possible recurrence…

[sarah040866]

Hi ladies,

I am stage 4 and have had 2 lines of carbo/taxol/avastin

I am having an MRI scan today and have had a CT scan, my symptoms are a little bit of bloating and pain in my tummy and other areas since September last year when my ca-125 started increasing from 66, going up and up and now at 650 just before Christmas. I am concerned that something should have been done sooner, it’s like they don’t listen to you when you tell them what you are feeling. It seems a set type of treatment is dished out and I don’t feel my care is as good as others I have read on here or a friend of mine who I met through our mutual cancer diagnosis (Yorkshire) and I’m in Dorset.

I have a nurse specialist who I can call, but they never answer their phones and if you leave a message it seems the message drops off after there are too many messages left and they don’t listen to it or get back to you!

everytime I voiced my concerns about my CA-125 rising so rapidly I was told well it’s not a definitive picture of what’s going on and other factors can cause it, I’m sure you’ve all been told that too. I’m so worried it’s recurrence, I was diagnosed in March 2019 so almost 5 years since diagnosis.

anyone else had recurrence and finding it difficult to eat much at all? At the moment I am living off hardly anything and loathed to keep cooking meals I can only eat a couple of mouthfuls of, so sticking to fruit and yoghurt, and weetabix…soup and things that won’t fill me up too soon.

I’ve waffled on enough but if anyone can let me know if they are the same I’d be grateful. My onc appt is on the 16/1 to discuss the scans and see what’s going on….

Thank you 😘

[Izoominka]

Hello, Sarah! I'm sorry to hear about your experience, I totally understand you, I'm in Dorset to and have a recurrence, what hospital are you?I'm in Poole and have the same problem, I feel left alone with my worries, it's very difficult to get response from my team, started new drug Trametinib, got really bad side effects, no one there to guide or help with anything, thinking of trying the PALS, perhaps that will change it for better. Would be happy to chat to you and hear more about your treatment, hope you soon will get some answers, meanwhile keep strong, with best wishes, Dee!

[Leniko]

I sometimes feel that way too. I’m going to a top notch NY facility, but they have more of a “let’s wait and see” attitude. We are seriously considering a second opinion at Anderson in Tx. Maybe look into another facility to get a second opinion for you as well?

[Moonbeams33 in reply to Leniko]

Based on my recent experience whereby my CT scans showed NED but my CA-125 rose from 10-87 in a few months after stopping chemo I would insist on a PET/CT scan. My results just came back and showed 2 peritoneal lesions on left and right side of pelvis. My doctor wants to try and eliminate these in very early stage. The PET scan also ruled out an area that CT radiologists thought was peritoneal metastisis located in another region that was part of my surgery site but my doctor didnt see in the same way. PET/CT clarified that it was not a problem. Good luck to you!