CA-125 Results Went Up: Should I be concerned?

Posted by stparker54 @stparker54, Aug 26, 2020

The results of my CA-125 tumor marker test increased from 16.8 to 20.3. This is the fourth time I've had a tumor marker test and it's the first time there was an increase in the results. How concerned should I be?

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Profile picture for jo72 @jo72

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. 🙏🏽

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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.

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Profile picture for christyhh @christyhh

My mother was diagnosed with stage 4 Ovarian cancer at the age of 75. Her CA 125 levels was 577 and she had tumors and enlarged lymph nodes all over her thoracic area. After 6 round of Chemo the growth of the tumors stop and started shrinking and her CA 125 level went to 13.9. Over the past 6 months the CA125 levels started rising again. A CT was done and no change in tumor size or lymph nodes. They are now up to 455. I asked her oncologist if they should do a CT of the neck and brain but he said it is very rare that ovarian cancer rarely goes to the brain, but he has offered not any explanation as to why her levels keep rising. I would appreciate any information concerning this matter.

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I know it's been a year, but I just joined here and saw your post. I know it's a year later, but I did want to comment on one thing you mentioned. The oncologist said it was very rare that ovarian cancer to to the brain. That may be true, but it can happen, especially if your mother had enlarged lymph nodes. My brother had Stage IV bladder cancer and enlarged lymph nodes. Did chemo for little over a year. The last three CT scans he had were "clean". Then he started having balance issues and falling. Took him to ER when things got really bad. They did MRI and found tumor mass at base of brain and it was inoperable. He passed two months later. His oncologist told us, after it was found, that it was rare to spread to brain. Because of my concern, I advised my oncologist (I have Stage III-C OC) and she scheduled an MRI of neck and brain. Mine came out okay, but I still plan on asking for another one at some point, just in case. Because it's rare, they just don't regularly schedule scans of the brain - just the area where your cancer started. It seems once it's in the lymph nodes, it can go anywhere at anytime.

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Profile picture for jaynus55 @jaynus55

I know it's been a year, but I just joined here and saw your post. I know it's a year later, but I did want to comment on one thing you mentioned. The oncologist said it was very rare that ovarian cancer to to the brain. That may be true, but it can happen, especially if your mother had enlarged lymph nodes. My brother had Stage IV bladder cancer and enlarged lymph nodes. Did chemo for little over a year. The last three CT scans he had were "clean". Then he started having balance issues and falling. Took him to ER when things got really bad. They did MRI and found tumor mass at base of brain and it was inoperable. He passed two months later. His oncologist told us, after it was found, that it was rare to spread to brain. Because of my concern, I advised my oncologist (I have Stage III-C OC) and she scheduled an MRI of neck and brain. Mine came out okay, but I still plan on asking for another one at some point, just in case. Because it's rare, they just don't regularly schedule scans of the brain - just the area where your cancer started. It seems once it's in the lymph nodes, it can go anywhere at anytime.

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Just wanted to add that this was the situation that a dear friend of mine faced as well. She had OC then a while later brain cancer. The docs said the two were unrelated. Were the two unrelated? No one can be entirely sure.

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Profile picture for jaynus55 @jaynus55

I was diagnosed with Stage III-C ovarian cancer in February 2022. I had complete hysterectomy, appendix removal, and partial stomach lining (omentum) removal in May 2022. Still in chemo (on my third combination of drugs - Avastin, Keytruda, and Cytoxan). This has been working well for me overall. I feel fine, and my PET scans show no activity or new implants. But, my CA-125 has been steadily rising since last October 2023. At that time I was diagnosed with three melanomas on my left leg. In December 2023, I was diagnosed with two melanomas and one borderline melanoma on upper body. Last month, I was diagnosed with two melanomas, one on back and one on arm. My CA-125 was in normal range until the melanomas started popping up. It has steadily increased since October and is now at 295 as of this week. My most recent PET scan, last week, indicated no activity or implants visible. My oncologist is monitoring the CA-125, but says they rely on imaging more than the blood test. It still worries me that CA-125 keeps rising. There doesn't seem to be any connection between melanomas and increasing CA-125. Does anyone have any thoughts on this? As I indicated, I feel fine, no pain, do normal activities; just some fatigue. Thanks for any input.

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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. 🙏🏽

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Profile picture for ldubevna @ldubevna

My mom is 2 years and 3 months post total hysterectomy for endometrial cancer. This past winter she had a perforated bowel which required her to have a temporary colostomy. She is scheduled to have reversal surgery next month. Her oncologist had sent her for regular follow up blood work and a CT scan but that was delayed because she came down with COVID. She did have the blood work done in April and her tumor marker was 30. She had repeat blood work done on Monday and the result is now 61. It this an indication that the cancer is back or can this just be because of inflammation due to her colostomy surgery?

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I was in a car accident caused by a medical emergency and my CA125 rose during that period. I wasn’t badly injured, just a little bruised up. My oncologist said the rise was probably due to the accident and it went back down pretty quickly. So it seems like other factors than cancer can affect the CA125 measure.

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Profile picture for jaynus55 @jaynus55

I was diagnosed with Stage III-C ovarian cancer in February 2022. I had complete hysterectomy, appendix removal, and partial stomach lining (omentum) removal in May 2022. Still in chemo (on my third combination of drugs - Avastin, Keytruda, and Cytoxan). This has been working well for me overall. I feel fine, and my PET scans show no activity or new implants. But, my CA-125 has been steadily rising since last October 2023. At that time I was diagnosed with three melanomas on my left leg. In December 2023, I was diagnosed with two melanomas and one borderline melanoma on upper body. Last month, I was diagnosed with two melanomas, one on back and one on arm. My CA-125 was in normal range until the melanomas started popping up. It has steadily increased since October and is now at 295 as of this week. My most recent PET scan, last week, indicated no activity or implants visible. My oncologist is monitoring the CA-125, but says they rely on imaging more than the blood test. It still worries me that CA-125 keeps rising. There doesn't seem to be any connection between melanomas and increasing CA-125. Does anyone have any thoughts on this? As I indicated, I feel fine, no pain, do normal activities; just some fatigue. Thanks for any input.

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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.

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Profile picture for jaynus55 @jaynus55

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.

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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.

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Diagnosed with OC in Feb 2022. I had chemo, surgery, more chemo and have continued on chemo since diagnosis. Meds have changed three times. My CA-125 has steadily risen since Oct 2023, when melanomas started popping out on me. Was on Avastin, Keytruda, & Cytoxan (started this cocktail in April 23). Had to stop Avastin for 8 wks due to melanoma surgeries in Nov 23 & Jan 24. Finally got back on full treatment in Feb 24. More melanomas. Avastin stopped again, as well as Cytoxan in July, for melanoma surgery. PET scans had been coming back with no activity up until end of May 24. Had PET scan first of Aug and there was "activity". Oncologist said drugs weren't working and we needed to change treatment. Choices were Taxol and Avastin, or Gemzar and Cisplatin. I opted to go with Gemzar/Cisplatin as I was told they would not have to stop the drugs if by chance any more melanoma surgeries came into play. By this this time I had gone five weeks with no treatment at all. I have had two cycles of treatments. Was due for third one today, but blood work was bad - low red and white blood cells, platelets, and hemoglobin. Cipro prescribed to ward off infections. Due to go in next week and hopefully will be able to get treatment. My CA-125 came back at 2,847, which is only 125 points from where it was when diagnosed. We did explore clinical trial options at UVA, but opted at this time to go with the Gemzar/Cisplatin. I am devastated by the CA-125 reading and don't know what to do. Hopefully I have provided enough details about this cancer journey, without writing a book about it. Any suggestions? Thank you.

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Profile picture for jaynus55 @jaynus55

Diagnosed with OC in Feb 2022. I had chemo, surgery, more chemo and have continued on chemo since diagnosis. Meds have changed three times. My CA-125 has steadily risen since Oct 2023, when melanomas started popping out on me. Was on Avastin, Keytruda, & Cytoxan (started this cocktail in April 23). Had to stop Avastin for 8 wks due to melanoma surgeries in Nov 23 & Jan 24. Finally got back on full treatment in Feb 24. More melanomas. Avastin stopped again, as well as Cytoxan in July, for melanoma surgery. PET scans had been coming back with no activity up until end of May 24. Had PET scan first of Aug and there was "activity". Oncologist said drugs weren't working and we needed to change treatment. Choices were Taxol and Avastin, or Gemzar and Cisplatin. I opted to go with Gemzar/Cisplatin as I was told they would not have to stop the drugs if by chance any more melanoma surgeries came into play. By this this time I had gone five weeks with no treatment at all. I have had two cycles of treatments. Was due for third one today, but blood work was bad - low red and white blood cells, platelets, and hemoglobin. Cipro prescribed to ward off infections. Due to go in next week and hopefully will be able to get treatment. My CA-125 came back at 2,847, which is only 125 points from where it was when diagnosed. We did explore clinical trial options at UVA, but opted at this time to go with the Gemzar/Cisplatin. I am devastated by the CA-125 reading and don't know what to do. Hopefully I have provided enough details about this cancer journey, without writing a book about it. Any suggestions? Thank you.

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Dear @jaynus55
I am sorry for the difficulties you have experienced in your treatment process so far. It sounds as though you have been given a number of different types of treatment without much success.
This is what I would do—contact MD Anderson in Houston for a review of your tumour pathology and overview of the treatments given and their results. Docs at MD Anderson will work with your team to adjust your treatment or offer you alternatives that may not be available elsewhere. The good news is that they work quickly and with minimal delay.
You have my best wishes.

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Profile picture for jaynus55 @jaynus55

Diagnosed with OC in Feb 2022. I had chemo, surgery, more chemo and have continued on chemo since diagnosis. Meds have changed three times. My CA-125 has steadily risen since Oct 2023, when melanomas started popping out on me. Was on Avastin, Keytruda, & Cytoxan (started this cocktail in April 23). Had to stop Avastin for 8 wks due to melanoma surgeries in Nov 23 & Jan 24. Finally got back on full treatment in Feb 24. More melanomas. Avastin stopped again, as well as Cytoxan in July, for melanoma surgery. PET scans had been coming back with no activity up until end of May 24. Had PET scan first of Aug and there was "activity". Oncologist said drugs weren't working and we needed to change treatment. Choices were Taxol and Avastin, or Gemzar and Cisplatin. I opted to go with Gemzar/Cisplatin as I was told they would not have to stop the drugs if by chance any more melanoma surgeries came into play. By this this time I had gone five weeks with no treatment at all. I have had two cycles of treatments. Was due for third one today, but blood work was bad - low red and white blood cells, platelets, and hemoglobin. Cipro prescribed to ward off infections. Due to go in next week and hopefully will be able to get treatment. My CA-125 came back at 2,847, which is only 125 points from where it was when diagnosed. We did explore clinical trial options at UVA, but opted at this time to go with the Gemzar/Cisplatin. I am devastated by the CA-125 reading and don't know what to do. Hopefully I have provided enough details about this cancer journey, without writing a book about it. Any suggestions? Thank you.

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I’m so sorry you’re going through this. I agree with getting another opinion. Besides Mayo Clinic, consider M D Anderson, Cleveland Clinic, Memorial Sloan-Kettering, Dana-Farber, Johns Hopkins, and Stanford. Thankfully, they can probably “see” you online, saving you travel expenses.
Another source of information is the National Comprehensive Cancer Network guidelines: https://www.nccn.org/guidelines/guidelines-detail
Hugs

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