Peritoneal serous cancer

[carolesuz]

Hello everyone. I wonder if anyone can help. I’ve was diagnosed with peritoneal cancer in sept 2019. I was told that surgery would be unlikely to benefit me as it was too widespread and diagnosed as very extensive widespread small volume disease. The oncologist said that small volume disease reacts well to chemo. I had 6 sessions of chemo and now on avastin until November. I had a ct scan end of December which came Back NED. but I had ct, mri, and ultrasound scans. None of these showed up my cancer the way they found it was through a laparoscopy. How will I know when it’s back.. would a PET scan show it up? My stomach is swollen and I suffer badly with acid reflux.. apparently I have small hiatus hernia. Sorry this is so long and hope there s someone out there who knows the answers.

[drdu]

Hi Carole. Welcome to the club! Does your cancer not show up in CA 125 blood tests? Maybe not, some don't.

All best wishes.

Eileen x

[Hidden]

Hi Carole. I have found PET scans to be the most effective. These days my onc orders a CT & a PET scan to be carried out at the same time. I have found that CTs alone, do not always show new growths until the next time carried out. Likewise ultrasounds & needle biopsies don't always show up all that may be there. Not sure about MRIs.

Avastin is able to keep new growths in check as long as they're not growing aggressively.

Best wishes. Pauline.

[SUE7777]

Hi Carole, I was in a similar boat, they thought I had Peritoneal OC but it turned out to be serous high grade OC diagnosed after the debulking op. my cancer doesn't show on scans either. The CA125 blood tumour test is a good indicator and I usually ask what it is after a blood test. This marker is different for everyone so don't try and compare.Take care and good luck. Sue xx

[Holdingontohope]

Hi Carole, my mums ca125 was slowly rising and was in the hundreds, she has the same as you and is very poorly at moment, her symptoms are very extreme, she has just had her 2nd chemo, sorry to ask but how were you symptoms in general, mum is swollen too and awful reflux amongst other symptoms, could I ask did you feel better after the chemo? I'm struggling to find much on peritoneal cancer, all I seem to find is things about tumours which my mum doesn't have, all her scans are showing ned but her ca125 was the giveaway and not feeling well X

[carolesuz in reply to Holdingontohope]

Hello I’m sorry to hear about your mum. I agree there isn’t much info on peritoneal cancer. Dr did laparoscopy and said it was too widespread to operate. Oncologist said chemo works well on this cancer. I had 6 sessions with avastin. And then 12 more sessions of avastin. I had a scan which was clear but my scans Never showed up my cancer. I’m feeling quite well although stomach bit swollen and suffer with acid reflux so trying to change my diet. I’ve been told it’s incurable.. I did feel better after the chemo but we all react differently and the side effects bad the first week after chemo. My level came down from 280 to 18 after chemo. I hope your mum feels better soon x

[Holdingontohope]

Thank you for replying Carol I will let my mum know that you started to improve and wish you well X