Genetic testing and mental health

Public Archive
1

I was referred for genetic testing by my GP due to a maternal family history of breast cancer and combined breast and ovarian cancer.

I received a telephone call from a lady at the breast clinic who asked me if I was on medication, I said I was, she asked what for and I explained that I was being treated for bi-polar.

I was then advised that i would not be able to have genetic testing due to my mental health. I was still asked to complete a form with my relatives names and addresses so that they could be contacted and permission requested for their medical files to be looked at.

I attend the clinic on a yearly basis to have a mamogram, once I had to ring and change an appt due to work committments and was asked for my ref no, I was told it would start with  a certain letter, I said no my ref number begins with something else, the person on the end of the phone then advised that I was on the genetic screening programme, I had no idea of this.

Does this then mean that contact has been made with my relatives and they do have the brca1 or brca2 mutation?? No-one seems to want to answer that question.

Wouldn’t it be simpler to just let me know one way or the other? I think it would!

I would like to be tested, I would rather know there is an issue and take preventative measures to reduce the risk than be left wondering.

Is it not fair that a person be considered on a case by case basis on suitablitity and ability to cope with the outcome rather than a blanket ban as you have some other condition. Why shouold that prevent me from being able to take preventative measures should I choose to do so?

Is there any way I can get around this? Can I request this testing at a higher level or at least have my request considered.

I have looked into private screening but as a single mum working full time I am unable to afford the £1300.00 cost.

I know some people may have had the test and wished that they hadn’t but I would like to know, take action if required and just get on with it!

Is there anywhere I can go with this please?

Thanks

2

Hiya

It sounds like your are being given the run around and people are not being straight or fair with you. Maybe get in touch with www.breastcancergenetics.co.uk They support women and families who have or might have a genetic mutation. 

And or go back to your GPwho should be supporting you. You are right, you need to be cared for properly, not just regardless of other health problems , but because this is going to add to your overall wellbeing, good luck and don’t be put off, xxx

3

I am about a year after you asked this - but I have a history of mental health problems, and saw a genetic counsellor last week. They asked about my mental health, and if I felt I would be ok to take the test - she said although they ask, they wouldnt refuse just because of a mental health problem - it would just be a case of making sure you had the right support in place, and making sure you were at a point where you could cope with it.

I am still on medication, and do still have periods of depression/ flare ups in my PTSD.

 

I was wodnering if you ever got any further with this?