About to undergo genetic testing

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Hello,

 

I’m new here. Im 28, and we have the BRCA2 gene running in the family.

I had my first appointment with the genetics team a week and a half ago, and another appointment tomorrow.

 

I know that I want the test, but I am feeling a little aprehensive. I got told its up to a 4 week wait for the results, and I am not really sure how I am going to manage it. Our family are far from close, and although people know I have chosen to go ahead with it, and that it will likely be tomorrow that I get the test done, nobody has checked in or called, and I know that I will likely be on my own with it until I get the results.

 

I was hoping we would sit down as a family and at least chat about the gene/implications, but unfortunately this hasnt happened. Everything is very hush hush!

 

The idea of finding out fills me with dread, but I know that I would want to go ahead with a masectomy if I test positive. I watched my best friend die of cancer 3 years ago, and really dont want to end up in that boat, so it doesnt seem like much of a choice to me - I will be kicking myself if in 10 years time I end up ill and I could have done something to prevent it.

 

So, has anyone got any advice with dealing with the wait? Are any of you undergoing testing at present or have come out the other side? 

 

I would love to chat to people about their experiances, and would very much appreciate a hello even if you have nothing more you can say - I guess I want to make this feel a little less like a dirty secret I’m carrying around with me!

 

I think tomorrow is the day for me. I had the option last week, but needed a bit of time to get my head around it. I feel as ready as I’m ever going to be, but I am pretty nervouse about the whole affaire! 

 

Hope to hear from some of you soon,

 

Charlotte.

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Hi Charlotte

 

I have just had surgery for BC stage and seem to recovering well. Two days before I went into hospital for my op, a eight page family history form came through the post, was surprised as I had not been informed this was going to happen. It took me and my daughter two hours to fill in, it was so surprising how many many people in the family had cancer, though not passed away from that condition. Luck for me I research family history as a hobby, so it has come in very helpful, plus also I have four daughters. I am now waiting for my first appointment.

 

Love Peggy

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Hi I’ve just been through genetic testing several weeks ago after being diagnosed with bc in March
I was aware that the gene was in my family as my mother aunt and grandmother all had bc. I must admit that I hadn’t thought about getting tested until being diagnosed and my surgeon suggested that I should get this done. As I have a daughter and granddaughters I really wanted to know if I could pass this on to them
The hardest part was finding out family history but was very interesting to discover how many family members had forms of cancer throughout the years.
Had blood test and a wait of 6 weeks for results which showed that the gene hadn’t shown any change bc wasn’t gene related. They did suggest that daughters and niece start getting checked age 35.
Because of my family history I was having yearly mammograms until I was 55 then every 3 years it was at this that bc was found I had no indication of anything wrong. I’ve been in for surgery and finished radiotherapy end of June. Started hormone treatment in May. With all this going on I having to decide about if you want to know about this gene feels like just want someone to tell you its going to be okay. There’s nothing wrong with being anxious about this but you’ll find the genetic nurses explain everything well and you can talk through your concerns
Your right most people don’t want to talk about bc or whether you might have the gene. So this forum is great to be able express your feeling to others who are going through similar issues.
Good luck tomorrow

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Hi Charlotte

im sorry you are going through this and oarticulary that you don’t have your family support.

im not BRCA but believe I do have an inherited gene predisposing breast cancer as we have a very bad family history both my sisters mother and grandmother have had BC.

i am having a prophylactic double mastectomy and recon next month. It’s very daunting but if you do find out you are BRCA + then I will happily talk to you about my expierience although I am older than you as I’m in my forties.

good luck tomorrow

SL X

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I am going to a genetics appointment on Monday.  I filled in the checklist a while back. My sister was tested last year when she was diagnosed and was brac2 negative,  but there is a lot of bc in our family (us 2, 2 nans, grandad,  2 aunts and a great aunt). We have already signed up for the 100000 genome project. 

 

Even though I have been diagnosed,  I still feel apprehensive having the test, it would still feel weird being told it was positive

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Hi guys

I’m 32 was diagnosed with grade 3 bc last summer. Been referred for genetic testing and now waiting for results. Also had first mammogram this week on healthy boob. Hopefully won’t be called back in for either although there has been no reason found to suggest why I should of got cancer…

Xx

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Good luck!! God bless 

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Hi Ladies,
First visti to this part of the forum as my moms recently talked to me about testing. She has secondary bc 15 years agter her firsr diagnosis and we have a somw family history that we know of ( 2 aunts and nan but a different cancer) how donyou start the ball rolling? Do i speak to my gp or mom to her consultant? Info on the net about testings a contradictory so any help would be great x

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Hi Mrstimps. Not sure if you’re UK based. As I had 2 primaries, I was referred to genetics. If they identify a faulty gene, the team will then write to my relatives to advise them. Has your Mum been tested?

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Good luck for today! X

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Good luck x

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Hi all, I have just been diagnosed with bc and also been referred for genetic testing. I’m not sure that they will test me as my aunty has already asked and they said she didn’t meet criteria,. I’m really hoping I will be tested so I know either way and also feel I need to know for my children so they can be tested if need to be when they are older.

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Yes I filled it in 2 weeks ago now, very difficult filling it in as my mum passed away @29 and I was 10 so had a nightmare getting the history as there is only one member of the family to talk to but I think I got everything I needed, hopefully I should hear soon. Is this a test that could be paid for privately if I needed too? X

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Thank you both for your replies. Hope you both get your answers soon. I should probably take smaller steps and not worry about this till I hear back from them. I ahoy a concentrate on my results from my mastectomy first, think I’m getting ahead of myself.

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Thank you 2 days to go now so nervous x

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Fingers crossed xx