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

[Playnicelyforfiveminutes]

Hello :)
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 ?

I had thyroid cancer at 31. large 4cm requiring 2 operations and radiodine treatment.
Had some lymph nodes removed for analysis at 35 as all nodes under one arm were enlarged. They suspected breast cancer or lymphoma. Given all clear for cancer but they have no idea why the nodes are like that.

Mum diagnosed with 2 types of invasive grade 2 breast cancers at 58 through screening programme. (Just after I had the node operation ) Had spread to main lymph node so had total node removal as well as 2 surgeries to remove a tumor almost 4cm in size. Then chemo and radiation. Due to tumor location they could not get proper margin of healthy tissue due to proximity to chest wall. But they got all the cancer part.

If i lived in America i'd be given annual mamograms/ultrasound imaging due to having thyroid cancer. And that's without having a mum with breast cancer. There is a proven link between thyroid and breast cancer so that's why I'd be offered screening.

I asked about genetic screening for breast cancer and i was turned down as I had to have another relative with breast cancer.

I do think there is a faulty gene in my family somewere as on my mums side of the family my nana and all her brothers/sisters, think there was 9 of them died of cancer, either lung,bowel or liver at various ages. We don't know about the generation before. Yet my dads side there is no trace of any cancer whatsoever. They all live to over 90 and die of natural causes.

i am seriously considering going private.

Think would need more family history: cancer at 60 not that rare, and some are normal consequence of ageing.

Had 2 siblings with a type of cancer called pheochromocytoma before I was offered testing. Now I know my lifetime risk is 90-95%. Grandmother died from it, now various cases with degrees of severity. Annual scans, other tests.

My understanding is that testing occurs if first degree relatives have it at relatively young age. Not sure about DIY testing. Must be looking for specific alteration in the gene.

My mum died at 54

War baby who never knew her father, i could have masses of dead female relatives on my grandfathers side but i will never know

Stokes I'm 25 so they said there's no reason to yet, but my sister is 31 with colorectal cancer along with other lynch syndrome linked cancers!

There is a huge history of breast cancer on both sides of my family - my mum had it at 52 and had a single mastectomy,her sister had it at 56 and had a double mastectomy,their cousin has had it 3 times in 10 years and now had a double mastectomy and my dads sister died of it about 10 years ago. However,i dont qualify for testing because only certain types of breast cancer are hereditory,and no one has had the heriditory types. I've also had a borderline ovarian cyst removed,these are very rare and are pretty much the stage before something is classed as pre-cancerous. And I still dont qualify! They are researching all the time and finding more cancers linked to BRACA1,i'm on a list to be tested should any of the cancers my family members had be linked to it but sorry,if I cant get tested with MY history i'm not surprised you cant be with yours.

In the future I may consider private genetic testing,though at this stage i'm not sure I want to know...Been through this already as people in my family have a tendency to be perfectly healthy until they drop dead unexpectedly,when my dad died they thought there may be evidence of a genetic heart defect and testing my brother and I was discussed,we both refused because if we have it theres nothing that can be done to treat it,i'll just be living with this massive thing hanging over me.

Playnicely First question have you taken out life insurance? If you have even requested testing it may be too late to do so but do not have a test without having the insurance in place, and being honest about family history. Second is to ask yourself what would you do if you had a BRCA mutation? Specifically if say you were told you had a slightly above average, say 15% chance cancer would you have bilateral mastectomy? Or to be a bit silly: what if you were told your risk of breast cancer is 21.642% and of ovarian 31.479%? Third, I am sorry your mother is dead but was she tested for BRCA mutations, and if so is any sample left? This last because there are many mutations, to test for all is far more expensive than to exclude a specific mutation. And I think Tango and candy have given up to date info but when BRCA was discovered (now BRCA1) it was about 1% of familial breast cancers and is still the commonest but BRCA2 is less common but more dangerous and we have already had a geneticist here so will not embarrass myself further by showing my ignorance but there are new mutations being discovered daily. I am seriously troubled by routine mammography, both the risk of the radiation causing cancer and the unnecessary surgery resulting from the findings. I am male, have no intention of PSA (prostate) testing and have refused to have my cholesterol checked, even though (as a retired surgeon) I know my GP gets a bonus for getting me to be tested. "Tests" are worth it if you are an insurer but for the patient they are double edged swords.

Finally, last question and putting on flak jacket, do you smoke?

Yes, really surprises me that people don't believe a genetic counsellor about familial risk and want an expensive unnecessary test' just to be sure' and yet are happy to be obese or smoke ( I don't mean you OP, this is just people I have met In RL who think there is some NHS conspiracy not to test them even though it's scientifically pointless)

Many years ago (before the BRCA gene had been isolated) because my mother had breast cancer and so did one grandmother, an aunt and a cousin of my mum's.

We went through my family history and ages of diagnosis and it turned out my chance of developing breast cancer (mathematically) was the same as most other women.

We looked at other factors such as smoking and drinking.

Isn't BRCA linked to cancer in younger women?

Isn't BRCA linked to cancer in younger women?
Yes. The family pedigrees are astonishing, particularly those used in the original gene identification research war of scientists

If it helps anyone, I am an academic genetics person who works in medical genetic research in a unit that performs extensive genetic testing for BRCA across a whole region.

I have a Mum and a grandmother who have both had breast cancer. I have never considered myself a risk for BRCA mutation. This is mostly because both were post-menopausal when diagnosed and that just isn't BRCA.

both were post-menopausal when diagnosed and that just isn't BRCA
For clarity, this is quite a conversational observation. Of course, it could be BRCA, but it doesn't fit the BRCA breast cancer pattern so doesn't flag as a potential screen for me.

That's a thought Maid - my mum was only 58 when she died of BC but she was post-menopausal. I'd forgotten that.

However, I am nosy and currently have more money than sense, so I have ordered a 23andme kit. I will come back and update you all on the degree of informativeness of its output I did my PhD in Biochemistry and am now a medical writer so should be OK with interpretation (I hope)!