62333members
328104posts
cancel
Showing results for 
Search instead for 
Did you mean: 

Help and advice on gene testing

8 REPLIES 8
Member

Re: Help and advice on gene testing

yes that's very true.

I agree my guilt is unbearable at the minute, for both children but more anxious for my daughter.

x

Community Champion

Re: Help and advice on gene testing

Maybe wait til you have had that discussion with the genetic counsellor then ? I am seeing a specialist in 2 weeks time - I will know more then also. I guess a few years ago you would never have had this information so you and your children would have been a risk without having the possibility of taking some additional measures to help reduce the risk .I feel guilty for potentially passing this on to my son and making his life harder ☹️

Member

Re: Help and advice on gene testing

Hi,

 

Yes so unfair - seeing my genetic counsellor in 2 weeks, lots of questions to ask. 

Thinking about surgery for me again, sorry about your genetic news too .

xx

Community Champion

Re: Help and advice on gene testing

Never a good time to have that conversation .Maybe pick a time when you are feeling strong and have information ready for them . Unfair isn't it ☹️

Member

Re: Help and advice on gene testing

Thank you ,  i have a son and a daughter in their early 20's and know i need to have a discussion very soon, it's so difficult though particularly as 3 years ago we were placed to receive the negative BRCA 1 and 2 results. 

 

I dont know how to start the conversation 

 

Community Champion

Re: Help and advice on gene testing

Hello JL 66 ,welcome to the forum .It is really hard getting your head around a genetic diagnosis that impacts on your children also - I have had 2 cancers in the last 4 years and I have been told this may be connected to a genetic defect which is now also affecting my bones .My son is 20 and I hate to think I have passed on this weakness to him .He is aware of the concerns and we are talking about whether he wants testing at this point ☹️I guess at least now we have the information to help them know what to look for and preventative measures 🤞🤞

 

Member

Re: Help and advice on gene testing

hi Clare,

I can help here  - I was diagnosed in 2014 and my sister about 2007 and my mum 2008. At the time they wouldn't test me for the BRCA1 OR 2 genes as they said it was just bad luck and also i needed 4 family members to have been diagnosed  - ridiculous as i have a small family and my nan died many years ago.

I pushed and pushed and although the NHS refused I was told to take it up with the BOCS charity -( breast and ovarian cancer study, this was free )  I had to go to Northwick park hospital and had a long chat with a genetics counsellor, I went for the BRCA testing and 3 1/2 years ago i received a letter  ( it took 8 months ) to say I had neither gene. I was relieved particularly for my 2 grown up children. However,  last xmas I had a call to say they had continued to test my blood for other genes and had found me to be PALB 2 positive  - I'm pretty worried again mostly for the children but also I had long forgotten about all my initial genetic worries. 

I have to share this soon with the rest of my family and hope they all want testing, but i keep putting the discussion off ......

I have been told the gene is just as likely from my dad as my mum, I'm now considering further surgery for me ( I had a lumpectomy and radiotherapy ) 

hope this is helpful

JL  X

 

Moderator

Re: Help and advice on gene testing

Hi Clare01

 

Sorry that you havent had a reply yet.  Maybe you could give the free Helpline a call, 0808  800 6000 where one of our specialists will be able to help you.

 

Alternativelty you can post a question to one of our specialists in the Ask Our Nurses area of the Forum.

 

Best wishes
Anna
Digital Community Officer

Member

Help and advice on gene testing

Hi I have had the brca gene test done in 2017 and it came back negative. I have been told their is another test I can have which is for the plab2 gene I did phone the hospital where I had my original gene test done and they wouldn’t test me for it. I do have a strong family history of breast cancer I was told the only way I get it done is to pay privately which is very expensive. One lady I know she asked to be tested for other genes even know her brca was test came back fine and had the plab2 test done and came back positive. It just feels like it’s offered to some people and not to others, I want the test so it will put my mind at rest. Has anyone else experienced this at all? Thanks Clare