Genomic testing for suspect cancer genes that may run in families

Hi,

I have had several cancers & my haematologist suggested gene testing. he has enough of my tissue for testing, just have to wait until there are several to be sent away.

My eldest daughter was diagnosed since then with breast cancer since this was suggested. The GPs we use straight away said he would get forms for her & her sister & get things moving. On the NHS!

Scilly

Hi Aitch

When your wife had her initial diagnosis 3 years ago, did she have the OncoType DX Test done, if so did she get a low score so no Chemo? 

Hi

i have been registered with genetics dept in local hospital for years as my family had breast cancer in under 50s on both sides of family. They referred me for annual mammograms. I have subsequently had bc diagnosed so contacted them once again. I had a blood test for ‘breast panel’ 8 known gene mutations associated with bc. I received the results this week and I am negative for all. They are still recommending my daughter contacts genetics clinic when she is older as science will have moved on and other genes may be involved. 

If I had been positive for any mutation then further members of my family would have been tested for themselves and their children.

This was covered by nhs. 

Hope this helps

Hi,

It was nearly 7 ago that my wife was told she had Primary BC stage 2. We had to pay for the ONcotype test at that time as the analysis was only carried out in USA.  It came back low risk as you say, so radiation and no chemo at that time.

Aitch

Hi,

thanks for the response. The question about the genomic test has arisen because both she and her elder brother have had unusual cancers but are still surviving. Her brother had skin cancer in his 40’s ( melanoma). He was then aged 59 diagnosed with lung cancer, non smoker. After treatment Chemo and rads to brain, he is still alive aged 77.  My wife had a rare carcinoma to her mouth in her early 50’s , treated by surgery alone which was successful and then BC in her mid sixties. She is now 72. Her younger brother aged 67 has not had any cancer, but her mother did die from BC aged 74. So that is why we feel it important to have genomic test which as Onclologist says May aid treatment choices and determine if children/ grandchildren may need testing.

Do you think the testing might be available on NHS?

Aitch

Hi

I think the only testing to be done on the NHS is for the Braca mutations - there is more info here https://www.nhs.uk/conditions/predictive-genetic-tests-cancer/

i had breast Cancer age 51, my mum at 69 and my aunt at 80 but we are not eligible for the test.

I think the problem with paying for the Oncofocus test would be what you would do afterwards ? What if the process picks up that there is a bigger than normal possibility of having a certain cancer , and not being able to do anything about it unless there is a screening process in the NHS-for that particular cancer ? Did the oncologist give any indication of what help you would have after the private test ? 

I assume if you already have cancer there is the tailoring of treatment ,but again if the treatment hasn’t been authorised for treatment in the UK what would you do ? And this tailoring would only apply to now, would you need the test on a regular basis where treatments are added, or do they continually check ? 

I think there is a post on Macmillan where someone paid £2000 for the test , but am guessing everyone who may be affected should have their own ? 

I have also read that if you have a positive for genetic cancer screening you need to declare for life assurance and certain jobs ,not sure how true that is however.

Let us know if you decide to continue , I think the test is a while away from being available on the NHS , but for people who think it would help it would be good to find out how your wife goes on ? 

Jo x

Hi,

Thankyou for your reply and information.