Genetic testing... what can I expect?

Hi. I have known for some time that my dads side of the family are carriers of the BRCA gene for breast cancer but have tried not to think about it.

I am now approaching 39 and the age at which they were diagnosed or even died of it and have finally plucked up the courage to discuss my concerns with the gp. 

Basically every female on that side of the family back to my great grand mother has died of it, had it and been treated or has tested positive for the gene during genetic tests.

the doctor took on board all the information and referred me to the genetics department. I’ve had a confirmation of receipt of the referral from them and was told that a consultant will review the referral and will decide how quickly I need to be seen but it could be  up to 18 weeks.

my family aren’t particularly close and so open discussions about this subject aren’t easy to come by so I was hoping to find some support on the forum from someone who has been through the same so I can know what to expect. 

Even prior to me approaching the gp I have been conscious that I may already have it, probably paranoia I know. I do check my breasts but they are very lumpy and painful anyway and I’m worried that I could miss something. I’ve also been getting an aching neck with lymph nodes easily feelable and a tight feeling across my chest just underneath my collar bones. Now that the referral is in I feel that I would be seen as a drama queen or a worrier if I go back and ask for the gp to check me out. 

I’d really appreciate some feedback and advice!

x

  • Sorry just seen this. Hope you have gone down x

  • Hi not yet would you believe I'm still waiting!

  • Sorry, been rushing round at work and school run! Hope it’s over and done xx

  • Don't  worry I know that feeling well.

    I finally went down around 2.39pm but didn't  come  round until 6.45pm.

    I've had no food for 24hrs and only been offered sips of water so far. 

    I'm wearing an oxygen mask as my blood oxygen is low  and mouth so  dry it's painful.

    I have a drain fitted under one arm where nodes  were removed and that's very painful at the moment. 

    Hope all ok with you

     

    Karyn x

  • Hi Karyn

    im so sorry for the late reply. Past two days have been challenging.

    how are you doing?? Are the doctors pleaded with the outcome of the surgery?? Hope your babies have been able to visit and cheer you up.

    Alison x

  • Hi Alison

    Good to hear from you.

    I only got  home this evening but experienced a traumatic time during my stay to be honest.

    The surgery went  without  any complications but during my first  night I had  a drain fitted and it  became detached and I was  distressed as was bleeding  heavily from both armpits  where I had nodes  removed and nobody  came to assist me after I bleeped  for over 30 mins which was scary.

    I didn't get much rest either due to constant noise and distraction in and out of the ward.

    They  basically just wanted the beds back whether you were fit to leave or not, and in a way I'm glad to be home but in lots of pain on both sides  and feeling very tired.

    I have  to go back on the 15th May for  biopsy results  of what  was removed, and pray it's all gone completely  now.

    I will be discussed at their  next MDT meeting as to the next course of action which is possibly radiotherapy. 

    Thanks for thinking of me.

    I hope  you are ok and that you have a great bank holiday weekend.

    My kids didn't get to visit  as they weren't allowed on the ward buy I will be having them home tomorrow.

     

    Karyn x