Request brca testing - polyps

[jellibum]

Hi
I've been suffering from heavy periods and sharp stabbing pains for 6 months - had an ultrasound Thursday evening and was contacted 1st thing Friday morning to say I have been referred to a specialist clinic to investigate polyps, cyst and ademynosis. My mum got breast cancer at 46 (I’m 45) I have been refused brca testing on 2 occasions - do you think I should be pushing for this, anyone else been in a similar situation. Obviously very worried how quickly I was contacted - mum of 3 girls. Thanks for reading x

Is your mum the only close family member to have had breast (or ovarian) cancer? If yes, it doesn’t sound like you would be classed as high risk due to family history. Are there other reasons why you’re so worried about having the BRCA gene? Your only option if you want to be tested will be to pay for it privately.

My mum had and died from ovarian cancer. Her cousin had and died from breast cancer. Dr said no risk of it being genetic.
My mum pushed for referral. Testing confirmed no gene.
Years later I developed alot of cysts on my ovaries. Gynae removed them due to 'family history'

i’m about to apply for BRCA testing too so this is interesting to read. Like you, my only connection is my mum who got cancer a few years older than I am now. I’d be really disappointed too if I wasn’t offered the testing so yes I think you should push for it. I would.
What do you need to qualify? Mum and a sister or what?

According to the NHS website here
Predictive genetic tests for cancer risk genes - NHS

You may be eligible for this NHS test if the faulty gene has already been identified in one of your relatives, or if there is a strong family history of cancer in your family.

You can also have NHS genetic testing for faulty BRCA genes if you’re 18 years or older and have 1 or more Jewish grandparent. This is because having Jewish ancestry increases your risk of having a faulty BRCA gene.

Morning x thanks for your replies- just my mum with breast cancer but grandmother had bowel cancer and my dad has just had treatment for prostate cancer. Can’t help but think the worst. I think I’ll see if the NHS will consider testing me but if not will look into private - does anyone have an idea on costs? How it’s done - and also if it comes back positive will the NHS accept a private report? Thank you x

Sorry @jellibum but you won’t qualify under the NHS so if you’ll have to be tested privately if you still want to be tested. It costs upwards of £1k. To be honest, it doesn’t sound like you have an increased risk from what you’ve written here but if getting tested gives you more reassurance and you can afford it, that’s up to you.

Back again. Randox do the tests for only £500ish:

https://randoxhealth.com/en-GB/in-clinic/genetic-breast-ovarian-cancer-risk

My ovaries were moved privately.
Unless there is a defo genetic indication the nhs won't cover testing or preventative treatment.

There's not any genetic link there, although I can understand why you'd be anxious about cancer generally. Why do you want genetic testing?

I would get through your current referral and testing before throwing money at genetic testing. If you do want to pay for genetic testing then make sure it comes with decent genetic counselling.

Hi OP, just to say I'm in a similar position to you re testing. My mum died of breast cancer when I was 18 - she was first diagnosed age 40 and then had an unrelated second breast cancer aged 53. My grandpa and aunt died of bowel cancer; my other aunt has had lung cancer (but survived). I've been told I don't qualify because my mum died before BRCA testing was available, so there's no proof she had the gene. I've gone to great lengths to retrieve my mum's notes from her original diagnosis, but can't get any GP to refer me for testing. My brother, in contrast, has been having enhanced bowl cancer screening for the past decade as he's deemed to be high risk! It's all infuriating.

I have looked into private testing, but I couldn't figure out whether this would make me eligible for screening on the NHS if I'm positive or not.

The genetic condition that makes bowel cancer more likely is called Lynch syndrome (something I'm currently being tested for) , which as far s I'm aware is completely unrelated to BRCA and breast cancer.

If your family history has led to your brother getting enhanced screening for bowel cancer, as his sibling why are you not ?

He was told that they are linked, and that in any case having that many close relatives being diagnosed relatively young means a higher risk of all cancers. But the inconsistency of it is really annoying - it seems to just depend on which NHS Trust you're part of.