Follow up regime

Hi you lovely women, I just need a bit of advicE.Diagnosed in July 2015 with Primary Peritoneal cancer, had Ovarian cancer Stage 1 12 years ago.This time Chemotherapy debulking surgery then debulking and at the moment in remission. Anyway during my last appointment in November my oncologist who I have great faith in said from now on no more bloods/sans he will just monitor if any symptoms occur. I am due my next appointment next week and the more I think about it I am getting increasingly nervous that no investigations are going to be carried out. I would be grateful for any advice or your experiences. Thanks

13 Replies

  • I've heard this quite often on this site and people do feel unsettled not having checks. As a contrast, I was followed up every three months (Ca125 and physical examination - no scans) for two years following the end of chemo. I had just moved to six monthly checks and it was me having symptoms of bloating and a stitch-like pain which alerted them to my recurrence not medical checks. I've been stable following chemo and Avastin for a further 2 years but have had 3 monthly CTs since my recurrence.

    Hope you can find some peace of mind.

    Sandra x

  • Thanks for your reply Sandra. I,m just 13 months after finishing chemotherapy so I think I might just talk to oncologist and tell him my concerns. Hope you remain st able for a long long time.

  • I have PPC 3b and also a small tumor was found in a Fallopian tube at surgery. I completed chemo almost a year ago. I see my oncologist every 3 months. On my last visit in December, he also told me no bloods before the next visit. That puzzled me as my CA125 had risen 3 points. When I was checking out, I asked the nurse to schedule me one and she did. Maybe I am going behind his back but I want to know. He'll forget that he said no bloods anyway, I am sure.

    He also does no scans unless symptoms appear so the only CT scan I had was before debulking.

  • Thanks,I just think it strange that DIFFERENT ONCOLOGISTS have different regimes,I decided I am going to ask for a CA 125

  • If I hadn't had regular bloods I wouldn't have known it was back and as I had no symptoms I'd have been in a position where surgery was no longer an option. I think it's about saving money. Your GP will have bloods done for you. I wouldn't be happy with no monitoring. After all ovarian on the move isn't easy to notice at the best of times

    Good luck with your appointment I hope you get the care you are entitled to

    LA xx

  • LILY, Thanks for your reply, I am like you I have decided I won,t be happy without some kind of monitoring other than watch and wait

  • Hi Lovely,

    For some people the CA125 is the only way they can tell it's back.

    My special person is consistently in pain and often has symptoms but on paperwork she's fantastic her CA125 was 10.8 at the last blood test so we kind of have an idea of what's going on. She's classed as dormant rather than remission and as a family we prefer that word so we can keep a reality check on it.

    I would advise you not to let them stop your CA125 if that's what keeps your mind at ease.

    Good luck and keep us updated xxx

  • I was diagnosed with PPC in April 2015. Had chemo, debulking, more chemo, which removed most but not all of the cancer. Since January 2016 I've been taking Tamoxifen and on 3 monthly checks. I've had blood tests every 3 months and an internal gynaecological examination and sometimes also a CT scan. The oncologist always stressed the main thing was how I feel. However this was all in the Netherlands. I moved back to UK last month and am waiting for appointment at Guy's Hospital to continue my treatment, so not sure what their approach will be.

  • THANKS Alison, Interesting to hear how other countries deal with it

  • I so understand how you feel... I don't have the same type of cancer but clear cell cancer (my diagnosis) is an aggressive little beggar .... I feel lucky that it was caught early and I am thankful I'm alive when you hear the word cancer you think omg how long do I have ... I was terrified of chemo because I saw my dad go through it but that was 17 years ago and things have moved on and it was not as bad as I had expected .... you cope and get through it all....the statistics on google are out of date women are fighting over and surviving ... the stories of the lovely ladies on here are inspiring and has helped me to keep fighting... none of us know what is in our future and living in fear gives extra stress that we don't need... so I've decided that cancer has exited my body I look at the massive scar and think yep it's gone time to get my life back.... if it comes back again I will fight but I'm not letting it rob me of my life now 🤗

  • I certainly understand what you're saying. What would concern me is the idea of keeping an eye out for symptoms. I was told this after my first NED but to be honest I never had any symptoms either first time or second time round. Ca125 was my one and only warning sign. I insisted that any bloods taken both at GP or hospital setting included that. Good luck! X

  • After my 5th chemo finished at the end of June 2016 I was told by a new stand in Oncologist that I would not be getting an end of treatment scan nor CA125 blood tests. I politely but assertively said that whilst I didn't want or need regular scans that I DID want an end if treatment scan and regular CA125 blood tests every three months, that while my CA was only 30 at diagnosis and 13 on that day, that post treatment it's the TREND that is also as important. And I just sat there. I got both.

    My CA125 went up to 14 at the beginning of Aug, tiny rise and I wasn't worried, CA125 can be affected by many things . It then went up twice more in Nov (21) and Dec (39) but again I had NO symptoms. So i was interested in what may be going on but not too unduly worried. SENT for a CT scan but all clear in early Dec.

    I was a bit concerned that my Onc said we'd go on synonyms as I didn't really have any before I was diagnosed HOWEVER mid Jan they started - lack of appetite, not bring able to eat , a bloating abdomen and chronic pressure in abdomen plus bowels seemed to stop working. Additional CA125 test that I arranged through my Doctor 25th Jan and that was 2292.

    So for me there were CA 125 rises which may have indicated that something MAY be happening but the symptoms in Jan were the TELL ALL.

    I'd definitely support having three monthly CA125 blood tests so you and your Onc can monitor any trends.

    Some try to not do them as they feel results can worry ladies unnecessarily but I would have wanted to know, so just speak again and state your position.

    Take care

    Clare xx

  • Thanks for that as always great advice

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