Hi everyone, how long on average are we monitored after diagnosis. I assumed I would have CA125 done and then a phone call for at least 5 years from diagnosis, how wrong was I, my CNS has just told me my next call is my last at 4 years. I don’t know whether that’s because she doesn’t like me or as she says hospital policy. She has just told me I’ve been monitored for to long already, evidently it stops 12 months after parps stop, I stopped parps 09/12/21 . See what I mean about not liking me.
Thank you for your advice
Loads of love and luck, Dee XX
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Hi Dee my understanding is that monitoring is for 5 years, it was with my mum. Maybe speak with PALS if you are unhappy? If you arent getting the support ypu need from yr CNS then you can change and they can do this for you. I didnt have support from my original Consultant and they got me a new Consultant. Good luck x
Thank you, I thought the same, just feeling a bit abandoned. I did try PALS, they seemed aware of the complaint before I’d made it, promised to deal with it then I never heard from them again, that was over 12 months ago. Bright side I won’t have to speak with my CNS which is a good thing as she just upsets me every time. It’s so conflicting these are the people that have saved my life, so you don’t want to complain. Many thanks again. XX
Id defo follow it up with PALS. I get what ypu say about these ppl saved yr life but at the end if the day you owe it to yrself to get the best treatment you deserve . Good luck going forward x
my understanding is 5 years, however my consultant in Nov wanted to discharge me after only 3 years! I said no, I have agreed to 6 monthly review for another year. Unfortunately in these times of COVID this is what’s happening, we have to fight not only the Cancer but the NHS system we are in also.
When you are referred back to your GP ask if they will monitor your CA125.
Unfortunately this doesn’t surprise me with the state the NHS is in.Have you got a nice GP? I would speak to your surgery,explain your concerns and ask if they will monitor your ca 125,I’m sure they couldn’t refuse you.
I allow myself to be surprised by them every time I deal with them, but yes I have a good GP so that was my last option. Thank you for your support, loads of love Dee XX
Hi Dee, I’m still being monitored (CA125 testing and a chat with a gynae onc) eight years post diagnosis. I’m at a large London hospital, and was told originally that monitoring would continue for 10 years, but maybe things are different now. Sorry about your CNS. Hugs, Deb x
Hi Deb that’s wonderful, I’d hoped for something similar as the doctor who did the 8 hour operation told me to be careful as the cancer I have is very aggressive, I haven’t spoken to my oncologist since March 2020 and CNS isn’t interested. Loads of love and luck. Dee XX
Hi, I was told this year after 5 years would be my last 6 month check up then go on to yearly with a CT scan that I insisted on. But went to appointment to be told I’d still be seen every 6 months as I was on a trial at the beginning but had to come of it, they want me seen for the next 2 years. I really think it all depends what hospital and who you see. Unfortunately my consultant has left and no one told me, don’t know whose looking after me now but I’ve got appointment for June xx
I to believed it was 5 years, I had a final scan in October 2021 then quarterly blood test, which I thought may have dropped to twice yearly at 4 years but no, next chat in 3 months is the last, that will be my 4th year anniversary. That’s great that you’re being kept on, nobody wants to go but it’s the peace of mind it gives you and your family, fingers crossed you get another nice consultant. Loads of love and luck, Dee XX
Hi Dee, l agree with the other girls things just aren't what they used to be. Sometimes we don't gel with people , but at the end of the day it's your life and you deserve better your special we all our. I think you have to be in our shoes to fully understand . My own GP will do my CA 125 which is how l found out that l had Ovarian cancer in the first place. Please get some advice you need monitoring .Talk to pals your GP. And good luck with everything we all really understand just how you feel. Sending love & big hugs SheilaFxxx
Hi Sheila, thank you for your support and kind words, and I agree, I think all CNS should listen to You, Me and the Big C pod cast, the ladies all talk about everything we have gone through, all the things my CNS told me to pull myself together over. My GP is quite good if I explain I think he will do a blood test every 12 months. Loads of love and luck. Dee XX
Hi. It sounds like this must be a new policy since giving PARPs after frontline only started in 2018 or 19. Therefore you would be among the first cohorts to finish them. I know they are miracle drugs but there’s still a relatively high chance of recurrence at some point. You may be one of the lucky ones but I can’t believe they wouldn’t even see you once a year. I’m in the States and I think the norm is to see people three monthly after frontline for two years. Then six monthly for three years, then yearly til ten years or indefinitely. Since I had a recurrence at eight months I haven’t been on this type of schedule. Why don’t you ask Ovacom what the norm is?
Hi Delia, you’ve read my mind, your norm is what I would have hoped for, that’s a good idea, I might give Ovacome a ring. Keep on ploughing through your treatment, and sending you loads of love and hugs. XX
This just feels so unfair. Sounds like you could do with finding another more supportive CNS. Chasing PALS sounds like a plan too. Maybe give the Ovacome support line a call? They may have some advice or give you the support you deserve.
Really hope you find a way to feel reassured & supported xx
Hi, Thank you for your kind reply, I’m going to look at all the above and get on to it in the next day or so, just building myself up to it. I think this is one of the few places you can feel supported and it’s reassuring to know others feel the same way, that perhaps your not a freak because you’re nervous when treatment comes to an end. Loads of love and luck. Dee xx
I was discharged after just over 4 years, as my oncologist felt I was doing well and didn't need to travel 40 miles each way just for a review. My GP has monitored my CA125 ever since and it's now 16 years since I completed treatment. If you're not getting the support you need from the hospital, go to your GP. They can and will support you. Sending hugs!
Hi, Wow that’s amazing, I hope you’re well. I haven’t had a face to face since March 2020, initially due to covid but I’m quite happy with phone calls, but I think I will go down the GP route, it seems the easiest. Thank you for your support. Loads of love and luck. Dee XX
Hi SopSinger, it's so good to hear how well you are doing. Do you mind me asking how frequently you have your CA125 blood tests at your GP surgery? Perhaps once every 3 months or maybe once every 6 months? Thank you
I'm in the states, I'm low Grade NED 1 year I alternate with my Onc & Gyno Onc every 3 months for a blood panel, CA125 and pelvic exam after treatment I returned to my GP see her every 6 months I'm told this will continue for 5 years typically its recommended that one should see the gyno/onc every 3 months for the first 2 years I was a bit nervous when she pushed me out to 6 I'm supposed to listen to my body call her office if anything feels amiss.
Hi, That’s great care that you’ve had so far, but the listen to your body bit is a bit useless, lots of us are here because our bodies didn’t shout loudly enough. I think that’s probably what’s wrong with me, feeling a bit nervous and abandoned but fingers crossed the GP will take over and do CA125 maybe yearly. Loads of love and luck. Dee XX
Hi, thank you for the information, how can care be so different across such a small country. I’d hoped for 10 years after the consultant who did the operation told me my cancer was very aggressive, I’m also BRCA 2 and have yearly breast scans. I’ll wait and see but with the help of the ladies on here I may have some ammunition for my next check up. Loads of love and luck. Dee XX
Seems a mixed bag but I thought five years was pretty much standard. I’m going to throw in another version as I am on five year follow up for the womb cancer (with the surgeon) and was told it’ll be ten years for the OC.
I’m at the Christie so don’t know if that’s just how they deal x
Hi, Haha it’s crazy how everything is so different, I saw the 2 surgeons who did my operation at 8 weeks and never seen either since, I saw my oncologist for 12 months and my CNS whom I’ve never met just phone calls ever since then, and I’m only up the road at Clatterbridge. Fingers crossed I can get CA125 done maybe through GP. Loads of love and luck. Dee XX
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