Mastectomy - what are my rights?

[Daxaki]

I have a very fast growing tumour in one breast which the consultant indicated is likely to be a rare variety. I'm waiting to hear my full diagnosis but it's likely I may need Mastectomy. My mother had BC though is BRCA1 / 2 negative.

I feel strongly that if I do need a Mastectomy for treatment I would also like to have a preventive Mastectomy on the other breast, partly because a rare cancer may be less predictable so it's harder to determine where it may spread and partly because frankly, I don't want to have one tit as they're larger than average so I worry about the negative self image.

My question is, would the NHS provide a double rather than single Mastectomy under these circumstances?

So sorry to hear what you're going through
No experience with this but I think that it is likely that they would agree to a full mastectomy preventatively due to the uncertainty, and by doing so could save thousands if it did happen to spread there and therefore needing to do another op (which is how the NHS is likely to look at it!)

Thank you for the reply.

Yes, I was hoping they'd view it as a future saving! But if there's no indication it could affect the other breast then I'm not so sure? Do you think the body image argument would hold any weight or not? It is a genuine concern and the idea of having one breast is upsetting.

I think they should take it all into account, with any risk of it spreading or reoccurring there it would definitely be worth it, and they should appreciate the body image concerns and try and support you as you have enough on you plate to worry about than then refusing a double mastectomy! Have you spoken to your team about when they'll know? It may well be that they suggest it themselves as a preventative measure before you need to a lot of the time there's also no indication of any type of cancer spreading but it can happen unfortunately so they might think of it as the best option especially if you'd prefer it!

It's very unlikely they would refuse. I'm afraid it's a bit of a postcode lottery though. I had a hysterectomy for preventative measures. I expected them to refuse but thankfully they agreed and did it within months. Same with when I requested a c-section. In my experience they often do what the patient wants.

My mother is in a similar situation and has been told they'll be offering breast reconstruction when she has the mastectomy. Would you consider that? I do think asking about a double mastectomy could be a good idea too.

My colleague asked for preventative mastectomy plus preventative total hysterectomy, she had no issues in getting this and is now in the final reconstructive stage. Her mum had BC too. Discuss it with your consultant who im sure will be happy to take your wishes into account. Good luck with your journey x

Furry

That all sounds very positive, I hope it turns out as well as that

AtSea

That's very interesting to hear you think it can be a bit of a postcode lottery! Perhaps I will try another hospital if the outcome isn't looking too positive at this one.

In my experience they often do what the patient wants.

I hope you're right! I've usually found them very resistant, except when myself and my DC were in ICU years ago.

Pragmatic

Sorry to hear about your mother.

breast reconstruction when she has the mastectomy. Would you consider that?

I'm still considering options. If I could only have single mastectomy then I would certainly want a reconstruction, but if I managed to get the double mastectomy I think I'd opt for reconstruction if I could have it immediately with implants but would be much more hesitant if it needed to be delayed reconstruction or using my own body fat.

I have a complex medical history and I'm quite nervous about having two wound sites for the own tissue procedure and I'm also nervous about the pain involved with the tissue expanders for the delayed procedure. I think if those were the only options I'd opt not to have reconstruction.

The worst scenario would be having to have a single mastectomy and delayed / own tissue reconstruction. I really hope it doesn't come to that!

Sorry for rambling, I'm not thinking very clearly!!

SIB09

That's really good to hear!

I had a single mastectomy five months ago and was told that I could have prophylactic mx on other side if I chose too, even though my diagnosis suggested minimal risk of cancer recurring on that side.

labradottie

How are you feeling now 5 months later? What would you say the healing time was?

Glad to hear you were given the option.

Hello, I had the diep reconstruction. Healing from the mastectomy and lymph node removal was much faster than the stomach wound. But I would say at three months I was completely back to normal with full range of movement in arm reach etc.

Now ready to think about nipple reconstruction and small amount of lipo to even out the reconstructed breast.

Labradottie
Thanks for letting me know about the timeframe.

Hope everything works out well for you.

Just to update, mostly for anyone else looking for the same info as me:

I saw a private surgeon who has referred me to his NHS team because I'll need neo-adjuvant Chemo. He said that he would be happy to perform a double mastectomy rather than single but in the unlikely event that I have any difficulties getting this on the NHS he will perform this for me privately.