Hi mumof3angels.

thanks for taking the time to reply to my post and i’m Sorry to hear about your diagnosis.

I am hoping that I will be seen quickly by genetics so that I can find out if I am a carrier of the gene as I would definitely want to know so I can take preventative measures. I have two children aged 11 & 10. The older child has autism and I am his primary carer so while having operations would be a challenge, potentially not being here for them in the future is just something I can’t bear the thought of.

I lost my nan to BC when I was 21. We were very close and it devastated me. I was aware that there had been other cases in the family but back then it wasn’t known that anyone carried a gene. She lost her mum, her sister and niece to the disease before she passed away with it herself and all those that have been tested are confirmed carriers. I don’t know if it’s the type 1 or 2 gene.

I am going to make an appointment with the gp to discuss my other symptoms as you are right, ignoring them won’t make them go away and better to be safe than sorry.

Many thanks again xxx

Hi again

I think you will feel better when you've  spoken to your gp and voiced your concerns.

I really hope  you can get a swift referral  from your gp to the genetics team just so you can help put your mind at rest.

Once  you have  lost  someone  so close you want to do all you can to take  measures to be around for  your own children.

That's been my biggest fear, not  being around for them and seeing them grow up. I just couldn't bear  that hence why I got myself  tested.

If you do get the test done and it does  come  back positive  for a brca  mutation just remember you are in control  as you  can then take  preventative  measures if you so wish which will ultimately  reduce your  risk of breast cancer by 95%

I hope all goes  well for you  and that your gp is able to put  you at ease with everything.

Take care

Hi again.

I was sent a questionnaire by the genetics team and I had an emotional trip to see my extended family last weekend to fill in all the information. Brought up a lot of old memories for them and me. So hard to have them drag it all up again for my benefit.

i sent the form back on Monday and have had a letter this morning saying they would like to see me in clinic. They’ve also sent an authority form to access my family members medical records from their genetic testing.

im taking this as a positive sign that they are taking this seriously and I hope they will get me tested sooner rather than later. It is the BRCA1 gene that they are carrying. 

Thanaks again for your supportive replies.

xx

Hi I was wondering how you got on and glad to hear things are moving forward for you  with  regards to genetic testing.

I must have been very hard for you I can imagine with regsrd to getting in touch with your extended family, and lots of painful memories.

Please don't feel bad about having to contact them because you weren't just doing it for yourself, you were doing it for your children too.

How I wish my father had done  more when my mum died to get myself  and my brothers tested I can't tell you.

It's hard for me to forgive  him in that respect.

Hopefully you will get your  appointment through fairly quickly and then things will get moving.

It was an anxious 6 week wait for the results, and for me it's still sinking in but whatever it is you will deal with it and make  the right decisions if you were a carrier that is.

I'm hoping  it will be a negative result for you.

I have my double lumpectomy and axillary  node clearance  on 30th April and have been referred to have my ovaries out at some point  in the  next few months.

I won't be looking  forward to premature  menopause at all but at least I will know I took  all the preventative measures to be there for my children.

If the breast cancer ever came back I would go straight for the double masectomy  but  it's hard for me to do that  right now with the children so young as it is major  surgery and I don't  have much help on hand.

I just can't cope with living with the fear but my surgeon said  survival rates are the same for masectomy  and lumpectomy with radiation.

The hardest thing for me is the worry that both my daughter's could be carriers ( age 4 and 5) but they can't be tested until age 18.

Anyway keep in touch and hope everything goes smoothly for you.

I'm glad I was able to be of support to you xxx

Hi

thanks for the message. I will certainly keep you posted and hopefully now the ball is rolling I will get an appointment soon.

It sounds like you have a journey ahead of you with the surgery but anything that gives you the highest chances of being around to see your babies grow up will be worth it. Must have been really hard to choose which surgery to have. It’s so hard to balance what you know needs to be done and caring for your kids at the same time. 

I understand how you feel regarding your dad, he probably couldn’t bear to think about the long term even though it would have helped you. So hard. My dad has chosen not to be tested and I respect his decision but it would have made it easier for me if he had.

i too worry about my two kids but i’m Trying not to think that far ahead until I’ve had my appointment and testing. 

I will keep my fingers crossed for the surgery and will keep you in my thoughts on the 30th.

please keep in touch and let me know how it goes. Xxx

Hi thanks for  your message. I really hope your appointment comes through soon, at least you have got the ball rolling  now.

I understand your dad's decision not to be tested as that was my initial reaction, however I thought it was in my best interests to know for my children.

My surgery is rapidly  approaching and I have my pre  op on 25th.

I'm just trying to distract myself as much as possible which is fairly easy with 3 kids and mountains  of things to  do.

Anyway I hope  everything  goes ok for  you  and please  do keep in touch.

Best wishes  x

Hi

have been thinking of you.

just wanted to say good luck for your pre op appointment tomorrow. 

X

Hi thanks for thinking of me.

My appointment is  11am tomorrow.

I'm a bit nervous  but  will be relieved to get another thing out of the way.

How are you  doing? x

Hi

Yes, one more step forward. :)

im ok thanks, have sent the authority form off and now just waiting for a clinic appointment. Hopefully won’t be a long wait. 

Let me know how you get on tomorrow.

Xx