Follow up after treatment.

[hilaryjane]

Diagnosed stage 3 hgs oc April 2021. Chemotherapy and debulking surgery and then 10 doses avastin. NED May 2022.I have been having 3 monthly CA125 tests since then which I think the new CNS follow up service want to change to 6 monthly. Scans are not part of the follow up here which my GP was surprised at, so I'm wondering what other women are offered in other parts of the UK.

Thanks

[delia2]

Hi. I’m not in the UK but I think most people only get scans if they have symptoms or their CA125 rises. In my case CA 125 is not a marker so I get scans every six months. It’s normal to be checked every three months for two years.

[Robbo16]

I’m in England and I get 3 monthly CT scan and CA125. My last active treatment was April 22 (2nd debaulking surgery). No chemo since January 21.

[Jannibags]

Hi! I'm 3 years in and had 3 monthly follow up with my consultant for the first year and then she moved me to 6 monthly as I was stable, and, so far, I still am!🙏🙏🙏🤞🤞🤞. I don't have scans, just CA125 and physical examination, suppose I would get a scan if I had symptoms . I'm in North Manchester. I think maybe the view is why expose us to radiation unnecessarily , which makes sense really doesn't it? I suppose it would be different if the CA125 wasn't a marker to begin with, but it was for me. I was fortunate to be at an early stage, 1C1 borderlines/low grade serous. Hope you continue to be well!😘

[mrstadpole]

At the moment my CT scan has confirmed that I am cancer free.I was diagnosed in 2017 with the usual procedures and have been taking Olaparib (PARP) for 3 years.I always have a monthly blood check at GPs followed by a monthly phone call from oncologist.Scans about every 9 months.I always have had this.Before covid it would be face to face appointments.

[Purplepansies54]

Hi there Hilaryjane,

I am in Lancashire and finished frontline treatment in May 2022 and am on Niraparib. I had two follow up scans 3 months apart and am due a third scan this April which will be six months after my last one.

I agree about the radiation though, if not needed I would prefer not to have that many. It’s always a balance isn’t it as this horrible disease comes back so quickly for some people. My CA125 is a good marker for me and is very low atm, I suppose if CA125 isn’t a good marker then the only way to check there is no recurrence is through symptoms and a CT scan.

Long may you continue to be NED!!

[Saintgermain]

I'm in the US low grade Endometroid 18 months NED I only get a scan if something feels off I was having some upper abdominal pain my Gyno/Onc didn't want to do a scan so I called my Primary to order it as I was paranoid showed some inflammation in the intestine was due for my colonoscopy had that all fine. I was switched to alternating every 3 months with my Gyno/Onc for pelvic exam and Oncologist since my CA125 is a good indicator for me I have that done every 3 months.

[AnaJim]

Hi Hilaryjane,

I finished active treatment in April 2022 and have had 3 months check up for the first year. My oncologist confirmed today I will be monitored every 4 months from now on. She doesn’t order scans unless bloods look abnormal or you have concerning symptoms.

I am being looked after by Buckinghamshire Healthcare NHS Trust. It looks like each Trust/Region has different protocols, I suppose it depends on your personal circumstances as well. I was diagnosed Stage 3B HGS, had debulking surgery and 6 Paclitaxel/Carboplatin sessions. NED April 2022.

I wish you all the best!

Anax

[hilaryjane in reply to AnaJim]

Thanks, seems there a small variations in follow up pro endures. I think I will try to continue with 3 monthly CA125 tests for a bit longer.Keep well everyone.