Lynch’s syndrome

[2016Mags]

Hi, my name is Mags and I have serous grade ovarian cancer stage 3 c (could be stage 4 now) since 2016. With three surgeries since (last one not so successful) and three rounds of chemotherapy, presently on maintenance Avastin.

Does anybody know anything about Lynch’s syndrome. I tested positive for this with the MSH2 gene and was hopeful when it was also in biopsies but I didn’t qualify for immunotherapy because the gene was working not broken. Now I’ve had more testing with a Foundation 1 Test and it looks like the gene is questionable again.

if anybody has any information on this and on immunotherapy treatment I’d appreciate your feedback.

Thank you for all the advice I have already received from this forum, you are all so kind and helpful to one another…I am in Ireland xx

[delia2]

Hi. All I can say is that I just heard a podcast in which they said people with Lynch Syndrome do well on immunotherapy whereas most OC patients do not. I would push for it or a trial using it. I hope you have success. Xx

[2016Mags in reply to delia2]

Many thanks Delia for your reply. The doctors refused immunotherapy because the MSH2 gene is not broken but I am certainly going to try to push for it…I have an appointment coming up in the next month to see an Oncologist/Geneticist…

Best of luck to you xx

[Riverflo]

Hi Mags,Sorry I can't offer advice as I haven't heard of Lynch's syndrome. But I just wanted to ask how you came to be tested for it? I was only tested for the Brca gene and didn't know about other tests or that testing could open up different treatment options.

I hope you find a way to be offered immunotherapy.

Best wishes,

Martine xx

[2016Mags in reply to Riverflo]

Hi Martine, I went to see an Oncologist/Geneticist and he did a genetic test and I l also did Foundation 1Tests, both in 2019 and recently which I had to pay for myself but it is a lot more detailed, which was organised through my Oncologist. Best of luck with your treatment…Mags xx

[Riverflo in reply to 2016Mags]

Thanks Mags, I'll ask my oncologist about private testing. X

[lesleysage]

Hello Mags, my suggestion is to talk with Ovacome Support team or Ovarian Cancer Action...or maybe first look at the Ovacome website for their information on Lynch Syndrome and ovarian cancer:-

ovacome.org.uk/pages/search...

Warm wishes, L x

[2016Mags in reply to lesleysage]

will do Lesley, many thanks xx

[SopSinger]

I have Lynch syndrome, MSH6 mutation. It is now clear that immunotherapy works much better for Lynchies than conventional chemo, so definitely worth pursuing. There is a wonderful and very supportive group on Facebook (Lynch Syndrome UK), so you'd be very welcome to come and join us there. There is a LS patient conference in Birmingham on 18th March and you'd be very welcome there too. We always have experts speaking, presenting the latest research, in lay friendly format, and it's very useful.

[2016Mags in reply to SopSinger]

Many thanks for your reply, genetic testing found MSH2 in my body and also in my tumour but they said it was not the cause of my cancer as it was a working gene not broken, so I do not qualify for immunotherapy here in Ireland, maybe it’s different in the U.K….I have had further testing and MSH2 came up as being questionable so I am going to see another Oncologist/Geneticist in the next month to ask her to have a look at the latest findings. Thank you for the information also on the Facebook group xxx

[IBouarroudj]

Hi Mags, I'm in Ireland also. I had genetic testing but am not carrier. Apparently not uncommon in Ireland though. Hope your tx is going well xx