Rising CA125

[Ovarianne]

I wondered if anyone has experienced rising CA125 with no symptoms, I have been feeling fine but find it hard not to get anxious when the marker is rising, although my oncologist is very reassuring. First diagnosed in 2015 - hysterectomy followed by carboplatin and taxol for 6 sessions, returned 2017 in lymph node - op to remove followed by carboplatin and caelyx for 6 sessions, treatment ended last December. CA125 started rising in April, last test was 280. Would appreciate any feedback.

[Lyndy]

Hello I was also diagnosed 2015 and had first line treatment with Avastin which ended 2017. January 2018 my ca125 went up and a scan showed 3 lymph nodes larger than normal. But no symptoms. Fast forward to October this year..another scan, still no symptoms..new oncologist. He told me that a more experienced radiographer had looked at my scan and pronounced my disease stable..come back in 3 months!

So I go back in January...still no symptoms. I am not sure now if what they are seeing is cancer? If it is then it seems to be acting rather strangely but tbh I don’t care as long as I feel ok! Hope this helps x

[Ovarianne in reply to Lyndy]

It's weird isn't it, my oncologist said it sometimes happens but couldn't really explain why. Good to hear of someone else with a similar experience, I suppose the key is not to let the rising numbers bother you, easier said than done though!

[Katmal-UK in reply to Ovarianne]

Hi. Have you had a Scan? My CA125 is very indicative of a recurrence and I don' want to scare you but I have never had a symptom.

[Ovarianne in reply to Katmal-UK]

Hi, I had a scan in May which was fine, got another one booked for next week so may know more in a few weeks.

[Angella51 in reply to Lyndy]

Hi Lynda, first so sorry that you are going through this! Do you know which lymph nodes were enlarged or how big they got? I have about five lymph nodes they are following, two of my biggest concern are hepatic and peri aortic but they aren’t treating me. Thanks!

[rossnbren in reply to Angella51]

Me too Angella51..same place, prob same amount that have doubled in size in last 6 months to 10mm, 7mm & 8mm variously..No real symptoms but maybe bloated?!..CA125 elevated from 11 to 120 in 3months..Seeing Oncologist tomorrow for plan... will let you know what happens... Diag stage 3b in 2016..I’m in Perth Aust.

[Juleswhee]

Hi I recurred in May this year , 9 months after front line chemo ended . I breezed in to consultant appt feeling great , my ca125 was 900 , I am obviously one of those whose ca125 gets high quickly ,there really doesn’t seem to be a correlation between ca125 numbers and how ill you are . Diagnosed 3c in March 2017 , ca125 was 3500 .xxJulia xx

[Ovarianne in reply to Juleswhee]

Recurrence after 9 months is scary, I feel for you. The CA125 business seems confusing and widely varied from person to person.

[Katmal-UK in reply to Ovarianne]

I agree, for some, such as myself its a good indicator, for others not so. Im stage 3 but the highest its eve been s 689. it was 95 on my last recurrence .

[Lindaura]

I am with Kathy,

Like you, I waltzed into my last appointment feeling like the poster girl for successful cancer treatment, only to hear that my CA-125 had risen from 11 to 69.

A week later, it was 123.

I had to wait the requisite 6 weeks for a scan, but by then my CA-125 was 473.

I had no symptoms. Still felt great, but I was determined to insist on treatment even if nothing showed up in the scan.

Sadly, it did show cancer growing back on my peritenium so I am now on Carbo and Caelyx.

I would not risk a “wait and see” because I don’t want this invading any organs or lymph nodes.

This Ovarian Cancer can get really far without us experiencing any symptoms.

Don’t wait. Get that scan now!

Best wishes,

Laura

[Ovarianne in reply to Lindaura]

Thanks, having a scan next Monday, from the feedback I've had it looks as if I have to accept it's on its way back again, for some reason it's harder to accept when you feel absolutely fine.

[Lindaura in reply to Ovarianne]

I know how you feel.

My husband and I were totally stunned.

I had convinced myself that I was NOT ever going to have a recurrence, that my BRCA1 designation would make me extra safe, for at least a year anyway.

That’s why I asked my GP to run the test again 2 weeks later. Just in case it was a glitch.

When it doubled, I felt doomed and then sad - but only for a day!

Afterwards, I went to work on research, posted here, and got my ducks in a row to prepare for treatment (paying bills, househokd repairs, etc) - and moved my bedroom downstairs next to the loo.

I am now my normally optimistic self and the regimen of Carbo/Caelyx is much MUCH easier and I think I am keeping my hair, which is weirdly curly, but all I have!

I wish you the best of luck, the best treatment and so sorry this has happened to you, too.

Hugs,

Laura

[Lily-Anne]

I was told if it doubles on each test have a scan. My recurrence was noted by a rising level but no symptoms. The scan was also clear and they reviewed it again, still clear. CA levels continued to rise and a new scan showed a pelvic growth

Usually my body is ahead of the game but not this time. It took best part of six months from rising CA level to surgery.

Follow your instinct but also push for answers

LA xx

[Ovarianne in reply to Lily-Anne]

Maybe my scan next week will show something.........watch this space.

[Bettyxxx]

Hi there, i had a 10cm bowel recurrence (successfully removed) and my ca125 was 30 so as you can see mine is totally inaccurate x i have got used to going with my bodys symptoms and studys have actually shown that if there is recurrence treating it early on ca125 result or later on symptoms makes no difference to the long term outcomes.

It is different for everyone some people like to get ahead of the game if there is a problem and that is right for them. i tend to compartmentalise things and pack the cancer away until i have to face it 😬 its the way i get on with, and enjoy my life between treatments

All the best

Diane

[Ovarianne in reply to Bettyxxx]

I think I'm like you, the longer I can go between chemo treatments the better. I'm normally very good at pushing the cancer to the back of my mind but the continuing rise of CA125 makes it more difficult.

[greenpink]

Have you had a recent CT scan? That can give a clearer understanding. My Oncologist says she doesn't guess anything from numbers "treat numbers". My CA125 is rising, increasingly. In the last four weeks, it increased by 16. Is now 38 and there's nothing to see on CT scan, which I had done because it was rising. I'm taking Olaparib. I have no symptoms of disease.

[Ovarianne in reply to greenpink]

I had a scan in April, when my CA125 was 90, which was clear. In Sept it rose to 280, I was offered a scan but decided against it as I was feeling better than ever. I now have a scan booked for next Monday which will be followed by blood tests and an oncology appointment. There's obviously something going on in my body, will just have to wait and see what develops, in the meantime I keep smiling. Good luck to you, maybe the olaparib is keeping it at bay.

[Unclear]

I was first diagnosed in October 2016 and had surgery in November. From the start I had no symptoms but even though I was Stage 2C my CA125 was only 93. After surgery it was down to 48 and continued to go down with my chemo and stayed between 10 and 11. Ended chemo in April 2017 and thought I was free and clear. In March of 2018 my CA125 started to go up but was still within normal range. PET scan showed nothing. By June my CA125 was 51.2 and 2 weeks later 100.6. PET scan showed it had metastasized to the peritoneum and my CA125 was up to 205.6. Started Avastin and they sent out what was removed from my 2016 surgery to see what chemo would work best. The Avastin brought my number down to 150 but it then climbed to 234.4 and another PET revealed more progression. All this time I was still feeling great and not understanding what was going on. I was put on the same chemo Carbo and Taxol every week and Avastin every 3 weeks. My CA125 is down to 56.8 and I pray this decline will continue. Next PET is in January unless something happens prior to that. They keep telling me everyone’s journey is different. I’ve seen that for myself. I’ve met so many wonderful Teal Survivors who were diagnosed Stage 4 and never had a recurrence. Good luck with your appointments. Together in Teal!

[Ovarianne in reply to Unclear]

It's hard to get your head around the fact that cancer is eating away at your body yet you feel fine! Hope all goes well for you, what do you mean by Teal, I've not heard that before?

[Unclear in reply to Ovarianne]

Teal is the color for ovarian cancer just like pink is the color for breast cancer. I belong to a group of women who either have or had ovarian cancer and we refer to each other as Teal sisters.

[luluw]

My recurrence was diagnosed in September 2017 and I have been fit and well ever since! My CA125 has risen slowly (it's never been very high) and a scan 3 months ago showed that the two small tumours I have in lymph nodes have only grown by about 50% in that year. I'm still very well and so I haven't been prepared to give up my quality of life to go back to chemo. I'm seeing my oncologist next week for a checkup-I know how he wants me to go back on chemo but I'm still undecided. I'll let you know what happens but what I'm saying is to wait and see what the scan says and don't panic.

Good luck

Lou xxxxxx

[Ovarianne in reply to luluw]

Wow, that's encouraging! I'm trying to stay positive until I get the scan results, hope all goes well for you next week.

[Naimish]

CA125 maybe a number for some and for some it may be a significant number. Per my wife's oncologist , he gets duly concerned if the value rises fast and /or if it is double of normal (35) . For some any rise above the normal becomes significant . So, it's horses for courses really. Nevertheless, it's not to be ignored even if one feels well otherwise.

Naimish