Anyone else’s CA125 an ineffective tumor marker?

[SuzanneKau]

Doc says mine is not a good one. PPC LG 3C diag. 1/17. Highest ever CA125 was 43. Last check 9. How are you followed?

[Alifit]

Your post should remind us all that CA125 is not the most reliable marker. Mine was in the 200s when I was told I only had IBS. it went up to the 400s before there was any disease visible on imaging. I too have PPC, 3c but high grade.

It sounds that you have been diagnosed despite your marker reading - I’m sure they have other ways of monitoring your disease.

Stay well, Ali x

[SuzanneKau in reply to Alifit]

Thanks Ali. Yes, I was diagnosed due to pain and CT scan. I had total hysterectomy in 1990 but managed to get PPC 27 years later. Who knew!

[Petrolhead]

Hi

Mine was 31 when diagnosed. However, it is not usually a good marker for mucinous OC. Although I still have CA125 measured I also have CA19-9 and CEA as these are more suited to my type of OC

Fay

[Sunfleury-UK in reply to Petrolhead]

Another with Mucinous here (1C) ... mine was never above 35 when diagnosed, think the highest it went to 30 but I was pre-menopausal and also had endometriosis. Like Fay above, mine is still taken at follow-up along with CA19-9. SX

[Petrolhead in reply to Sunfleury-UK]

Do you not have a CEA test. For mucinous there is an 88% chance it is raised. Not a bad indicator. (Nothing guaranteed though.

Regards Fay

[Sunfleury-UK in reply to Petrolhead]

I've definitely had it in the past but dont think its part of routine follow-up now. I do know we've talked about it though.... ( Im now 5yrs+)

[Petrolhead in reply to Sunfleury-UK]

Ah- everything tends to stop after 5 years. I am now 18 months so still paranoid. lol 😂

[Sunfleury-UK in reply to Petrolhead]

Protocol at Christie's is to be kept on 6 monthly checks though up to 10 yrs! x

[Petrolhead in reply to Sunfleury-UK]

Very interesting- I shall remember that should the time come. Very positive formed to hear that you are doing well. Long may it continue.

Regards Fay

[Petrolhead]

I also meant to say that there was a long thread on the American forum on Inspire where people posted their CA125 reading when diagnosed. Loads of ladies posted there.

Fay

[SuzanneKau in reply to Petrolhead]

Thank you. I’ll look into that site.

[bsooner]

Mine was only a 15 when diagnosed after surgery. Two years later I am at 6. After chemo I am checked by physical exam and CA125 . I have had 3 CT’s in the past almost two years and have had check ups every three months. After two years pass I will then go to every six months for the next three years. I am in the US.

[Katmal-UK]

Hi Suzanne Mine has never been particularly high but for me its always been a reliable indicator as despite stage 3 OC with two recurrences Ive never had any symptoms. xx

[Katsmum]

Mine is no longer checked regularly as it was 500 + at diagnosis and fell to 15 after first line chemo and has remained low despite still having liver and lung metastasis. I too have PPC but stage IV high grade and have had second line chemo, currently having 3 months off for good behaviour! So definitely not a good indicator for me probably due to where the tumours are as abdominal area seems relatively clear for now

Hope you have a great day

Jane xx

[Sherrym]

I never had symptoms but was stage 3C June 2015. Ca125 worked for me.

I am checked every 4 months. No ct scans, but just had a mammogram as I am BRCA1

[riverside]

The other way round for me Suzanne - the CA125 was 8800 when I was first diagnosed over 6 years ago (PPC) and at the beginning of the last chemo I had, which finished in June '17, it was over 10,000. It halved after every treatment and I usually end up around the 40 mark. After having 6 months on Niraparib I am down to 30. I think some people are just more sensitive to it which is why they always tell you not to rely on it as a diagnosis. My onc explained that it is the load of lots of tiny tumours not necessarily large ones. I also remember reading a paper from the John Hopkins Institute that a surgeon had described the inside of a patient's abdomen as having had handfuls of granulated sugar thrown into it and each grain was a teeny tumour. I don't why but I found that reassuring.

All the best, Marie

[Mumtazbegum]

The highest ca125 reading was 100 when diagnosed with endometriosis. The rest of the time it was in the 40 s.So it delayed my diagnosis.Unexplained post menopausal bleeding resulted in my hysterectomy.My diagnosis of 1c mixed high grade serous oc was only made after my surgery.I am having a 3 month check up and a ct scan in April. Not sure what will happen after that.

[Di16]

I have GCT, & I have been told that ca125 is rarely raised in this type of oc. Although I have a recurrence, my last ca125 result was 6. Di

[Rachael47]

I was sure I had OC because I had some of the symptoms, and my Mother died of it in 1980. However, my doctors relied on CA125, assuring me I was fine, until they did a hysterectomy and discovered quite a lot of cancer spreading from the Fallopian tubes.

[koffeekat99]

No idea if my CA125 is reliable as I don’t monitor it!!!

But I have low grade OC and am not having any treatment currently. I’d probably monitor it if there was a reason, i.e. having treatment or if I had been NED. But I know the tumours are there and I know what symptoms to watch out for. Also I know I can have a CT scan whenever I want.

So in answer to your question, I monitor by how I feel, have an internal exam by doc at my follow up appts and we agree whether to do a CT or not.

I’m pretty sure if I wanted to monitor my CA125 we could do it though. So its up to you how you want to monitor it.

[Lynn_B]

I too have ppc.Im on watch and wait after 2nd reocurence.My surgeon/oncologist wants me to not have any scan or ca125.She wants me to go by symtoms.Im good with this because at my original diagnosis and two reocurences,I had symtoms which is severe bloating.The longer you go without chemo the better it works.Plus im going on vacation and I not covered for insurance for 90 days.So if i did the test and my ca125 goes up,they may say im not fit to travel because it looks like my cancer may be back,so by me waiting for symtoms I can live a quality of life ....for a bit longer.My original CA125 was 1200.Right now its at 19..Each reocurence, got me to at least a year..Hopeing for a bit longer this time.In the mean time.Looking forward to my travels.👍💙💙💙💙

[SuzanneKau]

Thank you everyone for your comments. Next check-up is this month. Local Doc was going to discontinue blood work because he doesn’t feel it’s necessary since it’s not a good indicator for me. However my doc at MD Anderson says it is, relatively speaking. Based on your comments, I’ve decided to have it done as well as a CT scan since I’m ready to book a big vacation for this summer. After this check-up, I think I’ll back off from testing fo a while. We’ll see...... hugs to you all

[Ge0rg1na]

Hi, On diagnosis in 2010 my CA125 was 8 and it didn't move much for the first 4 years despite multiple recurrence. Then, all of a sudden it went up to three figures when there was substantial disease. A bit of a shock both times. I'm HG Fallopian Tube cancer. I think the trick is not to become too focused on the marker - look at the bloods / scans instead.

Good luck

[Neona]

My ca 125 is not used as it was only 67 at diagnosis for clear cell stage 3c. I just get a ct scan.