CA125 Post operation have increased and treatment options

[Lamets]

Hi all

My wife was diagnosed with Stage 3 ovarian cancer back in September 2020.

Due to the extent of the tumours an operation pre chemo wasn’t an option and she went through 3 cycles (weekly taxol for 9 weeks and carbo platin every 3rd week) before debulking surgery back in mid-Jan followed by the same 3 cycles.

CA125 levels were 2500 at diagnosis and have continued to drop during treatment to 40 pre op.

PET scan showed clear three weeks after op but follow up blood test this week has shown the CA125 levels to have increased to 52.

We were both a bit shocked with this as we had hoped the debulking and Chemo post operation would have lowered CA125 to at least normal levels (less than 30).

Has anyone had a similar experience with the count increasing post op??

Also during the Oncologist visit this week she mentioned that If relapse occurs then surgery won’t be an option.

She also mentioned that until relapse occurs/can be confirmed there are no inhibitor treatments available to us in Australia as my wife is BRCA negative and there is no evidence of inhibitors working before relapse in non BRCA patients.

Are there other non BRCA patients who have had inhibitors post op with no medical reason (ie no relapse and CA125 at around 50)??

Just wondering what options others have taken if they have had a similar prognosis.

It’s a roller coaster of highs and lows and following the high of completing 18 chemo sessions and surgery and going into remission this has knocked us straight back to the uncertain future of the original diagnosis.

It seems you are at the mercy of the oncologist and their ‘standard’ treatment regimes. We feel that rather than wait another 6 weeks for a CA125 result and PET scan which is the ‘standard’ treatment we should be doing something now rather than waiting for a positive tumour being diagnosed through the PET scan.

We’re thinking second opinion, clinical trials etc etc

First post so a long one but any input/opinion most welcome.

Summary:

Has anyone had a similar experience with the CA125 count increasing post op??

Any inhibitors used for non BRCA and relapse diagnosis??

Is it another case of waiting and doing nothing until a relapse can be confirmed by a positive PET scan result??!

Thanks for reading,

Steve

[Cropcrop]

Hi Steve,

What an awful rollercoaster ride you’ve found yourselves on, but we’re all passengers on it with you and the ups can be followed by downs but there are hopefully lots more ups to come and we’ll all be here to help you along the tracks.

The CA125 reading can be affected by factors other than just the cancer, inflammation and infection can cause it to increase. It is likely that the surgery has increased the number as there will probably be some inflammation caused by the surgery. Give it a little time and the number will most likely come back down. I’m sure the oncologist would have expressed concern if there was reason for any and could have saved you the worry you currently have if they’d explained this to you. Here in the U.K. We work on 35 as the base number but some people never get below this and remain well and cancer free, it’s a percentile number they work from just as they do, for example, with average weight to height ratios , a child’s development status etc etc but it’s just a baseline and not something to get too hung up on as we’re all different and individual. If the number increases further then it will be investigated accordingly but given that the scan is good I certainly wouldn’t be too worried.

Well done to your wife and you for having gotten this far and there’s further to go. You’ve taken huge steps to tackle this disease which is fantastic, long may you both continue to be as well as you both possibly can be. Take care and stay safe. Love and hugs from a long way away ❤️xx Jane

[Lamets in reply to Cropcrop]

Thanks Jane

It’s hard to get your head around how CA125 count can drop from over 2000 to 40 in 9 chemo sessions, but then rises from 40 to 52 after all visible signs have been removed through surgery and that’s followed by another 9 chemo sessions.

Fingers crossed it’s not as sinister as the thoughts in my head, but we were hoping for a result under 20 from the previous trend to 40 and then the additional treatment since then. We definitely weren’t thinking it would go up.

🙁🙁

[Natsmb]

Yes. My numbers went up post op. A possible reason is, the operation itself has a risk of releasing tumor cells from what was once an enclosed tissue and these are showing up on the lab tests. The reason they won't continue treatment could be that they are considering the treatment isn't working (which was when they stopped mine altogether) or they have to revaluate later with further tests before justifying loading your wife up with horrible chemicals. That would be my consideration. I definitely would get another opinion for sure.

[Lamets in reply to Natsmb]

Thanks Natsmb,

Do you mind sharing what your numbers were and what treatment if any was offered to you?

The treatment pre op went very well with CA125 going from 2400 to 40 and tumour size reducing from 3cm to less than 1cm

Surgeon was happy with debulking and then another 9 weeks of chemo.

Last CA125 count was three months after surgery and 6 weeks after last chemo so would have thought that any ‘disturbance’ caused would be fully gone by now??

Current oncologist says to wait another six weeks have a PET scan and another set of bloods.

Also says further surgery would not be an option and that you get one shot at a cure which was the chemo and debulking already completed.

[Jacky5]

My CA125 went up after debulking too. I understood it to be a result of the normal inflammatory reaction to the surgery. The levels gradually came down back down.I can't answer the second part of your question regarding maintenance treatment im afraid but I'm sure others will be able to help you there.

There is a webinar on this site about Parps, how they work and which patients they can be helpful for.... though the talk of availability relates to the UK NHS.

That may be useful to you.

All the very best to your wife and you.

Liz

[Lamets in reply to Jacky5]

Thanks Jacky

How long post op did it take to start to see the reduction?

The CA125 of 52 was the first test we’ve had taken post op and it’s been 3 months since surgery.

Thx

Steve

[Jacky5 in reply to Lamets]

Hi SteveJust looked at my results .

August 2019 after 3 lots of chemo level was 24.

Op was September.

October level was 54.

December it was 26.

So the level at 3 months was still a little higher than pre op.

As this is the first post op test you won't know if the level was actually higher at say a month post op and is now on the way down.

I completely understand your feelings regarding the highs and lows and the constant waiting for results is like torture.

Really hope your wife's next result is going in the right direction.

Liz.

[Jacky5 in reply to Lamets]

healthunlocked.com/ovacome/...

Here is the link to the webinar posted by another member which you may find useful.

[Lamets in reply to Jacky5]

Thanks so much for this info and the link

[SUE7777]

Hi Steve, I don't think there is a problem with the treatment and things have gone well. I think there's a problem with communication with the oncologist, this problem is quite common and you have a choice to get a 2nd opinion or to find an oncologist with a better communication skill. All the best Sue xx

[Lamets in reply to SUE7777]

Thanks SueWe’re having a dig around to see what’s available to us.

[delia2]

Hi. My CA 125 is always low but was highest four weeks after surgery presumably from the surgery itself. It was 8 at diagnosis and 6 at recurrence but it was 20 after surgery. So I wouldn’t worry about a small rise.

[Lamets in reply to delia2]

Thanks Delia,

I hope that you are progressing well now. We’ll see what the next test result brings, hopefully good news.

🙂

[Suds0812]

Hi SteveI was very similar to your wife Non Braca gene present... i was diagnosed stage 3c.. and i opted for 3 chemo sessions followed by debulking surgery and then 3 more chemo sessions...my c125 was 1043 at start of treatment went down to 508 just before surgery... by the end of treatment went down to 7... was clear and stable for 6 months when the routine blood test should an increase in my c125... was back up to 734...i also feeedback to my team that i was suffering from tiredness (although i put this down to me returning to full time work) after a scan i was told that i had recurring ovarian... which led to another 6 months chemo.. i then was put on a maintance programme with the drug Niraparib.. which is offered here in the uk for people who have a recurring (it has now just become avaliable for all even after the first cycle of chemo)... touch wood im doing okay... and carrying on with my journey however uncertain it maybe... just take everyday as it comes and try to find something thankful init... however small... i wish your wife and family all the very best in your journey

[Lamets in reply to Suds0812]

Thanks Suds, it’s a horrible thing to have return I am fearing the worst due to oncologist ordering a PET so soon after the previous one and end of treatment.We have a PARPS available in Australia but only if a positive recurrence is diagnosed.

We were hoping that we could get something sooner for peace of mind although we don’t know the full effect if it is not needed.

It just seems weird knowing that everything was going so well and we now would need to wait a further six weeks until after a positive ‘it’s back’ until the PARPS is prescribed.

Oncologist stated that the outcome of using a PARPS, positive or negative wouldn’t change even if we wait the additional 6 weeks.

Thank you for sharing and we pass our best wishes back to you and your family.

[Cumbrianlass5]

I am BRCA negative and have been put on the Niraparib PARP inhibitor. This is in the UK. Hope it is available to your wife. Best wishes x

[Lamets in reply to Cumbrianlass5]

Hi Cumbrianlass

Was the inhibitor prescribed after your initial treatment or was it after a recurrence had been diagnosed?

We are from the UK and thinking we could return for what seems to be better treatment options, although that would be life changing for the whole family as we have two teenage daughters who have been brought up over here in Oz.

I hope that your current treatment is doing positive things for you and best wishes as you work through this.

Steve & Joanne

[Cumbrianlass5 in reply to Lamets]

It was after initial treatment. Your are supposed to be given it within eight weeks of end of chemo but I did not get it until 12 weeks after as first onc said we should Watch-and-wait.

Second opinion at the Northern Centre for Cancer Care at the Freeman Hospital, Newcastle, started it immediately. Also got an opinion from Christies, Manchester, and they also recommended it. Newcastle is much closer to us so went there.

I keep reading it is given after recurrence but I had just had first round of chemo over 18 weeks. Only started it a couple of months ago so do not know if it is working yet but at least it gives me hope.

Best wishes on your journey to better health x