Genetic Test Results - Finally !

Question

I finally received the phone call that I had been waiting for nearly 10 months &nbsp;last Thursday. I have tested postitive for the BRCA1 gene. &nbsp;I feel a great sense of relief but also a little anxious about some of the decisions I have to make as a result of this.
The first concern is telling my family. I've spoken with my immediate family, my Mum. Dad &amp; 2 brothers. I have most likely inheritied the faulty gene from Dad. His Mother had breast cancer and his Aunt had ovarian. However this happened in their late fifties/early sixites and I don't have any memory of them as they died when I was baby. My Dad doesn't really deal with emotion too well and can be quite abrasive. When I explained to him that &nbsp;I had the gene and that he was eligable for testing his response was "I'm not getting that nonsense done, what good will come of it?"
I know thats just the way he is so I'm not upset or surprised by his response. Also I suppose it's not much a concern of to him as it would be to the female side of the family. He has an older brother and a younger sister. Both of them have daughters who I'm not particular close to or to be perfectly honest don't really know too well. We all live at other sides of the world and I have only met them maybe once or twice. However I feel that I have a duty of care to let them know. &nbsp;I would want to know but it's not the type of thing you want to tell someone over a private message in Facebook. The gentic clinc explained that only my Dad and brothers would be eligable for testing at &nbsp;the moment. They want me to do another blood test before I let anyone else in the family know. Is this normal? I just thought if you got it you've it.
Another concern is the surgery. I'm probably jumping the gun a little as I haven't even had my referal letter to see the surgen yet but I'm still thinking about. As my cancer was triple negative there are no hormone pills I can take as a preventative measure. I'm not particulary large chested but feel like I would like imediate reconstruction. Problem being I had a radiotherapy so does this mean implants are out of the question? It just seems more appealing to me as there is less recovery time and less scarring. I don't want to go to my surgen unprepared I obviously listen to what the experts have to but want to find out as much as I can from people who have actually gone through it.
Hope everyones travelling well, thanks for letting me vent. :-)

susan_linda · Answer

What a long wait for your results. I am still waiting and like you I am expecting a positive result because the family history is huge.

I had a double mastectomy and immediate recon last year. Second dose of Bc so wanted both removed. They looked good but as a result of radiation 12 years ago I had lots of trouble with a tiny area of skin. Finally after lots of trying to save the skin I gave up and had the implants removed. I can't tell you how happy I am now with a flat chest. In a few more weeks I can be measured for prothesis but honestly I think I will investigate buying a padded bra for those special occasions. I was only small to start with.

Whatever you decide make sure you are fully informed. I am glad I tried. I have no regrets but very satisfied with my cancer free flat chest! Cheers. sue

susan_linda · Answer

What a long wait for your results. I am still waiting and like you I am expecting a positive result because the family history is huge.

I had a double mastectomy and immediate recon last year. Second dose of Bc so wanted both removed. They looked good but as a result of radiation 12 years ago I had lots of trouble with a tiny area of skin. Finally after lots of trying to save the skin I gave up and had the implants removed. I can't tell you how happy I am now with a flat chest. In a few more weeks I can be measured for prothesis but honestly I think I will investigate buying a padded bra for those special occasions. I was only small to start with.

Whatever you decide make sure you are fully informed. I am glad I tried. I have no regrets but very satisfied with my cancer free flat chest! Cheers. sue

deanne · Answer

So sorry to hear your news and that you now have more decisions and surgery ahead of you. But at least you know at last and can take action. I would recommend that you join the reconstruction group on here if you are not a member already. The information and real life experiences available in this group is excellent.

Wishing you all the best for what lays ahead. Deanne xxx

hazel_m · Answer

Sorry to hear you have more decisions to make. I have my first appointment with genetic testing on the 23/10 and I'm quite apprehensive about it. Not really sure I want the results, that sounds a bit weak I know. It's just that I'm getting back to some sort of normal now and I think I will be set back if I get positive results. My family has a dreadful history of BC, my sister had BC in the 90's and was tested. The results were negative but they needed another living relative so they could study more and I stepped up to the plate:) &nbsp;I'm really only doing it because it could help future generations (nieces) down the track. I wish you well in whatever you decide, you are right in finding out as much as you can, knowledge is power, take care,&nbsp;
Hazel xx

jessicav · Answer

Hi,
Your Dad has probably had his emotions badly rocked by your breast cancer, especially as he lost his Mum to the disease.If he does not deal well with emotion he has probably never really&nbsp; processed his grief at her death, and now is&nbsp; both reliving losing her and fearing losing you. He may think (as my mother did) that you were blaming him for your breast cancer. So maybe tell him that even without this gene, more than one in ten women get this cancer, so it is not an unusual thing to get.
( He also needs to know that he and your brothers are also at higher risk of getting breast cancer, yes men do get it, and it is a higher risk for men with the gene than otherwise)
You might like to explain very gently to your father that knowledge is power. And that while he may be genetically responsible for passing on this gene, there is absolutely no blame to be laid on him, and he has nothing to feel guilty or bad about. No more than if he passed on a gene for brown eyes instead of blue. And no more than you have to feel about your own children's risks
You could explain to him that it is helpful for people who have a high chance of having this gene to know whether or not they do. They can then manage their risk carefully and wisely, and get help from knowledgeable medical experts on their best options. Some choose to have children at a younger age and then to have surgery to reduce their risk of&nbsp; breast cancer, having breasts and ovaries removed. Others are meticulous about having annual mammograms and scans.
&nbsp;It is hard enough dealing with the impact on you without having to handle all the problems that go with dysfunctional family members.
Re implants vs transplants, it can pay to get two or three opinions before deciding what to do. And do join Louise Turner's Breast Reconstruction group in BCNA: she sounds really lovely and is running a brilliant group that would be the perfect place to go to for all the answers.
Best wishes,
Jessica
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