Latest appointment - possible genetic sequencing - My Ovacome

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Latest appointment - possible genetic sequencing

Di16 profile image
Di16
8 Replies

I had my latest oncology telephone appointment on Tuesday. Letrozole, which had kept me stable for 2 years, stopped working earlier this year, & I've been taking Megace since August. There's little change on my latest scan, so I'm continuing to take it for now. After some discussion on my future, I'm going to Addenbrookes next week to see a dr about genetic sequencing, to see if that shows up any options for future treatment. Apparently if they go ahead with it, I need to sign a form giving them permission to take a sample from a tumour from my last operation to test. If that is not in good enough condition, I would need a biopsy done from a present tumour, which I hope won't be needed. Has anyone else on here had genetic sequencing, or know anything about it? Another suggestion was the ATRIUM trial, a stage 1 trial of an atr inhibitor with Gemcitamin chemo. Is anyone on this? Di

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Di16
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Broader profile image
Broader

All sound very hopeful for you, I’m afraid I haven’t heard of either of them but wish you lots of luck with it when you need itChristine x

Madmarilyn profile image
Madmarilyn

I recently had a CARIS test, which cost nearly £5k but came up with all the AI drugs (Letrozole, , Anastrozole, Exemestane etc) but also suggested Nivolumab in my specific case. I think you have GCT Di, as do I, mine is supposedly ER weak and PR strong, don't know how that relates to yours. Apparently there are various tests, and CARIS seems to test the most genes, hope that helps. I had some basic genetic testing a couple of years ago - it told them I didn't have FOXL2 , as I am Juvenild GCT, and said something about SMARCA4 if I remember rightly. Don't think either affected my treatment, but the CARIS test has thrown up the useful info about immunotherapy being a possible drug for me in the future. Shame it's not available for me on the NHS yet!

Di16 profile image
Di16 in reply toMadmarilyn

Yes, I do have GCT too. I haven't heard of the CARIS test, but I'm glad it was useful for you. I have had all the AIs over the years. Letrozole was the most successful, kept my cancer stable for 2 years. Di

Lyndy profile image
Lyndy

I had my genetic test done at Addenbrookes and spoke to one of the geneticists there about my results... they were awesome and really informative (I was BRCA 1). Anything that gives you more options has to be worth a go? xx

Di16 profile image
Di16 in reply toLyndy

Thanks for your reply Lyndy, I'm glad it was useful for you.

thomas62 profile image
thomas62

Hi Lyndy,Are you low grade serous oc? What does GCT mean? Also glad you found genetic testing useful. Best wishes. Gwen (a low grader) x

delia2 profile image
delia2 in reply tothomas62

Granulosa cell tumor—I looked it up

Di16 profile image
Di16 in reply tothomas62

Granulosa cell tumour, a rare type of oc , usually caused by a mutation of the FOXL2 gene, & apparently not inked with brca. It tends to behave differently from other types of oc I believe

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