I recently had a male left breast masectomy. What are your thoughts of the BRCA tests? I have 2 grown daughters (38 and 44).

[8892sr368]

I was recently advised against having the test by 3 first cousin cancer survivors. They said it could cause future insurance and employment problems for them. Your thoughts?

[MarionL]

It's a tough decision to make.. My mum was diagnosed wth OC and I asked her to have the test as I wanted to know if I was at a higher risk - I have two young daughters and wanted to have as much information as possible for them as well. I had cancer (sarcoma) 7 years ago so already struggle to get insurance but I spoke to Macmillan who pointed me in the direction of some insurance companies that are more helpful to cancer survivors - ironically they didn't even ask about any genetic testing even for life insurance... I haven't had any experience of employment problems so really can't comment about that.

[Hidden]

I have had breast cancer and have ovarian cancer. My oncologist also mentioned insurance problems and asked me to think about what my young teenage daughter would do if I tested positive. She also said that since I do not have any relatives that I know of who have had breast cancer or ovarian, though two of my paternal aunts have had what was described as "stomach cancer" , it was unlikely that I would test positive. Have you discussed it with your oncologist?

[wendydee]

Hi

Forgive me if you get this message twice. I replied, but it's not here! Look on the ovacome.org.uk site, under 'about ovarian cancer' option on left and then there is an article about familial ovarian cancer where it mentions genetic links. It also mentions some Macmillan info that may help you.

Good luck. All the best,

Wendy xx

[Hidden]

Here are my thoughts...

Cancer Research UK think that between 10 and 20 out of every 100 breast cancers diagnosed in men (10 to 20%) are due to inherited faulty genes. In men with breast cancer the BRCA2 faulty gene is more common than BRCA1.

Do you have a history of cancer in your family? If more than one of your family members has had any of these cancers:

~ breast cancer

~ ovarian or fallopian tube cancer

~ prostate cancer

~ pancreatic cancer

then you should consider testing. Ask to see a genetic counsellor for advice.

Regarding insurance and BRCA testing - in the UK there is a voluntary agreement (called the Concordat and Moratorium) between the Department of Health and the Association of British Insurers.Under the terms of the Moratorium you can apply for up to £500,000 of life insurance, or £300,000 of critical illness insurance, without having to tell the insurer the results of any predictive genetic test.

I got ovarian cancer at the age of 48 not knowing that I had a BRCA mutation. I tested positive for BRCA after my diagnosis, Had I known beforehand I could have been proactive in reducing my risk. My children have all now been tested (two daughters tested positive and son tested negative) and armed with this information can substatially reduce their risk of getting cancer.

Best wishes to you.

[nandi]

I have also heard that men who have had breast cancer have quite an increased risk of being BRCA2+. I inherited BRCA2+ from my dad, he is now 83 and has never had cancer although several members of his family on the paternal side have had breas,t ovarian and prostate cancers. Dad tested positive after I was found to be BRCA2+ I had symptoms for months before being diagnosed and if I had known would have sought treatment much sooner.

Wishing you and your family luck.

[TinaWright]

Hiah everyone,

Interesting subject eh! - I was tested positive with braca one after my OV cancer diagnosis, both of my daughters have had the test and they both carry the mutation. However, as Charon said knowing is the best thing, had we known we may have been able to prevent it from happening.

My daughters now have choices and will be offered hysterectomy as soon as they have finished having babies, by key hole I may add. They now have yearly breast screening where as if they didn`t know they would have to wait until they reach 50 and then only be tested every 3 years. This surely puts them in a good place? They can have breast suurgery now if they wish too or if not now if they decide too at a loater point.

As for insurance and employment there is NO law that states that we have to be open about having a faulty inherrited gene that increases our cancer risk. Therefore it won`t affect insurance or employment in any way.

ONLY if we have had cancer` it may do`.

I hope these answers ease your mind about doing the right thing.

My eldest daughter was worried about both of these issues and she has only very recently been tested, the genetic counsellor did put her mind at ease over this, so rest assurred this is fresh information.

Also our risks are within a life time and hopefully a life time could be decades away!!

Also it was so reassurring that Nandi`s Dad has reached 83 years old with faulty braca 2 and has still not had cancer - whoop! whoop! best news I`ve heard all day thank you for sharring that Nandi, thank you.

Love from Tina xx

[8892sr368]

Thanks for sharing your insights. I'll get the testing done.

[Hidden]

Tina, Charon

Having tested positive for Braca 1, what do you now do - ie is it a question of more frequent screening, drugs, or what?

Monique

[SueLR]

Hi there,

I knew I had a distant family history but wasn't tested until I developed OC, and do have the faulty gene.

I was told there isn't any screening for OC. Daughters can be screened earlier for breast cancer if the parent has the faulty gene even if they are not tested themselves.

I have come to the conclusion though, that the important things, whether daughters want to be tested or not, is that if they developed symptoms, both they and the doctors would take it more seriously, be more vigilant and vitally, in my opinion, consider OC as a possible diagnosis sooner.

Warmest wishes

Sue

x

[iamstillme]

Hi

As per the rest of the ladies as yet as far as i am aware insurance companies have not yet added questions about genetic screening . However they may ask if any of your parents/sisters have been diagnosed with certain conditions before a certain age . I think usually either 60 or 65 . If you test positive for BRCA 1-0r 2 then there may be targeted therapies for you in the future should you ever need it . It will also give the choice of prophylatic treatment for children in the future . I would certainly ask your consultant again or perhaps call the ovacome nurse . I have just had the genetic screening done and awaiting results and do dread the thought that passed a faulty gene to kids . Think and hope this is unlikely and i am just an unlucky so and so as no family history of cancer

Hope this helps and all the other replies have helped

Ally