CA125 rise but clear PET/CT scan: Hi everyone, I... - My Ovacome

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CA125 rise but clear PET/CT scan

Stuee01 profile image

Hi everyone,

I have been going through this OC journey with my partner for the past year. She was diagnosed with OC 3C in August 2020 and has been on Avastin for almost a year now after chemo. We have stopped Avastin just recently. For the last 3 CA125 checks, her levels has risen steadily from 6, 17, 28 and now 45. We had a PET/CT scan done and even at CA 125 of 45 nothing significant shows...no mass/tumors or lymph node enlargement. I think our oncologist thought for sure something would show up. She still feels it will eventually recur and we should be prepared for 2nd line due to the CA125 rise.

I'm just wondering if anyone else has had the experience where you have had a rise in CA125 with clear PET scan and have remained in remission for a while? I'm a bit more comforted that the PET scan shows no activity as I know it is more sensitive than a CT scan.

Thanks!

Steph

20 Replies

Same thing is happening with my mum. Since July 2020 it has gone 15,18,17,16,18,19,27,36,54,57. All ct scans have been clear and my mum remains relatively well with some fatigue. The onc thinks it’s there but something is holding it back.

Stuee01 profile image
Stuee01 in reply to N-A-58

Seems your mom's numbers are increasing quite slowly, which is a good sign. Though definitely understand the concern. Her immune system is likely fighting it back. You can also consider trying to push for a PET scan as it is more sensitive and can detect growths that do not appear on CT scans.

Hi StephI had a ca125 of 250 and although something v small was spotted on a previous scan, I remained well and stable for 2.5 years…. to the point where everyone was wondering what was going on. Then it suddenly came back, symptomatic and active.

I think that they can have real trouble identifying recurrence. Sometimes things are spotted on scans that are dormant and sometimes you can have active disease that is microscopic and doesn’t show up.

That’s probably not v helpful but I was told that they generally wait for symptoms before treatment starts, so it’s a question of living one day at a time if you and your partner are able to xx

Stuee01 profile image
Stuee01 in reply to Lyndy

Hey Lyndy! Thanks for your reply :) It does provide some comfort to know someone else has been on the same boat. We would be over the moon to have 2.5 years of no treatment. Am crossing all fingers and toes for this.

Sorry to hear though that you recurred, but your 4 years remission is amazing. Am glad you were able to have that time. Agree scans can be hazy. I felt that even in speaking with our oncologist today…she doesn’t seem sure on what is happening either…so in a way that is good. If it was clear there was a recurrence then she would be able to see it on the scan. To me that is at least some good news…

We do try to live in the moment…can’t think too far ahead and definitely will fight on if needed.

Xo

Steph

Stuee01 profile image
Stuee01 in reply to Lyndy

Hi Lyndy,

I forgot to ask you, when your CA 125 was at 250 for those 2.5 years, did they give you any scans during that time? If no scans, were you just monitored by reporting any symptoms that you experienced?

Thanks!

Stephanie

Lyndy profile image
Lyndy in reply to Stuee01

They monitored every 3 months and I think I had 2 scans which didn’t show much change x

Hi Steph, just wanted to send best wishes to you both. I’m also on the OC journey with my wife who was diagnosed 4 years ago. We’ve been through many ups and downs but not this scenario. All the best.

Suzanne

Stuee01 profile image
Stuee01 in reply to Worsuz

hey Suzanne,

Thanks for your wishes. :) Yah, it's quite the rollercoaster of a journey. I feel like I have PTSD now with all the treatments, emergencies etc...but in many ways it has brought us closer together and stronger as well. Wish you and your wife the best too! Stay healthy and strong!

-Steph

I this just happened to me… ca125 went from 3,11,35,105. CT scab clear but when I was at 105 the pet scan showed only a 2.3 cm mark in my pelvic area. I had surgery right away to remove.

I would say, maybe PET in another month or two…. From my experience. I wouldn’t wait too long. Sending positive vibes

Stuee01 profile image
Stuee01 in reply to Ange09062016

Hi Ange,

Yah, we had a PET scan actually when her CA125 was at 45 and nothing significant showed up at all. The oncologist was surprised as well and thinks that my partner's CA125 probably needs to be higher in order for something to show. Yah, just waiting now, but since a PET scan picks up much smaller disease we are quite relieved that it doesn't show anything at the moment.

Thanks for the input!

Steph

Everything is subjective

First you need to know what kind of mutation you have BRCCA, HER2 etc

Then you need to know that MOST. Not all OC. And Uterine advanced cancer have anywhere from 70 to 80 percent recurrence rate

It’s a journey

PET a no better then CT and MSK oncologist doesn’t believe in PET if you are checking regularly which in your case you should be

CA125 can rise for many reasons and often doctors dismiss it

Including at MSK and go only by scans

But I personally like to monitor closely my CA125 and often ask for a check as for me I think it is an indicator of something brewing

I have Stage4 endometrial

I am in my 50s and still work full time

I had first line treatment chemo and all the surgeries

I recurred 5 months later and am now on TRIAL ENHERTU

I am good since May 2021

But I know eventually it will come back

That is what my type of mutation does

Ask about yours(partners)

The objective is to keep fighting it

Stay positive

Until one day they finally find a cure

Stuee01 profile image
Stuee01 in reply to Supermary

hey supermary! Thanks for the insight. I'm surprised that you say PET is no different than a CT scan as PET scans are known to pick up much smaller cancer activity. Agree that CA125 number can reflect other activity as well, but our oncologist is pretty 'realistic' in that she said since my partner has had all her lady bits removed, there really isn't anything that would raise the CA125 aside from a recurrence :( Yah, she isn't really the positive thinking type of doctor, but it's fine since we'll just prepare for the worst and hope for the best!

As for BRCA, my partner tested negative for that but only her blood. They did not test her tumor at the time. She did do a full panel for other mutations and was negative, which I know doesn't bear well when it comes to trials or different parps.

Thanks for the encouragement! We'll all continue to stay positive....until they find a cure.

xoxo,

S

Supermary profile image
Supermary in reply to Stuee01

All of my genetic blood tests came back negative

Where they found the mutation was in the research tests of the tumors removed during my debulking surgery

That is a different test

If your partner hasn’t had that you should ask

Regarding the PET vs CT scan

PET scans are much higher in radiation and you wouldn’t get one every three weeks

If you are in remission NED then a PET SCAN is usually used as you don’t get one every six weeks

If you are on a trial like me most likely you will get CT SCANS

My opinion it doesn’t hurt to talk it over with your oncologist

That’s what I do

😃

Cher96 profile image
Cher96 in reply to Supermary

Hi MaryI'm getting ct scan every three months now that I'm on maintenance, but not sure what the purpose of it all is since the ct scan can't really pick up everything. When I had my pre surgery cat scan, it didn't really show what was inside until the surgeon picked up cancer

on my intestines at time of surgery. I had 4 rounds of chemo, surgery, and then 3 more rounds of chemo, and now avastin. I had another cat scan after surgery and chemo and it was the same as my pre surgical cat scan!! So what was the point of all that surgery, chemo etc and ct scans. I'm so confused...

Supermary profile image
Supermary in reply to Cher96

I too had cancer on my intestine Picked up neither on my PET OR CT last year but during surgery

I don’t know exactly what the benefit is or isn’t as I am certain that no matter what type of scan or what fantastic surgeon you have things can be missed

I go for the CT SCANs every 6 weeks as there really isn’t anything else

Cancer is on the cellular level and we as a world in my opinion are so far behind in the research and cure of below the belt cancers

I pray and fight to stay here enough years to see some improvements in that regard

Many improvements have been made in BC due to the advertising and billions of dollars of funding

We all need to help advocates of improving detection and treatment and a cure of these below the belt cancers which inflict just as many women in total and often at advanced stages

My two pennies

Cher96 profile image
Cher96 in reply to Supermary

Love your supportive two pennies. I totally agree with you. Have a great holiday

Same here — but my oncologist said it can take a few months for anything g to show on a scan . I have been well monitored and I’m sure they will do the same for you . Your Ca125 is still very low so keep positive x

Stuee01 profile image
Stuee01 in reply to Lookingahead

Yah, definitely monitoring closely and yes, our oncologist has said it may take a few months for something to show up. They can't do anything right now as they cannot see anything on the scan, so no point in treating just the CA125 number. She is a bit surprised though as PET scans are pretty sensitive and thought for sure something would be picked up on the scan.

Keeping positive but also ready for whatever comes our way!

Cher96 profile image
Cher96 in reply to Lookingahead

Hi The interesting (or maybe not so interesting but incomprehensible) thing is, that I had a scan in June before my surgery but after 4 rounds of carbo/taxol, then another scan in October after surgery(july) and then 3 more rounds of Carbo/taxol, and there was no change. Being monitored every 3 months. argh!

I guess that’s all we can do.

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