breast cancer

hello my name is kim yesterday i went for the gene testing done as my mums dad 3 sisters whch would make them my great aunts had died of breast cancer we dont no much about the family history as we never new my drandad and hs sistrs up until a year after my drandad died but my mum made me go annd ask my gp to make me get tested and when i went the wrote half my family tree out as much as i could tell them but the nurse insisted i didnt need or werent up to there satifatcion of testing me for breast cancer as she told me that it wre to fair out my family to even get the gene im just worried as that she could be wround the booklet i have got says up to 7 generation and that it could be my great aunts can someone please hlp me as i think i have a great risk and should get tested x

Hi kimberley

Welcome to the BCC discussion forums where I am sure you will get lots of good, honest support from the many informed users of this site.

I have put for you below BCC’s publication regarding breast cancer in families and hope you find this helpful to read. If you would like to talk to someone in person then our helpline team are just a free phone call away and will be only too happy to talk to you. Calls are free, 0808 800 6000 lines open Mon-Fri 9-5 and Sat 10-2.

www2.breastcancercare.org.uk/publications/worried-about-breast-cancer/breast-cancer-families-bcc32

Take care,

Jo, Moderator

Hi
I have a faulty BRCA1 gene passed to me by my dad and brought to light by 2 of his sisters who had ovarian cancer, I unfortunately have had treatment for breast cancer but am doing well. If its your mums side of the family has she been tested? If she hasn’t got a faulty gene then there is no way you can have it and they should test her as its exactly the same situation as me.
Hope this helps.
Vicky xx

hi kimberly

normally they can only test somebody in the family who has had cancer first… if they then find a mutation they can offer it to other family members like yourself who havent had it.

and although the nice guidelines are offering tsting to non affected indicviduals you have to fit into a specific criteria… usually the furthest relatives tey look at ar grand parents but not their brothers and sisters unless there are more affected people related closer to you who are affected as well.

these are the new NICE guidelines… nice.org.uk/nicemedia/live/14188/64202/64202.pdf
“Offer genetic testing in specialist genetic clinics to a person with no personal history of
breast or ovarian cancer if their combined BRCA1 and BRCA2 mutation carrier probability
is 10% or more and an affected relative is unavailable for testing”

to fit this 10% risk of being a mutation carrier at least your sister, mum, dads sister or dads mum would have to have breast cancer or ovarian cancer… im not sure what your booklet is but the is the upto date guidance for England and Wales.

this means with a family history like your your chance of getting breast cancer is the same as the population risk… ie you have the same cha nce of bc as joanne bloggs down the road.

if your mum has had bc then as Vicky has said the first step would be for your mum to get tested if she was assessed at being a high enough risk.

its not uncommon to get some clusters of bc even when its not genetic… random can be just 1 but could also be 3… also if they were over 60 then its also less likely to be genetic.

take care

Lulu

Lulu
Does having your mother or sister diagnosed below age 50 now mean you would fit the 10% risk category you mention and may therefore be eligible for brca testing?
sorry for commenting in someone else’s thread but it seemed silly tomstart a new one just to ask this question :slight_smile:
Ellie

Hi Ellie… No problem using this thread x

any way the answer is generally no… as it would depend on their age, type of cancer and if it was in both breasts… I think 10% equates to 16 or more on the evans score… Its at the bottom of this protocol…

so if both in their 30s there would be a score of 16, if 1 in their 20s and other in 40s then this would be 17, but if both in 40s score would be 12 and wouldnt fit…

if it was one relative with TNBC in their 30s they would fit the NICE criteria, TNBC in their 50s would fit the ICR criteria… But not everybody uses the ICR criteria.

if they cancer in both breast in 20s or 30s they would fit but if both were in 40s or once in 30s one in 40s they wouldnt.
http://www.icr.ac.uk/research/team\_leaders/Rahman\_Nazneen/Rahman\_Nazneen\_Protocols/Protocols/22778.pdf

there is however a research trial called BOCS which is looking for new genes and they do testing prior to the research on families with 3 breast or ovarian cancers or where one individual has bilateral breast cancer regardless of age as long as they are all related.

hope that helps

lulu x

Hi Lulu

Thank you for the information. I wondered if one close relative would count as enough as mum had breast cancer in her late 40s and passed away. I’m not totally sure what type of cancer it was, but I know she had tamoxifen so don’t think it was triple negative.

Apart from her and me its pretty much a male-dominated family, with no sisters or aunts so I don’t really know whether any of these new guidelines would apply for me or not.

Ellie

Ellie

its the same guidelines for everybody… So its more reassuring if nobody else has had cancer.

might still be worthwhile asking to be referred to your local genetics department to discuss it fully.

Lulu x