Update and advice needed!!

[ORGM]

Just a quick update and would also appreciate any advice.My lovely mum has met with the Consultant who reviewed her images. Ca 125 was 239. MRI liver normal which was great news. However, they are now requesting tumour markers for the pancreas and liver along with a biopsy of the peritoneal mass. The Consultant stated that he only dealt with facts and would review my mum with all the results in a couple of weeks. Waiting is just horrendous and my mum has become very anxious. I got the impression that he doesn’t think the ovary is the primary although he didn’t say that. Mum has no Ascites in the abdomen which he would expect to see and still has no symptoms. She had cysts in both ovaries and a peritoneal mass with what he described as lumps in the cavity. Mum has had 4 UTI’s in 5/6 months and slight discomfort with these but nothing else. I would appreciate any advice from anyone with similar experience. Thank you xx

[Jud15]

Hi, I was diagnosed stage 4 just over 5 years ago. My consultant ordered markers for both bowel and pancreatic cancer even though he was almost sure it was ovarian. I had no ascites and a CA 125 of 80. I was also biopsied. I also had thought I had a UTI, but it was in fact pressure symptoms as I had a 'frozen pelvis' of tumour. So I think your consultant is merely ruling out other cancers and trying to confirm diagnosis with a biopsy which is a best practice approach. I hope this helps as I know it's such a stressful time in this unfamiliar new world you and your mum have entered. Judith

[Motiva in reply to Jud15]

Hello Judith,

That is encouraging to see you mention 5 y post diagnosis period. Have you continued on a maintenance treatment?

Frances

[ORGM in reply to Jud15]

Thank you for your message this has helped so much today xx

[Motiva]

Epithelial cancers can present with peritoneal lesions/masses and apparently ‘normal’ sized ovaries. The initial investigations are long and anxiety ridden but provide the best information to construct a plan.

Your Mum had a good advocate in you.

My treatment starts tomorrow after an i tools presentation on the 1st March so can empathise about the anxiety inducing waiting.

Good luck for a speedy treatment plan formulation.

F x

[ORGM in reply to Motiva]

Thank you so much for your message. Good luck with your treatment and please keep us updated on your progress. Consultant has thrown us completely as we thought it was the ovaries and a mass in peritoneal cavity. We have now been told there is a doubt that this is primary, hence the biopsy tomorrow. So worried that the cancer is so advanced they can’t treat. Mum is well physically but really struggling mentally since Mondays appointment. We are all supporting her but it’s hard with so much uncertainty to be positive. Thank you again xx

[Jud15]

Not initially as I started on Avastin with my first line chemo and it gave me a fistula. After my first reoccurrence I started on Rucarparib a Parp but stopped it just before last Christmas after about 8 months, as it wasn't working. But I'm BRCA negative and it works best on those who are BRCA gene positive. Judith

[BridgeySWMummy]

I know the waiting is really hard but I know my mums cells didn’t present as they initially expected for OC. I do think them testing other places is a good thing, I was told that knowing where the first cancer is helps decide which chemo drugs are best to fight it so the waiting and finding it hard is normal and sadly what we have to go through. Good luck