Hi, I’m newbie with a recent diagnosis of mucinous ovarian cancer, expansile type, Stage 1C1.
After laparotomy to remove a 30cm cystic mass plus TAH/BSO & biopsies, no further treatment is recommended by MDT.
I’ve an appt in Jan to discuss putting me on PIFU (patient-initiated-follow-up), which I find a bit scary as I know how bad I am at putting things off—it took me months to get round to seeing the GP re my huge belly.
I was wondering if anyone else here has a mucinous ovarian cancer diagnosis and also what others think about PIFU
Hi ClootyWell
Welcome to the Online Community and the Ovarian group.
I am sorry to hear that you had a diagnosis of mucinous ovarian cancer and hope you are recovering well from your surgery. My own surgery was for endometrial cancer and I also had a hysterectomy with BSO.
It sounds like January will be your post treatment appointment where they check you over and talk to you about what happens next. I am actually on PIFU for my own cancer, although I did have face to face appointments first. Mine was also a stage 1 but a high grade which is why I think I had face to face appointments first.
With PIFU they will talk to you about what you need to be aware of and give you details about who to contact and when. My PIFU takes me up to 5 years post treatment. So I am still under oncology and can contact them at any point. If I develop any concerning symptoms then I would be given an appointment and likely a scan.
I found moving to PIFU was good in a way mentally as it meant the hospital visits stopped, however although the appointments were tough at times, they were also reassuring.
When you have the meeting in January there is no harm in asking whether you can be seen face to face or even have a telephone appointment for the first 6 months or so.
If you wanted to talk it through first then do give the Support Line a call.
They are there from 8am-8pm every day.
Jane
