Second opinion regarding preventative surgery

Connect to people like me Family history, genes and cancer
1

Hi

I was diagnosed BRCA2 positive in September 2019. After seeing the effects of cancer on members of my family I immediately decided to have a risk-reducing mastectomy.

I have been seen by a team of surgeons at my local hospital however I don’t feel like I’m getting all the information I need. Whilst I’m sure I want the surgery I need to be sure they are offering me the procedure that is right for me.

One surgeon initially said TRAM reconstruction then a second said implant based reconstruction however they don’t seem to be able to tell me much about each option and I’m not getting the information I’m asking for.

I haven’t had any appointments in the last 12 months due to Covid-19 but I have been doing a lot of research. I’ve spoken to people who have had preventative surgery, read studies and books and researched different hospitals in my area. 

I’m now considering going to my GP and asking to be referred for a second opinion to a more specialist hospital. I need to be absolutely sure I am being offered what is best for me as opposed to what my current hospital/surgeon can offer.

Has anyone had any experience in asking for second opinions regarding risk-reducing surgery?

Thanks

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Hi Hayley

I can’t answer your question directly, but I thought I’d share my similar story just in case you find anything of value in it - even if it’s just “I’m not alone”.

I had a risk-reducing bilateral mastectomy in January, but we started talking about it last March. I was pretty devastated it had come to this, tbh - I’ve spent many years in denial, I think! I, too, was casting about for second opinions and had exactly that same thought: is this treatment suggestion best for me, or just best they can offer (either at my hospital, because it’s NHS not private, or because of covid).

Turned out my work’s health insurance had a second opinion option, and I thought why not? Amusingly, the doctor they referred me to at the private hospital… was my same surgeon/consultant I was with via the NHS! I realised at that point that actually I did trust him (he did my surgery 5 years ago, too), which really helped come to terms with the decision. I think I was just looking for anyone to tell me I didn’t have to make this awful decision.

After realising I really did have to do this - well, not ‘have to’, but very definitely should - I got quite freaked out over the whole implants thing. It really helped making the surgeon explain why he’d chosen implants and not own-tissue reconstruction - suddenly it was less “I’m not getting options” but some very calm facts on why it would be better for me. I think sometimes they forget that we don’t always have all the information.

Three months on, and I’m … I’m not going to say happy, it’s awful that any of us have to go through these things at all. But given the various alternative routes, I think things have worked out about as well as they could have.

Is there any specific information you feel you’re lacking, that perhaps some of us here could help try to fill in? I’ve sometimes found the medical staff are reluctant because they can’t give you definites - so much is so dependent on so many factors - but it might be worth getting some other positive stories.

Overall, though, I think you’ve already made the hard decision and huge kudos to you for it. Whatever happens next, you’ve taken a huge step in protecting your health even though it’s such an awful choice - and if you can face that, then you can face anything!