Hello. Low grade Serous

[GoldieH]

Hi everyone. I was diagnosed with low grade serous ovarian cancer in Sept 22, I’ve had 2 massive ops and chemo and now take Letrozole. My recent scans have been clear, which is the best news. I haven’t really reached out to many support groups but feel I need to as I feel pretty isolated with my experience. I also wondered for those of us with advanced ovarian cancer (I’m stage 4) - how long did people get 3 monthly ct scans for? My consultant had suggested we move to 6 monthly scans now and bloods every 3 month. Thanks so much. Laura x

[Artgreen]

I’m stage 3a LGSOC and here in the uk you don’t have scans unless you have symptoms to avoid unnecessary radiation. I’ve only had 2 since surgery 5 years ago. Bloods have remained stable. So no visible disease.

[GoldieH in reply to Artgreen]

Thanks for this information that’s really helpful and your story gives me hope !

[GoldieH]

Hello from England and thanks for your reply. It is helpful. Yes my consultant said to call if symptoms ! Vague is the right word! X

[Jennifer1959]

Hello Goldie - I am just about to move into 'review' and monitoring after surgery and chemo and I understand the appointment will be to review any new symptoms and hopefully bloods - it isn't until January so I am a bit unsure of things. I will need to contact my MacMillan nurse to find out but I understand there are no CT scans unless I have any symptoms but as everyone else has said - the symptoms are really vague in any event. Also - I have had lots of odd sensations since my radical hysterectomy (which I understand is perfectly normal as your body returns to some sort of normal!). Take care x

[GoldieH]

hello Jennifer

Thanks for your reply and nice to meet you. Do you have low grade cancer too? I had a radical hysterectomy in Sept 22 and had lots of odd sensations for about nine months, still do at times! I feel much better about not having 3 monthly scans now. I hope you feel ok after chemo too. I finished Chemo end of March and definitely still feel I’m recovering. Take care x

[Owenmeany]

Hi Laura

I’m low grade serous 3b, I was diagnosed in June 2020 and had debulking surgery in August 2020, the recovery was long and tough due to complications. I had several CT scans during this time. I followed up with 6 rounds of carboplatin and was given NED in April 21. I have been on letrozole ever since. I was concerned that there were no follow up scans unless there were any symptoms, I didn’t really have any symptoms before diagnosis so found this worrying. I have had one ct scan since because a I had a few niggling symptoms but luckily there was nothing to see. I have 6 monthly CA125 blood tests (although it’s not a reliable marker for lgoc) but I find it reassuring. I,m now on annual reviews with oncology and as time has gone by I worry less about small niggles. I wish you well in your recovery and hope you can be reassured by all the replies you have received.

Linda xx (uk)

[GoldieH in reply to Owenmeany]

Hi Linda

Thank you for your reply. It’s very reassuring to hear your story and the story of others. I’m finding the worrying the hardest part and I hope with time that gets less. I’m also on Letrozole. I’m still on 3 monthly reviews / CA125 but as you say it’s not always an accurate indicator - the highest mine has been before treatment was 75. Hope you have a good day and you continue to be well!

Laura x

[Owenmeany in reply to GoldieH]

Thank you, the highest mine went was 78. Interestingly my gp did a CA125 test for me in September and looking at the results on my nhs app it appears that the way it’s measured has changed. Mine has been around 20-22 but is now 15. I’m going to have a chat with the gp about it because I’d like to understand the reason for the new method. Best wishes x

[GoldieH in reply to Owenmeany]

That’s interesting. Maybe you count share what your GP advises re the CA125

[Owenmeany in reply to GoldieH]

I definitely will 😀

[Artgreen in reply to Owenmeany]

That’s interesting Linda, five years on and I’m still on 3 monthly reviews with bloods and will move to 6 monthly next year I believe. I assumed ( incorrectly obvs) that this was the standard of care for the UK with LGSOC.

Hope things continue to go well for you

Best wishes

Alex

[Owenmeany in reply to Artgreen]

Hi Alex, that is interesting, I had to ask to stay on six monthly reviews originally because they wanted to move to annual almost as soon as I was declared NED. I’m in Bristol, where are you? X

[Artgreen in reply to Owenmeany]

That’s really strange! I’m only down the road in Swindon! My first onc wouldn’t use the term NED and he’d only say No visible disease implying there’s probably invisible disease but we should treat it as a chronic illness.

I’ve had three consultants one of which I finally get to meet after two years in December, so not sure what terminology she uses. The last one said “remission “ which the first one didn’t use either. It’s not very standardised is it?

Best wishes

Alex

[Owenmeany in reply to Artgreen]

It’s all a bit random 😀I’m lucky that I’ve had the same consultant all the way through. They always use NED, never ‘remission’ I’d never heard this term before I was diagnosed but I think like you said , the disease is currently inactive but always there. I hope you’ve your to keep well x

[Coco32]

Hi, I am also in the UK and was diagnosed with LGSOC stage 3c back in March 2022, had the surgery and then on Tamoxifen since. I have only ever had 2 CT scans, one before surgery and one after. As others say, there is a risk in doing these, so they will only do more if I have symptoms. I was initially on 3 month reviews with blood test, CA. 125 has been decreasing with each test, so I am now on 4 month reviews and I’m happy with that.

For at least a year after surgery I had strange aches & pains on and off, which raised alarm bells. But my Oncologist was reassuring when she said I only need to get in touch if these persist for more than two weeks. That really helped make it clear in my mind. Fingers crossed for you. Xx

[Saintgermain]

Hi Goldie I have low grade endometroid estrogen positive as the CA125 is a good indicator for me I'm stage 3B a lot of stuff is moved around during the hysterectomy coupled with scar tissue forming as I've insisted a CT a couple of times you have to be your on advocate I'm about to go on Letrozole. Hugs from Chicago

[GoldieH in reply to Saintgermain]

Hi Saintgermain. Good to hear from you. Yes we all definitely need to advocate for ourselves. I wish you all the best on Letrozole. I found my side affects (mainly joint pain / stiffness / tiredness) really improved after a couple of months and swimming really helped with stiffness too. Best wishes from the UK x