I need your help-advice one more time…

[Roulasim]

hi everyone-I need your help-advice one more time-I am completely confused-disappointed-anxious-depressed…I am fighting with this disease 10 years now-I have been on olaparib since August 2020 after my reoccurrence…my ca125 has started raising since October which was 19-I had a scans end of November which where clear-Ned my ca125 was 28 then and now it is 80-a month and a half after my clear scans-my only choice now is a pet scan-my question is what should I expect?the worst senior of a reoccurrence?how can this be possible with clear scans?what’s going on?..please answer me

[Lyndy2]

Hi Roulasim

I can only offer my own experience. On Olaparib since May 21 after recurrence. Ca125 rising v slowly, Ned scan in April 22, then nodule spotted in Nov 22 ca125 shot up.

PET scan shows evidence of disease in 3 nodes, so on to a trial (hopefully) via Marsden.

I would suggest you go for the PET because it shows up active disease. Then at least you will know what you are dealing with. x

[Roulasim in reply to Lyndy2]

thanks a lot!!!

[Tulips66]

Hi, have the pet scan as soon as possible & this should answer your questions. Hopefully all your doubts & fears will turn out to be nothing. I had a pet scan after my last operation for a recurrence & it showed up a couple of nodes in the abdomen. I then had chemo again & they have shrunk. Starting on Niraparib next week so hopefully it will keep me stable. Keep me updated on how you get on & 🤞

[Ruebacelle]

Well pet scan will light up cancer cells the scans might not detect. Am so sorry you are going through this please stay strong and get the best advice you can. Hugs from paris

[Bananasmoothie]

Hi, one of the many issues with OC is that it tends to present / recur as a few relatively small areas of cancer cells rather than one big lump of them. Small areas are much harder to see on a scan even though added all together there are enough cells to make the ca125 go up. Until the small areas grow enough they can't be seen on a scan. Even PET scans won't see very small areas until they grow a bit.

On the other hand, the Ca125 can go up for reasons other than recurrence (such as bowel infection which wouldnt necessarilnecessarily show up on a scan). These things will often get better on their own.

This is why Doctors will often suggest waiting and then scan again. Having lots of scans close together isn't often helpful and gives a lot of radiation. It's all a balancing act which can be difficult, worrying and frustrating to be on the end of. We're all thinking of you and I hope this helps a little bit.

[Dales-Rambler in reply to Bananasmoothie]

Very useful information. I often think the term " no evidence of disease" when referring to a CT scan should always be amended to "No VISABLE evidence of disease", for as you say, sometimes small areas of recurrence are not immediately sensitive to CT scans.

Best wishes.

Sally

[Roulasim in reply to Dales-Rambler]

I can totally understand what you mean-the thing though that baffles me is that 1 month and a half later I had a CT scan and a MRI scan that both were clear-isn’t it a short period of time for a pet scan to show something?

[Dales-Rambler in reply to Roulasim]

It's all about the 'sensitivity' of different scanning / imaging modalities, as no one method is intended to be 'sensitive` to all types of' disease / pathology'. Some are good at looking at body structures (CT, MRI, Xrays), whilst others are used to look at the process / function in certain body areas (Nuclear Medicine, PET scans consider 'uptake' or cellular activity) That's why a combination of scans are useful to give a complete picture. It's a bit like comparing different chemo / treatment methods for different types of cancer. They all work in different ways and target different things.

Hope this brief explanation helps you get your head around what is a complex area of medicine.

Regards

Sally

[NewtonEmma1900]

I too had rising CA125 but after my initial 6 cycles of carbo/taxol/avastin. My scan showed NED . Consequently my consultant put me on avastin alone. CA125 then rose rapidly so I was sent for a PET scan which showed disease in my lymph nodes. I am just finishing 6 rounds of carbo /caelyx and CA125 is down to 9. So go for the PET scan! Best Wishes Katy . 🙏

[OvacomeSupport Partner My Ovacome Team]

Dear Roulasim

Thank you for your post. I’m so sorry to hear how confused, disappointed, anxious and depressed you have been feeling recently. Please know that the Ovacome support team are here to support you at this challenging time. I can see you’ve had some supportive replies from our forum community which I hope you have found helpful.

I wondered whether you have had the opportunity to discuss your queries and concerns with your clinical nurse specialist or oncologist? They should be able to provide you with personalised guidance and advice about the recent raise in CA125 and proposed PET scan, considering your individual circumstances and medical history.

In addition, I wanted to let you know about the different ways that you can contact the Ovacome support team, should you ever want to talk things through. You can call our support line on 0800 008 7054, email us via [e-mail] or send us a message directly through this forum. We can also schedule 1-to-1 video calls if you prefer, with more information available through this link on our website: ovacome.org.uk/forms/1-to-1... . We’re here to provide information resources, help with questions or prepare and plan for appointments with your clinical team if you think that could be useful. We can also just have a friendly chat about anything that’s on your mind. We’re here for you Monday – Friday, 10am – 5pm.

I hope the upcoming PET scan goes smoothly and that your clinical team are able to provide some clarity and reassurance soon.

Best wishes

Annie – Ovacome support