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What to expect ?

5 REPLIES 5
Guest user
Not applicable

Re: What to expect ?

thank you ladies so much for your very helpful comments...I wil get back and let you know how I get on 🙂
Take Care lovlies
Kate x
dib
Member

Re: What to expect ?

Hi Kate,i was diagnosed with bc in 2010 after losing my mum and aunt to the disease.I wanted to be tested before this but because i didnt have a living relative with bc and my mum and aunt had died over 10 yrs previously they couldnt do the test,However once i was diagnosed with bc they did the genetic test(after thorough counselling,they didnt do it on the 1st visit)which was a simple blood test,and i tested positive to brca 1 and there was a sequence change in brca2 (which they explained meant a possible positive in brca 2 which they didnt pusue cos I was positive anyway).Because of this positive outcome I chose to have a double mastectomy and my ovaries removed and im happy with the results.My daughters aged 28 and 30 were also tested.The eldest was negative but the youngest tested positive,She has recently had a double mx with immediate recon and she is also happy with the result and has just returned to work.She is very relieved the fear of being diagnosed with bc has been greatly reduced from a possible 85% and she will have her ovaries removed when she is 35. My aunts daughter doesnt want to be tested and that is her choice,however as a mum i was glad my girls were tested and initially I felt so guilty for passing on this gene.I was more devastated than when I was diagnosed myself.But please dont worry about going to talk to the genetic people.I found them to be very caring and will explain everything to you in words you can understand,they are very patient and understanding and yes it is very complicated but will do their best to help you understand it all.good luck and I hope the results go the way you are hoping.
Di.x

Guest user
Not applicable

Re: What to expect ?

Hi Kate

I was referred to genetics and they do go into a lot of detail so it's best to take someone else with you to absorb all the info. They run through your family history and explain how they work out your risk percentages of having the faulty BRCA genes. They run through different scenarios if it turns out you do carry the gene and make sure you definately still want to be tested. Then they take a blood sample and mine got sent off to Oxford for testing. They ring you when they have the results which can be months or longer. Mine took about 4 months and in my case they couldn't identify brca 1 or 2 but based on family history they think there maybe an inidentified gene fault.
Hope this helps and good luck.
Tracy
x
Midge
Member

Re: What to expect ?

Hi
I had my first genetics appointment a year ago. In my case it was a counsellor who did it. I had had a pre appointment phone call where I was asked about the history of cancer in my family up toas far back as we knew. On the actual day of the appointment the counsellor went through all of the research she had done on the cancer cases in my family and highlighted where the genetic risks were. She felt that my risks were quite high and I have to admit I hadn't been prepared for how this made me feel. It was like iwas being diagnosed all over again. It was no longer a disease that just effected me but something that could effect my sister,my niece and children. I was very upset as I hadn't been expecting to have a high risk. I was told that on the scale they used ( Evans scale ) I scored highly enough to have the blood test for brca1/2. So I decided to have it there and then. The results were ready in about 10 weeks.
It is a complicated area. There are few definites and what you do with and how you interpret the information varies greatly. In the end I asked to see the top genetics consultant in my area to get the clearest picture I could about my situation before making any decisions.
Take your time, while knowledge is power, it is also a heavy burden sometimes.

Good luck with your appointment.
Dx

Lucy_BCC
Member

Re: What to expect ?

Hi Kate

Whilst you await replies from your fellow users you may find the BCC publication 'Breast cancer in families' helpful to read through, it may answer a few of your queries:

http://www2.breastcancercare.org.uk/publications/worried-about-breast-cancer/breast-cancer-families-bcc32

Best wishes

Lucy

Guest user
Not applicable

What to expect ?

Hi everyone
I have been referred to genetics and have my very first app on Friday.I have stopped myself from reading any articles about it ....as when I did it may aswell have been in German with all the abbreviations so Im going with an open mind.Without going into my history it was just a basic question if anyone could tell me what to expect on the first visit.I have 2 daughters 15 and 18 and all I want to do at the end of the day is to protect them from this awful disease and know I have done all I can.Although I may not decide to go down this route Im just going to go and see what they have to say.I feel a bit embarrased and probably very naive asking this but are tests done through a blood test or am I going to need a degree to understand what is actually involved.
thanks fo taking time to read my post
Kate x