like at least you are responding well to the treatments. I know patients whose numbers keep rising during treatment. And feeling well is also important! My Dr. always wants to know how I am feeling, must be an important indicator.

My CA-125 fell from 960 pre-op to 13 post-chemo and has remained in the 9-15 range for 1 year. CT Scan in March showed "tiny amount of fluid in pelvic area" and oncologist is not worried about it at all - he says probably normal.

Can IBS really cause a rise in CA-125? Can it also cause fluid?

[pjet]

It sounds like your Dr. is on top of everything and looking after you well.  I am sorry you have to deal with the IBS on top of ovca.  It's hard to be positive when you are feeling down.

I just wanted to comment that the CA125 number is rather an individual thing.  Some women progress nicely with CA's in the l000, others in the 100 but we can't compare ourself to them.  Mine goes up and down by two or three points at a time.  I was stable at 13, went to 17, 34 and into treatment because I had developing cysts before I had completed initial treatment.  Now a year later I am at 44, went up to 46.  I was rather devestated as I had a good month and hoped for it to go down.  The Dr. told me they would be concerned if the number doubled, which it didn't, and I was glad of that bit of information.  

We try not to worry.  Don't the grandchildren do a lovely job helping us refocus, bless those little darlings!

[katditty]

Thank you for sharing.  Sometimes I feel so frustrated about the whole situation.  Most people I know had never even _heard_ of Ovarian Cancer until I was DXed, and they all seem to feel that now that the initial chemo is done, I'm all "fixed".  Most days, I do alright, and have been able to appreciate it when I do feel well and have energy; I spend a _lot_ of time with family and friends, especially my granddaughters, and I get out as much as I can, and generally have a very up attitude.  But when I am down with IBS, it is hard to keep persepctive, and if I take the meds that help with the IBS, then I also become more tired and my thinking gets a bit fuzzy.  It's a fine balancing act, everyday.  that's why I appreciate the input from everyone at this forum so much; it really keeps me on a more even keel.  Thanks again, and all the best to you.  My thoughts and prayers are with you.

[katditty]

Thanks to you both for your suggestions.  I have not had a PET scan or a radioactive scan but it sounds like I should be asking my GynOnc about those. I really appreciate this forum, and all the information people share here. I will follow up on these suggestions.  All the best to both of you.

[Helmar]

Hello... your 'history' sounds similar to mine. I was told for almost 9 months prior to dx that I had IBS, gastro etc. too. It's disheartening to be told finally, that it's Stage 3c Ovca, but now raised to Stage 4 because of bowel involvement. My CA.125 fell to 12 after my operation and subsequent chemo treatments, but that only lasted for a few months and then it started to rise again. I've been on chemo 'off and on' since for over 2 years. My CA.125 reached 7500 in mid December, when my Oncol put me back onto Taxotere/Carboplatin. Since then it has dropped to 360. Even though my CA.125 was extremely high, I felt very well, and still led an active lifestyle. My Oncol. tries to instil in me that the numbers are just that...numbers, and we should gauge how we are, on how we feel... that is, no pain, no discomfort, good appetite, and able to enjoy life. I enjoy all of these things, so I try not to be too concerned about the high CA.125 but I must admit, it's nice to see the numbers drop. The CA.125 is not a good marker for some of the girls, so perhaps if you are concerned, you could ask your Doctor to have some scans done. I have Ct/Pet done together.
I wish you all the best....hugs...Helmar..

[SimplyStar]

With a slow rising CA125 like yours I might suggest  a radioactive scan, my daughter had one that found 3 small lesions on her abd wall, this was a recur after 4 1/2 months, her CA125 went from 6  to 12  to 34  to 72,  her 3 previous scans came back clear,   but the radium makes the small lesions "glow" She is now in a clinical trial and because it had not spread to any organs they say she has a very good chance of getting rid of all exsisting cells now.  Time will tell I guess.

[rmarie]

I know what your are saying with this roller coaster ride we are on.  I found an article that compared the psychological effects surviving cancer, long term to post traumatic stress disorder, we go from test to test, and then hopefully from year to year, hoping the cancer stays away.  Me I wish I had had one of the other types, with the good statistics.  
I also was a stage 3 C diagnosed in 05, and just recurred.  I have had a second debulking - successfully - and am going to be starting on carboplatinin and doxil next week.  The CA 125 is a non specific riser, so an inflammation can elevate it.  You can have it repeated in a month, did they do a PET scan?  I had one done after my initial ct pelvis/abd, showed tumor.  Good luck, to me the important thing now is keeping as much normalcy in my life and live each day as a gift.