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
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.
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.
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!😘
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.
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!!
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.
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
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.
3 monthly follow ups
Timing of follow-up CT scan?
First check up
Follow up regime
Is there such a thing as normal follow-up care ?
