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To think I ought to qualify for a BRCA test on the NHS?

(88 Posts)
Playnicelyforfiveminutes Mon 14-Dec-15 16:36:36

Hello smile
Am I being fair to expect an expensive breast cancer screening test because my mum died at 60 from 2 primary breast tumours, both different "types" of cancer?

I have seen a lady at the local hospital (I don't think she was a dr) who said I wouldn't qualify because it must be 2 female relatives. I am going to pay myself, but not everyone has £3000 spare. Am I being precious ?

VestalVirgin Mon 14-Dec-15 16:42:34

That's this gene test, right?

In my opinion, your mother should count. If it was just an aunt or distant cousin, it would be different, but 60 is very young, so it is reasonable to suspect it's genetic.

Do you know the causes of death of all your relatives? What about your grandmother and great-grandmother?

notafanofwinter Mon 14-Dec-15 16:47:12

YANBU. I'm surprised that losing you DM at 60 doesn't qualify you.
Are you sure there isn't any other family history?

Imustgodowntotheseaagain Mon 14-Dec-15 16:48:59

YANBU. i couldn't get one even though my mum died of ovarian cancer as she had two brothers so there weren't any other female cancers in the line.

Oddly my sister (lives in a different city) did quailfy. It might be worth asking someone else.

Sameshitdiffname Mon 14-Dec-15 16:54:49

I don't get screened for anything despite me having lynch syndrome they gave me the luxury of being screened for lynch syndrome after my parents complaining and then I think they only gave in due to them being doctors,but they don't screen me for any of the many possible cancers I have a very high chance of getting.

It's so daft but I suspect with BRCA it's due to the amount of people that would need testing if it went off one member of the family.

But YANBU

DamedifYouDo Mon 14-Dec-15 16:57:31

My great grandmother had breast cancer in her 60s, my grandmother (her daughter) died of ovarian cancer and her daughter (my aunt) had breast cancer in her 50s in one breast and 12 years later is now awaiting the result of a biopsy in the other breast following a call back after a routine mammogram. I have been told that I would only be given BRCA screening if my aunt tested positive - she has not agreed to be tested but I am trying to convince her!

firesidechat Mon 14-Dec-15 17:00:37

But one close relative doesn't make a family history of cancer or a pattern of cancer. The NHS has limited funds and there has to be a cut off somewhere.

My mum had cancer in her early 40's. No one else in the family has had breast cancer, so I'm in the same boat as you op.

steff13 Mon 14-Dec-15 17:01:14

I am in the US, and I had it earlier this year. My health insurance paid for it, but I had to have two relatives with cancer. My mom had breast cancer and my grandfather had colon cancer. They consider breast cancer and colon cancer to be genetically similar.

Are you sure it's 3000 pounds? If I had had to pay for my test out of pocket it would have been $410, which is 270 pounds.

HPsauciness Mon 14-Dec-15 17:02:06

I think genetic services are currently completely overwhelmed from what I understand.

To qualify to go forward, I think you have to have early onset (not sure when your mum started with breast cancer, but this is much earlier than 60, I think it's under 40) and several family members with either breast/ovarian and other cancers on one side of the family. CRUK do a good list of what types of family history would be alarming/trigger potential testing:

www.cancerresearchuk.org/about-cancer/type/breast-cancer/about/risks/definite-breast-cancer-risks#age

The problem is that lifetime risk of breast cancer is high in the population of women anyway, and so many many women who do not have BRCA will have first degree relatives who have sadly had or died of breast or ovarian cancer (CRUK say 8 out of 10 women with a first degree relative with BC won't get it themselves).

It is incredibly stressful if you feel you don't quite fit into the categoriessad sorry to hear about your mum as well.

LunchpackOfNotreDame Mon 14-Dec-15 17:04:28

Yabu. It's an expensive test and a one off family occurrence in a woman who is in the prime age group for it doesn't justify the test.

If your mum, nan, aunts and sisters all had it in their 30s and 40s then no yanbu

Rivercam Mon 14-Dec-15 17:04:56

One case of breast cancer doesn't suggest a familial link. It could have occurred randomly. I think,also,you are me likely,to be tested if you had relatives who had bc at a young age. Ie. Under 50.

Mikeytheturtle Mon 14-Dec-15 17:07:21

I asked to be tested. Saw a genetic counsellor and was deemed low risk so couldn't get tested. My mum was diagnosed at 47 with breast cancer, it returned when she was 60, now has spread so stage 4. My great grandmother had what we think was benign breast problems. No other history apart from an aunt with cervical cancer. I think that they want to see a few family members with it before they suspect the gene.

Fatherwishmas Mon 14-Dec-15 17:09:42

My Jarvis Breast Screening basically told me to go away and fill in loads of forms with information about relatives before evening being considered for the screening.

I have my DM, 2 x Grandmothers, Aunts and a Cousin with Breast Cancer.

I was told that the paperwork was to start the process and that even then it wouldn't be guaranteed that they would test.

Is it really £3k?! I was hoping that it would be about £100!

VestalVirgin Mon 14-Dec-15 17:09:45

The NHS has limited funds and there has to be a cut off somewhere.

True, but if it makes sense from a medical point of view, it would also save money.

Say, the test costs 3000. Treating someone for cancer is likely much more expensive. If one in hundred women whose mother died of breast cancer tests positive, then that could be more cost-efficient. At least if she does it like Angelina Jolie and has her breasts removed as prevention.

I've read that routine mammograms for everyone over 50 aren't efficient; you are more likely to get a false positive result than you'd be likely to die of cancer if you didn't get it.

Sameshitdiffname Mon 14-Dec-15 17:10:47

It's generally if your mum & nan had it or mum and her sister etc you'll be tested but they also offer the testing to those with the cancer too to see if there's a point in screening family members but obviously they can refuse.

Although my parents fought for my lynch syndrome testing I'm not sure if I'd rather have not know about it to be honest.

Funinthesun15 Mon 14-Dec-15 17:10:48

I don't know if I would qualify either even though my DGM died of breast cancer pretty 60 and my mum has also has it. They were the only women in the family as both only have male siblings.

I did however qualify for yearly mammograms at 40.

AnnieNoMouse Mon 14-Dec-15 17:11:24

My mother died of BC at 58. My understanding is that if there is a genetic link the disease will manifest itself much earlier. Relatively few cases of BC are genetic and the vast majority dx at 50 plus are not.
Therefore it's not unreasonable of a near bankrupt not to offer genetic testing to everyone who has had a relative with cancer - because it's too expensive and because it's not clinically necessary.
Having said that OP I do understand your worry. I've grown up thinking it's only a matter of time before I find a lump (even though I know that statistically my chances aren't significantly worse than average) and now I'm in my 50's have got myself into a state at the prospect of the 2 (clear) mammograms I've already had.
Just out of interest, what would you do with the info if you did have the test? I'm not sure, in fact im certain I wouldn't want preventative surgery. And if I didn't want that, would I want the knowledge of that genetic fault being a certainty, to be hanging over me?

LunchpackOfNotreDame Mon 14-Dec-15 17:11:30

But that's why they ask for the history to then see if it's worth pursuing with the test and also to ensure you know what the results could mean.

It's like ordering an MRI for someone who has nothing wrong with them.

longtimelurking Mon 14-Dec-15 17:17:07

Excessive and/or unnecessary tests do cause harm. Just because the test is available doesn't mean it is automatically a good idea to have it. There are reasons why these types of screening test have qualifying criteria; as others have already pointed out.

YABU and most likely about to waste 3k.

TooShyShyHushHush Mon 14-Dec-15 17:18:58

I was told that genetic testing costs the NHS too much money so they are trying to 'ration' it out. My mother has a genetic neurological condition that is life limiting. 2 of her siblings have it and their mother did too.

There is a 50% chance I will have it. They have identified around 30 markers they can look for to determine if you have it But the NHS will not test me 'blind' without first identifying my mothers type. They could look for the types they have found so far in case it is one of those but they won't. (they wouldn't need to look at all 30 markers because different types have slightly varying symptoms some of which can be ruled out in our case)

My mother refuses to have the blood test meaning we just have to wait and see if we will develop symptoms or not. The whole service is very overstretched it seems. On the one hand I think it's good that they don't test everyone for everything as it would be even more stretched. On the other hand, it's frustrating that they aren't more open to testing in cases like mine.

Sameshitdiffname Mon 14-Dec-15 17:22:20

Also where did you get 3k from its generally £150-£200 with two genetic counselling sessions?

Playnicelyforfiveminutes Mon 14-Dec-15 17:23:56

Thanks for the link and info, there is so much I didn't know about it here. Maybe I am being unreasonable based on those stats.

Yes I'm sure it's 3000. I live in Cambridgshire.
I was thinking I'd absolutely be "brave and strong" like Jolie, and have a mastectomy and replacement. I hadn't thought until I read this but I had CIN 3 aged 24, I wonder if that could be related ? I feel foolish now as I had implants about 5 years ago, which mean mammograms aren't very clear. (Not that I've had one)

I don't know my family at all, but I do know that the two grandmothers died 70+.

AnnieNoMouse Mon 14-Dec-15 17:24:07

HPsauce thank you for your informative post and link

Playnicelyforfiveminutes Mon 14-Dec-15 17:27:47

I got the price from the brochure by the company I was given at the appointment... 200£ is fantastic news... Very confused though.

Playnicelyforfiveminutes Mon 14-Dec-15 17:29:08

Maybe it's different prices for different diseases??

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