CA-125 Rising

I don’t know if this is any help at all. I have Ovarian cancer too, Stage 4. Here’s my experience with the CA125 test.
- I started off over 1700 but after hysterectomy, cancer debulking, and chemo, it went down to the low 20’s and has stayed there for over a year now.

- After the cancer debulking, the surgeon told me that he had had to leave several of the tumors because of their location but he felt chemo would take care of them.

- I started just Avastin after chemo and had been told I would be given that for 2 years. But after a much shorter time, my oncologist used the months of a low CA 125 to declare me cancer free and was going to stop treatment.

- I asked for a PET scan first and discovered that chemo hadn’t been successful and I still have several tumors in my abdominal area and one in the lining of my lungs. My cancer surgeon said that for me, the CA125 isn’t an accurate measure of my cancer.

- I’m still on Avastin 6 months later, it’s kept the tumors from growing, and my CA125 is still in the low 20’s even though I have cancer tumors.

After being diagnosed and learning about the CA125, I had talked to my GP and asked why they don’t give it with our yearly physicals and blood tests. She said because it’s too unreliable. You’ve probably read that. For me, I can’t depend on the CA125 and I needed to get imaging tests. BUT, I can totally understand why having it rise is really concerning you. I hope someone has a more helpful response that’s more directly related to what you’re encountering with melanomas. Keep asking questions. Keep advocating for yourself to make sure you’re getting the best medical care you can get. Since I was diagnosed, I’ve talked to too many women who had oncologists who made pretty major mistakes. I hope you’ve got a good one. 🙏🏽

The reason CA-125 is not a good screening test for all women is because so many other things can cause it to rise, and ovarian cancer is relatively rare. (See list.)
CA-125 is used to assess women who already have ovarian cancer. That’s because if you have a history of cancer, it’s more likely that a high CA-125 is due to the cancer, and not something else. But if you don’t have a history of cancer, one of the more common things on the list is much more likely to be the cause.
For a woman with OC and a rising CA-125, the next step would be a CT or a PET scan. You had one recently and it was clear. This is very reassuring.
If there were only a few causes, and if OC were more common, CA-125 would probably be a good screening test for all women.
This is why mammograms are a good screening test—breast cancer is common and the list of things that can cause an abnormal mammogram is short.
I don’t see melanoma in this list. But ask your oncologist and your dermatologist if melanoma sometimes causes CA-125 to rise.

@jo72 :
This is very helpful information. It is consistent with what I have learned. The CA125 is not a definitive indicator of ovarian cancer as it is less/more sensitive in picking up cancer signals in some women than in others. As well one’s baseline pre-cancer can also differ. If your results are consistent over time but suddenly change it would signal cause for further investigation. I also agree that you are much more likely to get appropriate care in a major cancer clinic that is a teaching center than you would in a general hospital.
@jaymuss55: I would suggest getting an expert opinion as the original opinion that chemo can take care of the remaining tumours was incorrect in the first place. Btw, is there a theory about how or why your melanomas have sprung up?
It is really important to ask good questions and if the answers leave you wondering, don’t wait. See someone whose answers make sense. I wish you well and hope that you can get what you need.

Thank you for responding. I have asked my dermatologist and oncologist if the melanomas and rising CA-125 could be connected. Answer is pretty much, not really. I think the main reason I'm getting the melanomas is because of my weakened immune system. As a youngster, I got bad sunburns (burn, blister, peel), so I am sure that didn't help any. My oncologist is monitoring the CA-125, but relies more on imaging. I used to get CT scans after three cycles of treatments, but now they do PET scans after three cycles. My PET scans have all come back with no "activity", and no new implants found. Previous CT scans showed I had 4 or 5 tiny implants (pea size), but they are either gone now or are so small they are not showing up on PET scan. I am still searching for a cause of rising CA-125, but in meantime, am pleased with good PET scans. I still do chemo every 3 weeks, and thankfully, I have not had problems with it. The only one I had trouble with was when I was on Doxil, which they had to reduce the dosage on twice to the minimum, as it basically made the palms of my hands look and feel sunburned, the skin peeled, and I could barely bend my fingers. Was glad to get off that when they started me on my current "cocktail" of Avastin, Keytruda, and Cytoxan (Cyclophosomide (?)). Had to come off Avastin from October until early February, while have melanoma surgeries, one in November and the other in January. Will probably have to come off again when they remove ones just found.

Thank you for responding. I have been on Avastin for little over a year now, along with Keytruda, and Cytoxan. Once I started on this "cocktail", my CA-125 was in normal range until October last year, when the melanomas popped up, and it is continuing to rise. I get PET scans after three chemo cycles, and they check the CA-125 every cycle. I try not to worry too much about the rising CA-125, although it has gone up considerably, but try to focus on the PET scans being good - no activity or new implants. I had the debulking done in May 2022. Things looked good for a few cycles, but by August 2022, the CA-125 started going up so my oncologist started me on my second "cocktail" of chemo drugs. That worked for a while, but in March 2023, on my birthday of all things, CT scan was done and it showed small growth in size of a few remaining implants that were still there. That is when I was switched to my current regime of Avastin, Keytruda, and Cytoxan, which has worked well for me. I have been blessed not to have suffered any serious issues with chemo drugs, other than when I was on Doxil, which made my hands like they were sunburned, and the skin peeled and I was unable to bend fingers much. Other than fatigue, I feel okay most of the time. Sometimes it's hard for me to even realize I have this horrible disease going on inside of me. I try to remain positive, as there is so much negative stuff out there on length of life after diagnosis (which is why I try not to read much of it), but I remain positive, as I have a friend, who has a friend that was diagnosed with Stage IV OC, and she is still going at roughly 14 years post her diagnosis, so I do not give up hope. I admit, when diagnosed, I thought my life was over and I was devastated. I had worked with a woman who was diagnosed with OC back in 1998 and she died in 1999. I did not realize how far they had come with treatments. My first visit with the oncologist after diagnosis made me feel so much better, when I was told it is treatable. I give credit to God for giving the doctors the knowledge to know the best treatment for me, and prayers of family and friends. I know it is in His hands so I try not to dwell on it. But, I still seek an answer for rising CA-125...

I’m with you on the remaining positive part. When you don’t know how much time you might have left, you definitely don’t want to spend that time feeling down and lost. I think one of the morals of your story is that when you have something like Cancer, never let them set a medical test on your birthday, or any other special day.

Avastin only has kept my tumors from growing for much longer than it usually does. My oncologist has pointed that out. Thanks pal. I’m going back to see all my cousins in Minnesota at the end of July. I’m having a CT scan to check the tumors shortly before going. I have to admit that I hope I don’t find out that the tumors have quit responding to the Avastin before I go.

Thank you for the information on the repeat chemos. I have basically been told that when the tumors start growing again that there are a few other chemo drugs they can try but that my chances of surviving much more than another year or so are pretty slim. I’m working on preparing for the worst while hoping for the best and not giving in to that prognosis. I’m doing by best to stay positive as well and to maintain the belief that there is more hope out there than that. 🙏🏽

Are you able to see a different GYN oncologist? When I was first diagnosed, I went to see a well-known and respected (in our area) regular oncologist. He was the first to advise me OC was treatable. He felt I needed to be treated by a GYN oncologist and referred me to one. This doctor also reassured me and advised me OC is treatable. He was wonderful. He had been in our area about 11-12 years, but last year moved back to Florida, where he was from, to help care for his aging mother and be closer to family. Before he left, once when he was out of town, I saw another doctor in the practice. She was NOT a fit for me! I was in tears after seeing her. Everything about my condition that I had viewed as a positive, to me, (cancer seemed to be contained in the pelvic area; not in lymph nodes; being diagnosed at Stage III rather than Stage IV - well she managed to smack down everything. Even went so far as to comment survival rate was 2-3 years. Talk about a gut punch! I had never asked for and never been given any kind of time line. I don't want sugar coating, but she was just a little too direct for me. When I saw my regular oncologist the next time, just before he left, I advised him of my experience with the other doctor. I was in tears just telling him about it. He was very comforting and I told him I did not want her to be my doctor when he left. I had talked with one of the nursing aides in the infusion center about it, and without even naming the doctor, she knew who I was talking about. She did some subtle checking to see which other doctor was considered good and gave me her name. The next time I saw the doctor who was leaving, I asked him to request to have my case assigned to her. He told me she had attended the same schools as he had, and in so many words said she had a similar "bedside" manner as himself , and had a good feel in dealing with patients and knowing how to talk with them and how much they wanted to know. He took care of it and I was assigned to her and I have been very pleased with her.
With all that, I have never been told Avastin only worked for a short period of time, so I can't really comment on that. Have you done any research or looked into supplements that are helpful in treating cancers? There are some out there. I will mention, when I started chemo after my surgery (debulking), I agreed to participate in a clinical trial drug. You, nor your doctor knows if you are getting the actual drug, or a placebo. Didn't work for me! Had a reaction after first dose (back muscle spasms), so I suspected I got the actual drug. Next treatment, got it again, and the reaction was worse - back muscle spasms, uncontrollable trembling, dry heaves. Obviously I was not getting a placebo! They immediately decided not to have me take any more doses (I wouldn't have any way). Look into clinical trials. Unfortunately, they are not available everywhere, and even my hospital hasn't had any others to offer. My original oncologist was actually the one who got the clinical trial approved this area. If things start to go downhill for me, we will travel to a NCI certified facility, that is a few hours away from where we live. We did go there for a visit last year to see one of their oncologists, to get my name in their records. As long as things are going okay for me, we have opted to stay local. Try to stay strong (I know it's hard), keep the faith and trust in God, and don't be afraid to ask for prayers from others. I truly feel God has listened to the the prayers of friends and family, and people I don't even know, where I've been put on prayer lists at churches. I always remind myself - every day we have, is a gift from God.

I’m really hopeful about my appointment at the UC Davis Cancer Center down in Sacramento. I checked the center and it was given high ratings by different medical entities for whatever that’s worth. We have only 2 oncologists in my rural community. I tried both and I got different reasons, think both are awful. And I’m not a hard-to-please person at all. I have two disabled children and I have been really, really happy with numbers of different doctors they’ve had over time.

The oncologist surgeon involved in my treatment is about an hour away and I see him only every 6 months for a check-in. For this next check-in they assigned me to see his PA which I’m not happy about. I’ll wait and see how it goes.

I sincerely hope that at UC Davis I feel like I’m being seen by competent oncologists. I don’t know if they will offer me some hope. At this point, I’ve essentially been given none, so what do I have to lose?

Thank you so much for your input. Each time I hear from someone else dealing with this, I feel that I benefit. 🙏🏽

Regarding seeing a PA rather than the doctor, that seems to be the norm in my area (for any kind of doc, not just oncologist). When I was first diagnosed, through the debulking surgery, and for several chemo treatments after that, I saw my oncologist. After that, I always see the PA before treatments, and only see the oncologist after a scan has been done. I think if I insisted on an appointment with the doctor, I could get it though, but I'm okay seeing the PA as I know any concerns will be discussed with the doctor. My CA-125 has been rising steadily since Oct last year, and no explanation so far. They tell me they are monitoring it, whatever that means. My doctor says they rely more on imaging, and since my last three PET scans have shown no sign of activity or new implants, she does not feel we need to change the course of treatment. But after my last CA-125 test last week, where it has risen to 295, I am concerned. I haven't done it yet, as I want to formulate some questions, but I will be sending a message to her on MyChart. Since I'm dealing with OC as well as melanomas that keep popping up (8 since October), it's a double whammy. My dermatologist has no explanation for so many melanomas coming out, as I have seen her regularly every six months for years for upper and lower body checks. I am now seeing her every 3 months (going for biopsy of four moles next week while still waiting to see surgeon for two she found last month). My oncologist does not feel there is any connection between OC and rising CA-125. I've read enough to know that a weakened immune system can cause melanomas, and that is probably what is driving mine (been on chemo over two years, plus got bad sunburns in my youth). I am still looking for reason for my rising CA-125 and haven't found an answer yet.

Sometimes it’s hard to say which causes more anxiety: not having answers or getting bad news. I think it really helps to know you are doing everything you can to find the answers. That’s all any of us can do.