Monitoring for recurrance

[TTbatty]

Morning ladies. Please tell me how you are monitored after 1st line treatment. I've been told nothing over 3mm visible ( as of September 23). Then torture of 3 weekly bevacizumab for 9 months. Along with lynpraza (ongoing). Mentioned a pain lower left recently, Dr pressed there and said nice and soft, nothing to worry about. But...if there was something, maybe 5mm, would it be felt ???? They never "felt" anything before the ct scan showed it was all over abdomen !! And therefore advanced, in 2023. Do you have to request a scan?

UK NHS

[Sunsetime]

Hi, I’m on Bev and Olaparib maintenance, no regular CT scans, my C125 is taken every 21 days, in the past this has been a good indicator for me. I am going to ask about scans in my next oncology appointment.

[Gonewith]

hi, i was same as Sunsetime last October but when stopped Avestin last June my C125 keep going up. I had Pet scan done in Sep and in one lyphnode there were live cells (they saw that in an scan a year ago anyway) and believed under my belly botton is inflamed. My surgen decided no surgery and radiotherapy team said not a right thing to do. So , my Onco and I decided is chemo then. Then I had ct scan done. Ive done 2/6 chemo now and after 1st one my ca125 was halfed from 517 to 288. Hope this help you. Xx

[Bookclublover]

Hi, I finished first line chemo in Feb24- NED

Started 200 Niraparib April 24. Currently still on that but CA125 has been rising slowly since July24, now sitting at 37. I know this is comparatively low, but it was only 85 at diagnosis.

I live in Scotland where the policy here for folk like me is generally a CT 4 months after first line, moving to 6 monthly thereafter if all appears normal.

My team would say that I’m monitored monthly via Niraparib/CA125 bloods and phone call. However I’ve just had my 6 month scan and am feeling a bit like you. I’ve had twinges here and there since December and wish that I’d asked for a scan sooner as they thought I had very low volume disease at diagnosis which proved incorrect. To be fair, they’re very responsive here to requests/ concerns but you need to be on top of it.I’ve been reassured during monthly calls given the slow creep of CA125 and try to live with a positive outlook, but maybe I’ve been like the proverbial ostrich!

Anyway, long answer short-if you’re worried about anything you should raise it with your team. Good luck ! X

[nordic5]

Hi, I'm on Olaparib (FIGO 3C 2022.) Ca-125 every 4 weeks, CT every 6 months regardless of ca-125 level (it's requirement of the drug trial).

[Gerontious]

Hi there

[Gerontious]

Good afternoon, I had 6 sessions of carboplatin/paclotaxil following recurrence of ovarian cancer from 9 years ago and is now in the peritoneum. I'm now on maintenance Naraparib . My CA125 Has been rising steadily over the past 4 months so I was given a PET scan in November. The scan was clear. My oncologist said that whatever is there it can't be picked up on the scan. I queried why the CA125 has been rising and she said that it can rise for any number of reasons and also some people are more sensitive to the CA125. I'm having another PET scan at the end of February so my oncologist is looking after me very well. Needless to say I'm praying the scan is still clear. Every ache and pain is a worry but probably not related. However I would suggest you ask for a PET scan which is so much more detailed than a CT scan. Very best of luck.

[TTbatty in reply to Gerontious]

Thank you

[Saintgermain]

I'm in the states my CA125 is a good marker for me after the post front line chemo CT which was clear I continued to get my pelvic exams and blood draw every 3 months and was told to listen to my body if something doesn't seem right contact them. I get Bev every 3 weeks its really a piece of cake 30 minutes and done you getting it 3X a week never heard of that.

[delia2]

I’m in the States also but would just say that just because the oncologist can’t feel anything doesn’t mean there’s no cancer and I would not settle for that especially because you were not ned after frontline. On my last recurrence I had no symptoms but widespread small nodules. So push for a scan!

[SopSinger]

Stage Ic here, never had a scan since the one after chemo, which was in January 2007. My oncologist monitored my CA125 until she discharged me, then my GP did the follow up. Still here nearly 19 years after diagnosis.

[JOY202452]

Hi. I would ask for a scan, and explain why.

[March2017]

Hi I was diagnosed stage3b march 2017. I’ve had 3 monthly checks ever since , I’m now on 6 months. I’ve been told that they would have discharged me after 5 years but as I have BRCA2 I will be checked regularly for the rest of my life . Hope this helps c