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Large family history but "not enough points"

6 REPLIES 6
Helen
Member

Re: Large family history but "not enough points"

Hi,

It sounds like you're being fobbed off; dig your heals in!  Have you looked at other cancers in your family?  Ovarian, prostate, stomach, pancreatic and melanoma can all be linked to BRCA mutations.  At the very least genetics should draw up a family tree and identify who had cancer and what type.  I have a BRCA 2 mutation and all of the cancers mentioned above have been found in family members, only myself and one other relative with breast cancer.

Best wishes

Carrot
Member

Re: Large family history but "not enough points"

My goodness, how many points do they want?  That sounds like a lot of points to me, that you have in the family.

 

When I was with the genetics counsellor I had told them about my grandmother who died aged 35 of breast cancer - it then missed the next generation which only consisted of males and then I got breast cancer at 44, which has now metastasized.  A friend who worked in bc research told me he was almost 100% sure I would be BRCA and to get a test.  So there I was in the room, being told I needed three members of the family, so I came up with the two sisters of my great grandmother who died young of bc (in Vienna, no records available to check).  I got the test, and it was positive, so I feel justified in sticking to my guns on that.  I guess it was what my friend said that made me confident that it would be a positive.  

 

This was in a North Yorkshire hospital.  They're pretty broke. They were looking for three members of the family with breast cancer in order to do the test.  I have also been told in a UK hospital that it can't come through the male line.  That's patently absolutely untrue - mine Has come through the male line - my dad - and in the US they know this.  No cancer in my mum's side of the family.

 

It will be a false economy for your area's NHS if they won't test you and you are positive. . .

 

Good luck with getting a test..

 

Carrot

MKK
Member

Re: Large family history but "not enough points"

I was told that they could only count "one side" for points.  My paternal side has a large lung cancer history (including my father), but while he had 12 male siblings, he only had one female sibling.  The only breast cancer I know of on my paternal side was one male cousin.

 

I spoke to the helpline, and unfortunately they agree that my history is just unfortunate and as my GP says, I don't score enough points as all the women were in their 40's when diagnosed.

 

It still seems ridiculous to me. The 'reason' being that as my grandmother didn't have breastcancer it can't be a gene.. but, the gene only increases your risk substationally, it doesn't cause breast cancer in 100% of people.

 

Ho hum.

skinnyminx
Member

Re: Large family history but "not enough points"

Hi MKK,

 

Sorry if I'm teaching you to suck eggs but has your paternal side also been taken into consideration?

Rattles
Member

Re: Large family history but "not enough points"

Hi MKK, I can't answer your question, but you can ask for can explanation of the points offered and go back and discuss with your GP. There was a thread with the criteria, and the Helpline might be able to assist you? How old was your mum at diagnosis and could she be tested? Are you being offered screening? Rattles

Jo_BCC
Member

Re: Large family history but "not enough points"

Hi and welcome to the BCC discussion forums. I am sure your fellow forum users will be along soon to help.  In the meantime could I suggest you ring our helpline and have a chat with the staff there.  Calls are free 0808 800 6000 lines open weekdays 9-5 and Saturdays 10-2.

 

Take care,

Jo, Moderator

MKK
Member

Large family history but "not enough points"

I've been trying to get referred to BRCA testing, but my local breast clinic say I don't have enough points to be able to have it.

 

Basically - on my maternal side..

 

My grandmothers 3 sisters all had breast cancer in their 40's or 50's.  My Grandmother DIDN'T

My mother did, but her sister didn't.

My only female cousin was diagnosed in the last year.  I don't have any sisters.

 

Because neither my grandmother nor aunt have had breast cancer I don't qualify.  Even though they were the only 2 females in 3 generations that haven't!

 

Has anyone had any success appealing the decision?