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Some advice on testing with no living relative.

6 REPLIES 6
Lulu34
Member

Re: Some advice on testing with no living relative.

Hi AG

under the new NICE guidance ssued in June 2013 they can now test unaffected individuals if they are no available affected relatives and your family risk is high enough to warrant testing.

although guidance in place individual health boards may not have funding in place to carry this out if your family ere deemed high enough risk.

before June only living affected individuals could have full myation analysis but there are a small number of families like your own where nobody is alive to be tested.... the problem withtesting a nn affected individual means a negative test wont tell you whether there is a gene in your family and you never inherited it or if there is no known gene change and your family may still be at an increased risk.... it may not give you all the answers your hoping for as most people do test negative.

glad you are getting referred though, as its important to discuss all the issues with a genetic counsellor.

Lulu x
Lilac51
Member

Re: Some advice on testing with no living relative.

Hi AG
We have a history of breast cancer in my mother's side of the family - my grandmother, mother, aunt and sister all had it and are all sadly deceased. In a strange way I was almost pleased when I was diagnosed as I felt I could help my 2 daughters and 3 nieces who are all in their 20s and 30s. I had a blood test in the middle of chemo which was no good as they couldn't harvest enough cells to test, then I had one after I'd finished treatment. It tested negative for BRC1 and BRC2 but we were told there is obviously a gene at play somewhere, they just haven't identified it yet. I'm getting off the point here - what I intended to say was, once she found I tested negative, my eldest niece said she was going to go off and have some private testing for herself, based on the fact her mum developed cancer when she was in her forties whereas it developed later with the rest of the family. I haven't asked her how or where she is getting this done.
I'm sorry you have this worry, I do understand a bit of what you are going through. xx

Lucy_BCC
Member

Re: Some advice on testing with no living relative.

Thanks Rattles, here's the link for AG1980 to the family history page where you will also find a link to our publication on the subject;

http://www.breastcancercare.org.uk/breast-cancer-information/breast-awareness/am-i-risk/breast-cancer-families

Best wishes

Lucy

AG1980
Member

Re: Some advice on testing with no living relative.

Thankyou both for your replies, I've made an appointment to see the gp and go from there. I'm galas to have discovered the forum and some lovely people willing to share advice.

thankyou again!
Rattles
Member

Re: Some advice on testing with no living relative.

Hello AG,
I am really sorry to hear of your recent scare and your family history of breast cancer.
I would suggest going to your GP and asking for a referral to your nearest Genetics Centre or Family Hisotry Unit. Have a look at the BCC leaflet on Family History (BCC- can you put the link up if you read this?)
I ave a brac1 mutation and thought I would share that in my experience they can only test individuals who hadve actually developed breast cancer. I am not sure why but its something to do with the fact that it is easier to find the mutation when it has gone wrong. BUT, this should not deter you from going to the Genetics Centre as they can still give you a sense of your personal risk and the best way to manage it- ie this might be regular screening, or for very high risk - surgery. There is a lot of confusion in this area as 'the genetic test' does not always identify mutations and is only one option of many others available.
Breakthrough breast cancer alsodo a very thorough document on managing family history which explains the different risk categories and the options, but it might be a bit overwheliming in the first instance. Ring the BCC Helpline and have a chat.
Good luck, Rattles x

Tolliebelle
Member

Re: Some advice on testing with no living relative.

Hi
I am no expert but I believe they do a scoring system ie the fact that your mum had BC gets so many points and so many for your grandmother etc the younger they were gets higher point score, not sure they have to be still alive but wouldn't think this would be a factor. I would have a chat with your GP and ask if he can refer you to the genetics people. Also have a look at the NICE guidelines on factors to get you tested again GP should be able to give you those.
Good Luck and hopefully you will not have faulty gene xxxx
AG1980
Member

Some advice on testing with no living relative.

Hello,

Am new to the site and after some advice. I'm 32 (33 next week but we'll ignore that!!) and have a history of breast cancer in my family. My mother had breast cancer aged 35, my grandmother in her early 50's and my great grandmother later in life; my aunt also had breast cancer. All of these family members are now deceased.
Last year I discovered a lump in breast which came back as a benign cyst and was left alone. I'm well aware of my risk of developing breast cancer given my family history but from reading the information it would seem that genetic testing would not be an option for me as I have no living relatives with the disease.
I'm a single mummy to two little girls and work full time. I've often sat and thought that becoming ill would prevent me from working or my children could lose their mum altogether; the thought of this for the last 10 years or so has been so tiring and feels so heavy, especially after my scare last year.
I guess my question is what are the options if genetic testing isn't an option? is there anything I can do?

Realise this is a bit rambling but thankyou for reading and any advice would be greatly appreciated.
x