LGSOC

[Ingybabe71]

So i was diagnosed with lgsoc in oct and told its stage 4 . I have been told its quite rare and chemo wont work. Ive had cytroreductive surgery last week and am waiting on my follow up app and to be placed on hormone therapy to stop it growing. Is there anyone who is in the same position and can help explain things better as its still all very daunting and information seems very slim Ty

[TinaB1]

it’s not as rare as people think. Chemo might work. It’s not out of the possibility that it might help a lot. It helped for me. I wasn’t given long. I’m here 13 years since..

[Ingybabe71 in reply to TinaB1]

Hi Tina ty for reply ive been told due to size and where it has spread to that chemo def isnt an option for me

[Notage]

Low grade is classed as a rare cancer with only a few hundred people diagnosed each year with it. Ovacome have some good information on it: ovacome.org.uk/low-grade-bo... things are changing really quickly in terms of treatment options compared to a few years ago which is really positive. There are also a number of trials available including RAMP 301. If you haven't spoken to a low grade specialist it could be helpful in terms of considering treatment options and trials.x

[Ingybabe71 in reply to Notage]

Hi ty for reply. I live in N.Ireland which ive been told by my consultant only sees about 8-10 cases a year ive also looked into clinical trials and there is none avail here they are all in mainland Britian

[koffeekat99]

Hi.

This group is really supportive so you’ve already found a great group. Have you also connected with the LGOC specific groups? There’s a couple of groups on facebook with people from all over the world with LGOC. Don’t know how to attach a link to them but if you’re on FB you should find them in a search.

There is also a charity called lgsoc initiative. The founder was diagnosed with lgoc and wanted to raise awareness and funds for research. There’s a lot of info on the website lgsoc.org

Current thinking is that surgery followed by hormone therapy is one of the preferred treatment plans. Whether to use chemo or not is currently being researched in the US. I have lgoc and didnt have chemo. Over ten years since my diagnosis.

[Ingybabe71 in reply to koffeekat99]

Ty for reply. Wow 10 years that sounds so promising . I genuienly feel ive been given this diagnosis and everything has been a whirlwind with as little to none info on it ive joined the fb pages that ive found and the info seems very helpful. Its a case of getting my head around it and asking fore more support to understand it all i guess

[koffeekat99 in reply to Ingybabe71]

Sounds like a good plan to take some time to get your head around it.

The OC community is an amazingly supportive community. So reach out to the community whenever you need.

[Montydon]

Hi Ingybabe71

I was diagnosed with LGOC at stage 4 in 2017 and initially had chemo in the form of Carboplatin and Taxol which initially stabilised it. Due to its rarity and general lack of effective treatments I then had the opportunity to take part in the initial FRAME trial (precurser to RAMP) at the Royal Marsden Hospital in Sutton under Dr Susanah Banergee.

This involved a combination of 2 drugs taken over 4 years. This kept things stable until recently when I had to stop the trial due to bowel issues. I am now on the hormone blocker Letrazole but experiencing a recent recurrence. It is worth investigating a new range of drugs that have been used in clinical trials called MEK inhibitors - one that i understand is now available under the NHS is Trametanib. Not sure if available in Ireland. I know Dr Banergee presented results of the RAMP trial in Dublin recently.

I wish you all the best going forward and i am still here after 7 years if that helps!

[Ingybabe71 in reply to Montydon]

Ty so much for reply. Im glad to hear ur doing ok. I will ask my consultant what is available over here hopefully i get positive outlook now ive had my op. I know i have lots of disease on my bowel but doctors said they are like grains of sand so decided against removing for now. It has also spread to behind my heart and neck but hopefully the hormone therapy stops it from growing x

[CBeauty]

hello there, yes I have been diagnosed with the same thing. At stage 3C. Two years ago now. It sounds like you’re in great hands and your doctors are following a very specific protocol.

There is a Facebook page called Low grade serous ovarian peer support - and I encourage you to join it. It is women all over the world with the same diagnosis and we compare notes, and it has been enormously helpful to me.

I see you are in the UK - there are lots of women from there in the FB group

[Ingybabe71 in reply to CBeauty]

Ty ive joined the group its just all very daunting esp when i read about ladies getting chemo and am being told chemo isnt an option its so confusing x

[CBeauty in reply to Ingybabe71]

Even though I felt I was getting the best possible care, I did get a second opinion. I’m so glad I did NOT BECAUSE MY THERAPY CHANGED, BUT IT JUST GAVE ME A LOT OF CONFIDENCE GOING FORWARD. I HIGHLY RECOMMEND IT. IN THE USA AND IT’S PART OF MY INSURANCE COVERAGE.

[CBeauty]

sorry about all that uppercase I didn’t mean to yell at you!

[Ingybabe71 in reply to CBeauty]

Lol i wanna uppercase sometimes 🤣🤣 i hope ur doing well and alls good xxx