Genetic Counselling advice ?

[54isanopendoor]

My GP referred me to this service.
I'd some worries back when I had repeated IVF, 20 years ago, as there were reports being done that showed a higher incidence of ovarian cancer in women who had had repeated IVF especially if they'd had OHSS which I did. Recent studies have not shown this very high incidence so are less alarming.

I only spoke to my GP recently. My Mother died of ovarian cancer in May. She was 82. But before she died she told me that her sisters both had had ovarian / breast cancer (the family is very fractured so I'd not known this) & that her Aunts had both died of 'women's cancers'. She was quite ill so I couldnt find out any more info at that time. I do not know who my Father is so I cant say that side.

I had my initial appointment today online. The Counsellor said that I dont have enough family information for them to offer more input. I can see that the info I have is fairly sketchy but surely its not that uncommon for a person not to have great details (ie if you have been adopted or in care?). I felt quite dismissed.

I appreciate that I will be 'extra conscious' of this due to my Mother's passing but I was hoping to at least discuss whether I could be tested for the BRCA gene rather than just told 'not enough info' ?

I had genetic testing but not in the UK. I was diagnosed with breast cancer at 38 and they did genetic testing after I requested it. My family history is also fairly sketchy. It would depend I guess when your aunts got cancer. I was told below 45 you would get tested.

I'm Chek2 with BRCA2 VUS (variant of uncertain significance ).

The NHS tested my parents for Chek2 but not BRCA. My father's side of the family has extremely high rate of cancer but he wasn't the one with the genetic mutation. It was my mother and there's not much known history on her side.

@Mercurial123
thank you for your reply which was really interesting.
I suppose that they have 'done what they can' I was just surprised that 'no family background' was dismissed quite so baldly. There must be a number of people who dont' know who their father is / have been adopted / been in case so cannot supply such detailed medical history. I appreciate that if you need to have a previous history of cancer for screening that is a different matter.
Thank you - I hope you keep well xxx

I agree if you are adopted or have a dysfunctional family it's going to be impossible and you're at a huge disadvantage. I guess it's all down to cost. I had a preventative hysterectomy and double mastectomy to help prevent future recurrence.

I'm sorry they wouldn't test you.

My mother and all of her siblings (7 of them in total) have had cancer of some form or another. Both my mother and aunt had breast cancer (survived).
Several years ago, a consultant I'd met with told me that they were less inclined to test me because I didn't have a sibling with a cancer history.
Since then, my brother died of pancreatic cancer and did have the gene(s) for breast/pancreatic/glioblastoma... all three of those cancers have hit my family hard.
I still haven't been tested but now it's more because, well, maybe at 50 and having lost so many family members, I just focus on screening and proactively keeping an eye on things. I feel a bit helpless. Maybe I'm just too damn scared to test. I'm not sure.
You could pay privately, I imagine. I've not looked into it myself but I assume that's an option for you, OP.

You can do a private test for only US$ 250 with Invitae, which is one of the main lab in the world.
If you don't have a referral, you need to add $125 for a consultation pre and post result with one of the genetic counsellor. www.invitae.com/en/providers/test-catalog/test-50002

You can ask for more info by email

International inquiries
Email [email protected] at any time

The NHS is probably discarding this possibility because of your mother's age. However I do not agree with this approach.

The test is affordable and reliant since Invitae is used by hospitals everywhere in the world.

@TheVanguardSix I'm so sorry that Cancer has had such an impact on your family. That's very hard. I can entirely understand why you are not sure you'd want a test in the circumstances.

@MatchaTea Thank you for the information & the link you have provided. That is very interesting indeed.

Sorry it's taken me a few days to reply to your helpful posts. I've just had a colonoscopy after a positive test at the scottish bowel cancer screening center but fortunately it appears to be negative so that's good news anyway.