Rising ca-125

floridajo

Hello all, it's been a while since I posted...between new tests..and the holidays..well you know. I have a rising ca-125. It started at 5 in March, then 15 in August...had a ct scan which showed no growth but fliud collecting...another ca-125 the end of Nov was 57.8, still my onc/gyn reluctant to treat.He wants a needle aspiration done on the fluid. I am now having monthly ca-125, the end of Dec being 62. I now am having to wait for the 25th of Jan for another ca-125. If it has gone up the Dr. is going to order a ct scan and a parancentisis....as far as I'm concerned I feel like I should be starting chemo, and am afraid that it will get too out of hand if we don't do something soon, what would you do or say to your onc/gyn....who has stated he knows it ovca, but wants to wait..I'm in no pain and am not having any sx. Another reason I'm scared is because I had a sls in June of 05, at that time I had a ca-125 of 9 and clear ct scan....I was found to still have remaining ovca during that sls. Any and all advice is needed...thanks and (((hugz)))..floridajo

mopar

Floridajo:
Welcome back to the board. But I'm sorry to hear of what you're dealing with right now. It is like dejavu' for me. I don't want to scare you, but I think you already are concerned or you wouldn't be writing here. I'm assuming you've had OVCA before? What stage? chemo? surgery? I had Stage IC OVCA in 2000 (surgery & chemo) and again in Feb. 2006 (surgery and chemo). I was feeling fine and nothing showed up on CT except for a lymphocele, which they couldn't aspirate because of it's location. But during surgery a mass was found on the pelvic wall that was removed, then I had chemo. The only indication I had was that the CA125 kept rising (to 30 by the time I had surgery). So my doctor says that blood levels will be my indicator from now on, moreso than CT's, PET scans, MRI's, etc. Just this last month mine went from 9 to 12. So, as you can guess, I'm starting to get concerned (CT and appointment in February).

Having said all of that we know there are MANY reasons for CA125 to rise. Since I don't know your complete situation I can only say sincerely ask your doctor why he is waiting - maybe he has other details that make him confident this is minimal or easily taken care of if need be. Either way, let him know your concerns; maybe get a second opinion? Either way, keep us informed. Be assured that I'm praying for wisdom in this situation for you, AND for peace and strength. I'm also sending lots of (((HUGS))). We'll wait to hear from you.
Monika
P.S. What is 'sls'?

BonnieR

Welcome back, but like Monica said. So sorry you have to be here. You will find much support, caring and knowledge from all of the women here.

Prayers N Hugs Bonnie

floridajo

Thank you both for your help. I will give you a little hx. I was dx. in Nov 04 with Stage 3c. I had a colostomy at that time put in as I had alot of cancer on the bowel as well. I went through debulking and 6 carbo/taxol. In May 05,I had a ca-125 of 9 and a clear CT scan. I arranged a second look surgery and colostomy reversal for June of 05. During the surgery I was found to have disease present not only visable to the eye, but all 15 biopsies as well as peritineal washings, were all positive for OVCA. So I then started 6 rounds of Doxil in August 05. Had a medi-port inserted and finished the Doxil in Jan of 06. Clear ct scans and ca-125 of 7 I was told I was NED. Then in March my ca-125 was only 5!!! I was excited!!! Then in Aug ca-125 15.8. Ct scan showed fluid,nodules of unknown etiology, and a cyst on my right kidney. Then in Nov 06 ca-125 was 57.8, ct scan showed more fluid,enlarged common bile duct and gallbladder. The nodules did not grow. I was sent to a surgeon for the gallbladder. All sorts of ct. scans and mo0re tests done and showed nothing except fluid to be inside of the gallbladder. The surgeon didn't want to do surgery as he felt it was a probable recurrence of OVCA, and refered me back to the onc/gyn. We decided to check the ca-125 in Dec...it came back at 62,barely a rise. So he wanted to wait to do another ca-125 end of Jan. I feel that even if this upcoming ca-125 only goes up a bit that I should be starting on something, because that would be the 4th ca-125 that was higher than the last. Thanks for your help. I believe I will ask him why he is so relunctant to start me on chemo. My prayers to you Mopar that your ca-125 stays or goes down.....smiles and (((hugz)))..Floridajo

Keelie

Hello Floridajo, Your case history is very different from my own. I was diagnosed with Stage 111C in May, 2004. After treatment was over in Nov 2004, a slow, but steady rise went on for over a year, reaching 100 a year later. My doctor felt the increase might be from the incisional hernias that I had, as the cat scans really didn't show much. But, finally, I had the hernia surgery in Jan.2006, and more tumor was found. I was started on Gemzar, didn't work, then went on Taxotere/Carboplatin, finishing that up in late Sept.2006. I'm now three months in remission. Maybe because of your slow rise they aren't as worried. I know they love to put distance between rounds of chemo - both to let your body restore, and to have the chemo give a better punch (less drug-resistance). At this point, I guess I'm glad we waited well over a year to go back on chemo, but that's mainly because so far it has been a successful situation. But, as you know, every case is so different. Like you mentioned, I sure would ask my doctor what his thoughts are........they sure hate to tell us, don't they? Like Monika said, my guess (it sounds like) is that you are in recurrence, but boy, there sure are alot of other reasons for an increase in the CA-125 number - especially inflammation of any kind in the abdominal area, i.e. your gallbladder, etc. All of us are concerned about you, and anxious to find out what your doctor has to say next. Please keep us posted. With prayers and hugs, MichaelaMarie (Keelie)

JanQ

Foridajo, our situaion is alot alike, I was dx in Dec. 03 Stage IIIC surgery debulking ect.. 6 rounds of carb/taxol. In Feb 05 they saw something on the cuff but continued to watch ( it also caused some bleeding) in Nov. 05 he did surgery but no chemo. I was told he would no longer do the ca125 unless I ask for it because he would not be paying attention to that, he would look at quality of life. At the nudging of family members and other reasons I went for a second opinion in July of 06, Wonderful doctor, he said he always watched the ca125 at that time mine had risen to 142, so needless to say he is now my doctor. I just finished 6 rounds of carbo/taxetere, but my numbers are still at 67.We are talking about a break from chemo to let my body build up some and then start doxil.
I am so glad I made the change it has made such a difference, he is a very caring compassionate doctor along with his entire staff.
Hope this helped some, in the end it is your decision.
Jan

floridajo

hi Jan Q....I was also told back in June of 05 that we I will be treated for quality of life...that the fact that I recurred within 2 months of inital chemo took "cure" off the table for me. That is very scary to hear..but I'm still hear and enjoying a good life depite the boogeyman that likes to haunt me!!! Good luck, I'll be praying for you,Keelie,collins and mopar..sending big cyber (((hugz))) to you all...floridajo

Cindy54

floridajo said:

hi Jan Q....I was also told back in June of 05 that we I will be treated for quality of life...that the fact that I recurred within 2 months of inital chemo took "cure" off the table for me. That is very scary to hear..but I'm still hear and enjoying a good life depite the boogeyman that likes to haunt me!!! Good luck, I'll be praying for you,Keelie,collins and mopar..sending big cyber (((hugz))) to you all...floridajo

To All the Ladies here, So many of you have clear CT scans, but then you have surgery and something shows up. I guess I just don't understand how this can be. Then there are some people who have high Ca-125 levels but still nothing on the scans. What a sneaky disease this is. I know Mom's doctor told me that Mom had one ovary the size of a grapefruit. How could that have been missed on so many tests? I wish there was a magic camera that we could all use daily to see what everyone else seems to be missing. I wish you all some peaceful moments. Cindy

frankelyro

Trust your instincts and get a second opinion! You deserve answers, not more questions and doubting. We all have to take active roles in our treatment. Question, ask and trust yourself.
Be well; angels surround you....roann

wild007

frankelyro said:

Trust your instincts and get a second opinion! You deserve answers, not more questions and doubting. We all have to take active roles in our treatment. Question, ask and trust yourself.
Be well; angels surround you....roann

I was diagnosed in June 06 with peritineal cancer stage 1V. I had two tumors on the omentum which were removed. My doctor said they were very small and no other lesions were found. She was optimistic because they caught it early. I did the 5 months of chemo and am now in remission with a CA 125 of 9...it was 189 in June. I feel good, but everything I read about peritneal cancer says its almost always fatal....I need more information if you could help me. How can I be optimistic with a stage 4?