What should I do - follow-ups not feeling thorough

[OrdinarySoul]

Hi everyone, before I start my question I want to send out love to everyone on here and I really wish being well for everyone. I wish there wasn’t a load of experts on here because it means we are all in this.

I was diagnosed in 2022 - they thought they would find ovarian but they were surprised to find that it had actually started in my womb and spread to my ovary. So I had surgery, chemo, external radiotherapy and then horrible internal radiotherapy. That all finished February last year and I’m pretty well at the moment - just uber sensitive to any little twinge. Current mild back ache.

Anyway, my ca125 has been 9, 12 and 14 on the last three and everyone just says don’t worry because it’s in normal limits but it’s going up and I feel nervous. My next follow up is in March. Should I ask them to do my bloods again sooner? I know it means all sorts and not recurrence always but I’m scared.

Thank you,

Beth x

[SuffolkJen]

Hi Beth, like you I was diagnosed in 2022 and finished treatment last January. I had clear cell OC stage 1a.

I also have my next follow up in March. I can understand why you are getting a bit nervous about your rising CA125 numbers I would be too, even though as we know they are still low and many things could trigger the rise.

If I were you I’d wait to see what March brings as it’s not that far away and if it’s risen again I’d ask for further investigation ie a scan.

Wishing you all the best Jen xx

[OrdinarySoul in reply to SuffolkJen]

Thank you for replying Jen. It’s so hard to stay logical sometimes and I have to remind myself not to fast forward to what could be happening without actually knowing! I hope all is smooth with your next follow up x

[Hidden]

I too would sit it out till March, if you can. By then you will have more info (are your symptoms better/worse/the same + the latest ca125). Depending on how things are then, you may be offered a scan or closer monitoring. The really hard part is adjusting to the possibility of recurrence, so be kind to yourself in the meantime xxx

[OrdinarySoul]

thank you for replying - it’s just so hard to not get swept into panic and second guessing everything. Luckily I’m distracted by my kids a lot of the time but it’s the down time, especially as a single parent, when I have to sit with my thoughts!

[lesleysage]

Hi OrdinarySoul, I'm almost13 years since first occurrence and 11 years since second and when my CA125 rises I am still the same as you describe. Mine has risen and dropped on three different occasions, once because the Health Authority changed the lab which analysed the results (!!), another because I needed another major surgery for bowel cancer and the internal inflammation caused it to rise and most recently because??? Don't know!

My GP accepts that after two different cancers, I'm very twitchy so did authorise another CA125 after three months which returned as stable at 14...having been 8, 9 or 10 for the eight years between the last ovarian cancer and the new bowel cancer. I wish I could say it 'gets better' waiting for results etc. but I think I am just quicker at recognising my anxiety and not embarrassed to share that 'irrational (or not) anxiety' with the GP. I am also more practiced at moving my mind towards things, experiences and people which nourish my humour and love of life. Be kknd to yourself is one of my mantras! xx

[Saintgermain in reply to lesleysage]

Hi Lesleysage, Your post of time between recurrences gives me hope as I just finished 6 carbo/taxol for my first recurrence. My CA125 has been a good indicator for me went from 15 to 500 in 3 months presently at 14 showed up on Pet Scan. Thank you

[Cheka123 in reply to Saintgermain]

are recurrence treatable i have recurrence shortly after first round of chemo very nervous

[Saintgermain in reply to Cheka123]

Recurrences are treatable if your platinum sensitive like myself it was Carbo/taxol like front line

[OrdinarySoul]

thank you so much for replying - sounds like you’ve been through a lot. I hate thinking that there are so many people that get how it feels because that means there’s so many people having to cope too - I think I probably need to check back in with my GP around checking bloods in between my follow ups because at the moment I feel like anything cancery has to be done through the hospital team but maybe if I can get a relationship with a GP who understands that might be the best route for reassurance. Thank you again. Take good care xx

[Cheka123]

yes please do i was out of system for 22 weeks and had a recurrence i am made as begged them for follow up my numbers high and now having problems demand it you know your body

[Leniko]

I would. You must be your own advocate! ❤️🙏

[wendydee]

It’s understandable that you’re worrying. We all do, even after years and years of NED. However, the level of your CA125 is well below the level which needs to be investigated. That’s now 30-35 I believe. Even after years of good results I was always convinced ‘it’ had come back. Try to keep yourself as healthy as you can, focus on nurturing your health (good eating, occasional treats, walks in nature etc) and keep monitoring any really unusual symptoms.

Wendy xx

[Morini]

Since finishing treatment in 2022 I am on 4 monthly blood tests. I can truly empathise with your reaction to small rises. I have no tips for dealing with it but just wanted to say that you are not alone with this.x