CA125 ALREADY RISING

Hello all, I was given the NED at the end of November, my CTscan was clear with my CA125 at 44. I have been for my 3 month check up and my CA125 has doubled! My CNS nurse said that it was 87 but that the lab has adjusted it to 67? she does not know why and has just said I need a CTscan, so as you can imagine I am worried sick, has this adjustment happened before to you? if yes why was it done? Many thanks for any advise. Lyn xx

[Petrolhead]

Hi Lyn

Worrying time for you.

My hospital changed the CA125 test as they used a different method. At one point I was getting 2 values. One for the old way and one for the new. The new way readings were about 11 whereas the old way about 6.

As I wanted to know more I had a word with my CNS and I spoke directly to the lab. I now just get results for the new way. Luckily fairly consistent at the moment.

Definitely worth asking if they have changed the way they do the test or indeed if they are using a different lab.

Best wishes

Fay

[Hidden in reply to Petrolhead]

Hi Fay thanks for the info, my CNS said she didn't know why it had been adjusted, so am assuming she hasn't seen it before. I don't think I am having a recurrence already as am feeling very well. Will just have to wait for the CT scan and results, all the waiting for tests and results really does my head in! 11 is fabulous, long may it continue for you. Take care Lyn xx

[Coldethyl]

Sorry you’re facing further tests. My ca125 started to rise last April and I’ve had four clear scans since then so I’d just say that you might not get a definitive answer about recurrence from the ct scan so be prepared to live with the worry - it’s not easy but with hindsight feeling I’d explode until I got the results was waste of time as I’ve still not had an answer ! Everything crossed x

[Hidden in reply to Coldethyl]

I think the worry since diagnosis has aged me 10 years, sorry to hear you are having a stressful time also. Lets hope we both get some answers soon. Take Care xx

[Coldethyl in reply to Hidden]

Yes I certainly look my age now ! Uncertainty is the pits at times - I was meant to have been referred for counselling support last November but my paperwork must have been shoved in a drawer as onc surprised I’d not heard as clearly I’m struggling - sadly not clearly enough for him not to start on about how oc always recurs! X

[Lindaura]

Dear Lyn,

I am so sorry to hear you are re-entering this worrying time.

I am glad that you are getting that CT scan soon.

I had nearly 6 months clear, but when my CA-125 started doubling, I knew I was in trouble, even though I felt great at the time.

I was ready to beg for treatment even if my CT scan hadn’t revealed the recurrence, because I was not prepared to wait for symptoms or for the cancer to invade any organs or lymph nodes.

So I have been on Carbo and Caelyx for the past 4 months.

I still have a lovely head of curly blonde hair and have done pretty well on this regime, not to forget that the cancer has all but disappeared and my CA-125 is down to 17.

If you are successful in your next treatment, you will also be eligible for the PARP Inhibitor, Niraparib.

So things are disappointing, but we still have options and my life is a lot better than when I was first diagnosed.

Hugs,

Laura

[Hidden]

Hi Laura - thank you. I agree with all that you have said but can't help worrying that a monumental cock up has been made regarding my test. I had the BRCA test done on the 14th jan which was negative, they did a CA125 at the same time it was 44 so it has doubled in just over 6 weeks. I was going to have another CA125 done at my docs but I spoke to McMillan earlier today who advised against it as they felt that I run the risk of adding another layer of anxiety. I will just have to brave it out until the CTscan and hope that nothing shows up. xx

[Lindaura in reply to Hidden]

As you probably have guessed, I am a take charge kind of gal.

I had to wait 6 weeks from my first CA-125 rise to 69, but I immediately asked fir another test the following week, 110, which confirmed the recurrence in my mind, and then had another 2 weeks later, so over 200 by then, until it was 473 when I started Chemo.

I need to know as much as possible about everything and this whole experience has been a gigantic learning curve.

I never even heard if BRCA until i was practically through first line! And then I turned out to be BRCA1 positive!

But, I hope for your sake this is just a glitch.

If your scan is still several weeks away, I would ask your GP for the blood test. It kind of stops the worries if you know it’s real, and you can plan your life and prepare your options if you are pretty certain you are having a recurrence.

I think I fixed a bunch of problems and cleared my desk during those 6 weeks.

Hugs,

Laura

[Manchesterlady]

Hi Lyn , sorry to hear that you have to suffer all the anxiety again , it’s torture isn’t it . I do think that blood tests vary , mine have been different from my gp than from the Christie. It’s a b...r of a disease, everyone is so different. Wishing you luck with your scan , can never understand why it takes so long to get the results. Thinking of you

Love Sheila xx

[Hidden in reply to Manchesterlady]

Thank you Sheila - only you ladies on here really understand the agony of this horrid disease and how it messes with your mind, not sure I am ready to start treatment all over again, but I know when it comes to it I will dig deep and find the strength.....somewhere! just hoping my CTscan is still clear and I can wait until my original plan of going back to see oncologist in June, I haven't got time to be ill as we have booked a cruise for May and two other little trips, but what will be will be. Take care xx

[Juleswhee]

Lyn , Please try not to panic, easier said than done I know .Hope you get your scan soon xxx.Julia

[Hidden in reply to Juleswhee]

Thank you Julia, like you say easier said than done, but I am trying hard to stay positive. They said the appointment will be sent through the post....waiting waiting waiting, Arrrrggghhh.

[Small_bump]

I'm so sorry you're having to go through all this worry so soon after the NED news. Hopefully it is just one of them things and your CT ends up being clear. Sending lots of love and positive vibes for you,

Emma xx

[Hidden in reply to Small_bump]

Thank you Emma, I have Arthritis, so I am hoping it is that causing my CA125 to rise, but I might be grasping at straws lol Take Care xx

[Numi]

Sorry to hear you're worried, but it's not the end of the world even if you have recurred - though It feels like it at the time. Worse than intial diagnosis if anything. And of course it could just be a blip. My CA125 went down to 50 with chemo in 2016 but at my first 3 month check up two years ago this week, it had risen to 200. I didn't have anything I recognised as symptoms, but a CT scan showed a small tumour - only just measurable. My oncologist put me straight back onto chemo - carbo/caelyx - rather than wait and see, as I'd been sick a couple of times for no apparent reason. I thought it was just a bug, so hadn't worried. Chemo brought CA125 back down to 50 and shrunk the tumour to being barely visible on CT. I then went on to Niraparib which I've been on ever since. My CA125 last week was 20 and it's hovered around that for months. I went to my daughter's wedding in 2017 while on chemo, and now her 11-week old son is beside me in his bouncer and my own son is the proud father of a 2-week old. I'm well and active and so happy to be here. The worry of another recurrence never really goes away but I put it to the back of my mind as much as possible and enjoy life to the full. Hope all works out well for you and you aren't having a recurrence, but if you are, there is treatment and so much support available to help you through. X

[Lindaura in reply to Numi]

Hi Numi,

That was a great answer and a heart warming story.

Please post your history for all of us to see and learn from.

I am just finishing Carbo:Caelyx for first recurrence and will also go onto Niraparib next.

Your story is very encouraging for all of us.

Best wishes,

Laura

[Hidden in reply to Numi]

Thank you Numi - you certainly have calmed me. Your right it could be a blip, I have asked to be retested so that my Oncologist has a good reading when I see her again, not what appears to be a guesstimate. I am glad to hear that your treatment plan is working well for you. Congratulations on becoming a grandmother! Twice!! Lucky you. xx

[tara108]

Hi Lyn. Yes, it is so incredibly stressful. I am 4 months past my 2nd chemo and CA125 starting to rise again. If you want your bloods done sooner, ask your GP for referral. At some point I was having my bloods done every week! Now I have them done monthly. I always want to know what is happening. LOL even though it's not good sometimes.

It's true that if they change labs etc, the result can differ. But for me, I don't really get symptoms but my CA125 has always been accurate. So when it starts to rise more than twice or doubles, I know I've got troubles

! Seeing my oncologist tomorrow to discuss options, though I am hoping I may be able to wait 2/3 months to let my immune system recover more! We have to pay in Australia for parp inhibitor ($60 -80 thousand a year!) until after 3rd recurrence. If it was free, I would be taking it. On average, It can give non BRCA women about 5 months more remission.

Anyhow sending big hugs from Australia and thinking of you.

[Hidden]

Thank you, good luck at your oncologist appointment tomorrow, I am sure they will have a plan that suits you. xx

[Coutance]

Hi Lyn,

I was so sorry to read your news and really feel for you. As others have said, your CA125 can rise for lots of reasons and hopefully it will turn out to be nothing in your case.

I also faced a rising CA125 at my first 3 month review and I was absolutely floored, in many ways it was worse than my original diagnosis. I was so anxious I could barely function and I just woke up in a big black hole every day. I knew I had to do something to get myself in a better place so I started by going to the Maggie's Centre at the hospital I go to (Edinburgh). If you have a local Maggie's it might be worth going in for a chat. I went every week for several weeks and it helped enormously. They also very gently suggested that I might benefit from an anti depressant and I followed this advice (Citalopram 10mg). With everything I did I really picked up, started to value each day, look forward to each day and have been much more able to cope with setbacks and anxiety. I ended up on letrozole from June 2018 until December 2018 and am now doing well on weekly taxol/avastin and have had great success with the cold cap! This is a highly personal decision but I just couldn't have gone back to chemo having only just finished it so I was glad to have a break by having letrozole. I am thinking about you and looking forward to hearing good news xxx

[Hidden in reply to Coutance]

Thank you, it really felt like the rug had been pulled out from under me. I just wasn't prepared for a rising CA125 so soon. Glad to hear you are doing well on your treatment, long may it continue. xx

[Maus123]

Hi Lyn. Maybe you could have the ca125 done again at the same lab, same method, to get clarity? And then maybe speak with your oncogist/consultant about it? A rise is worrying enough without having a significant deviation to in the mix too. Best of luck! xx. Maus

[Hidden in reply to Maus123]

Hi Maus - I have today emailed my CNS and asked her to clarify the adjustment and why it was necessary, I said I didn't have confidence in the result and have requested another test. Take Care - Lyn xx