My wife was diagnosed with Stage 3 ovarian cancer back in September 2020.
Due to the extent of the tumours an operation pre chemo wasn’t an option and she went through 3 cycles (weekly taxol for 9 weeks and carbo platin every 3rd week) before debulking surgery back in mid-Jan followed by the same 3 cycles.
CA125 levels were 2500 at diagnosis and have continued to drop during treatment to 40 pre op.
PET scan showed clear three weeks after op but follow up blood test this week has shown the CA125 levels to have increased to 52.
We were both a bit shocked with this as we had hoped the debulking and Chemo post operation would have lowered CA125 to at least normal levels (less than 30).
Has anyone had a similar experience with the count increasing post op??
Also during the Oncologist visit this week she mentioned that If relapse occurs then surgery won’t be an option.
She also mentioned that until relapse occurs/can be confirmed there are no inhibitor treatments available to us in Australia as my wife is BRCA negative and there is no evidence of inhibitors working before relapse in non BRCA patients.
Are there other non BRCA patients who have had inhibitors post op with no medical reason (ie no relapse and CA125 at around 50)??
Just wondering what options others have taken if they have had a similar prognosis.
It’s a roller coaster of highs and lows and following the high of completing 18 chemo sessions and surgery and going into remission this has knocked us straight back to the uncertain future of the original diagnosis.
It seems you are at the mercy of the oncologist and their ‘standard’ treatment regimes. We feel that rather than wait another 6 weeks for a CA125 result and PET scan which is the ‘standard’ treatment we should be doing something now rather than waiting for a positive tumour being diagnosed through the PET scan.
We’re thinking second opinion, clinical trials etc etc
First post so a long one but any input/opinion most welcome.
Has anyone had a similar experience with the CA125 count increasing post op??
Any inhibitors used for non BRCA and relapse diagnosis??
Is it another case of waiting and doing nothing until a relapse can be confirmed by a positive PET scan result??!
Thanks for reading,