Low Grade Serous carcinoma

[DSM61]

Hello I have just joined and I am newly diagnosed with Low Grade Serous. I wanted to hear stories of people that have not had any reoccurence for long periods of time. I am looking for some positive feed back as I only know people have early recurrence. Thank you

[ZenaJ]

Hi there. My positive story is that 21st June 2013, I was diagnosed stage 3C. I have never had a recurrence but once had a blocked bowel due to scar tissue. I have lead an active life since being diagnosed and hope to continue to do so. I play badminton, go on holidays and do many other things. I'm not really overweight but eat more or less what I want but in saying that put a little effort into eating healthily sometimes.

There are a lot of positive stories but I think a lot of long term ladies leave the site. We all have to do what is best for us. I wish you all the very best for the future. Zena x

[DSM61 in reply to ZenaJ]

Thank you so much for your response. I also am 3c. They got all visible disease in debulking. I am having my 4th chemo out of 6 tomorrow. I had to have a temporary ileostomy bag which they will reverse 3 months after chemo. Then I will go on hormone blockers. Are you on any maintenance drugs? Thank you again. 🥰

[ZenaJ in reply to DSM61]

Sorry I'm answering all out of sequence. I'm not any any maintenance drugs and wasn't offered any. I'm not sure they were even available at the time. xx

[DSM61 in reply to ZenaJ]

Is yours low grade?

[ZenaJ in reply to DSM61]

I don't know what type I had. At the time I didn't even know there were different types and I can't find anything on my information that mentions it. I thought all grade 3C was the same. It had spread but I had a fantastic surgeon who I can't praise enough. xx

[DSM61 in reply to ZenaJ]

Zena you have made me feel so much better after hearing your story. I have only heard people talking about reoccurence with in the first year. I have had so much anxiety until I read you response. Thank you so much 🥰

[ZenaJ in reply to DSM61]

You are very welcome. I think most people on here are worried and need help. Unfortunately, because I was diagnosed so long ago I'm not up with all the new treatments. The aftercare treatment wasn't offered to me and because of this I'm not usually able to offer much in the way of help. All I can offer is hope and every year I add a note letting everyone know my test results so they can see there are ladies out here that are surviving and there are a lot of us.

All the very best to you. Zena xx

[bibs73]

facebook.com/groups/lgscsup...

this is a Facebook group specifically for low grade. It’s a great source of knowledge. I was diagnosed in 2016 and been on and off treatment since but I need to say that the treatment available now didn’t exist when I was diagnosed. There are lots of new treatments in the pipeline too.

facebook.com/CureOurOvarian...

This is a link to a charity that has been set up specifically for low grade. It’s a fantastic resource and has up to date information & resources.

[Levanah]

hello there.

I have LGSOC but I am one of those for whom it recurred. I’m an admin in the Facebook support group here facebook.com/groups/lgscsup... so if you do decide to join, there are plenty in there who didn’t recur. There is so much up to date info there about current treatments and management in your country. Jane Ludeman set up a charity (she’s from NZ) purely for Low Grade and we set the support group up to accompany that.

There are so many out there living well with this disease . I’m still living well since diagnosis in 2014. I am sure you’ll do well on the hormone blocker , as that is such an effective management for us.

It’s good to meet you on here . I also have a podcast with some of the stories being from ladies with Low Grade. You might find that useful too, anchor.fm/diane-evans-wood

Ovacome have a brilliant helpline should you need to chat to someone about how you’re doing. They also have good written resources online too if that is your preference.

All. The best to you .

Diane xxx

[Flower2011]

I’ve been clear since treatment. I was diagnosed December 2018 with stage 3C low grade OC. I had surgery and chemo and avastin. After 6 chemo/avastin I continued on Avastin every 3 weeks for about a year. I’ve just moved to 6 monthly blood tests from 3 monthly. I’ve been clear since treatment and don’t take any drug medication.

I do food and lifestyle medication- I changed my whole lifestyle- I now don’t drink, I exercise every day and I’m whole food vegan. (Whole food, not the vegan junk you can get in supermarkets). I follow a few people on line like Chris Wark and Nathan Crane for ideas on healthy lifestyles. They both interview long term thrivers. There are lots of others, just look on podcasts or YouTube. I’m in the UK and was treated at Christie’s in Manchester. Hope this helps.