Preventative surgery for breast cancer

[hansan]

Hi

Anyone out there had, or knows of anyone who's had, preventative mastectomy/other surgery for breast cancer?

In brief, I'm considered high risk for breast cancer - mum, aunt, grandmother (twice) and great-aunt have all had it. Mum has been tested for defective breast cancer gene and was negative but doctor's said despite this I'm still considered very high risk for developing breast cancer in the future.

I've been going for yearly mammograms for the last few years (I'm 40 now), and got called backed last year (shadow on the x-ray) and had an MRI, which turned out to be ok. I will now have yearly MRIs as they're much better at picking up tumours earlier (mammograms are not much use for anyone under about 50).

Despite all this, which I'm really grateful for as I know it costs the NHS a lot, part of me just thinks I'd be better off just having a double mastectomy now and then I don't have to worry about the possible future diagnosis. I think also that it's easier to reconstruct the breast at this stage than if I had surgery for removing a tumour.

I've talked this over with my DH and mum - both have said that it's up to me and they'll support me whatever I decide. DH is great and said that much as he loves my boobs he loves me more.

Would like to hear views on what you'd do?

I haven't, but a good friend has. Her mum died of breast cancer, and for years my friend struggled with numerous cysts which kept having to be removed.

She finally talked to a lot of people, then made the decision to have a double mastectomy at the age of 38. The actual surgery took far longer than expected because they kept on finding new cysts - each bigger than the last! None were cancerous, but it only a matter of time...

She had reconstructive surgery a few months later, and is really happy with her decison. I think she was very brave, but it was absolutely the right thing to do.

Good luck with your decision

Have you had the defective gene test?
(Is this the BRACA 1 & 2 test you are talking about?)

If your Mum has had the test & its negative, then there is a good chance that you will be negative too.

I know that if the test results are positive they ask you if you have considered a preventative mastectomy.

My Aunt died at 47 from breast cancer (before the gene testing was available) her daughter (mid 40's) has been tested and has the gene, she had a preventative hysterectomy, and is considering the mastectomy too. My Uncle has been tested he has the gene but nothing sinister in the way of cancer yet. His daughters are both getting tested.
My Mother however has decided she doesn't want to know. So my sister & I are both getting tested.
But just based on my maternal Aunt having it, I have been told that when I turn 40 I will get regular mammograms.

Have you seen that programme by Dawn Porter which was on recently? Its a 2 parter, I think on Living. Her Mother died of breast cancer when she was only 36 and she researches preventative mastectomies and speaks to people who have had them. I don't normally rate her at all, but this programme made the whole possibility much less scarey and I really recommend it. HTH x

Here is some information about the TV programme.

Thanks Gumbo, good to hear that your friend is happy with her decision to have the surgery.

Lizzzombie - fortunately my mum tested negative for the BRACA 1 & 2 test but I'm still considered very high risk as all women on her side of the family have had breast cancer. Thanks for the info re the Dawn Porter programme, will have a look.