Family history mastectomy dilemma

[HopeNstory]

Hi, I'm currently being assessed for a risk reducing double mastectomy due to family history of breast cancer (not BRCA- they are not genetically testing me as surviving family member has declined) and lifestyle risk, putting me at 50% lifetime risk. I'm 40 and opting to 'go flat', so no reconstruction.
Is there anyone that has gone through this purely based on family risk rather than genetics? And have people had any physical repercussions from double mastectomy, such as reduced range of movement in arms, shoulders or long lasting pain, etc. I'm just trying to weigh it all up, so any advice would be helpful.

[soniamumsnet]

Hi @HopeNstory just bumping this for you, and hopefully some helpful Mumsnetters will be along soon with some advice.

[curious79]

Hmmm... I thought the law changed so you could be tested even if surviving family member declined?! I would challenge that
There are loads of risks attached but depends what surgery you have and size of boob to start with, if with implants, if take out lymph nodes etc ....

[ekidmxcl]

Going flat is the way forwards imo. Quicker recovery, less aftercare needed and fewer complications. My mum had this (single) mastectomy (cancer present) and she was back to normal with no ill effects very quickly. BC is truly evil and I wouldn’t hesitate in your position.

[BadBadBeans]

Ooo hello; I had a double mastectomy due to BRCA and went flat. DM me if you would like more info as some of the details are outing, but I have full range of movement and have found the whole thing surprisingly and pleasingly unpainful.

[lawandgin]

Hi @HopeNstory no experience of familial risk, but my Mum had a single mastectomy last year and has suffered terribly with her shoulder - pain and reduced movement. I still think she'd take that over the cancer/cancer treatment, but it can be quite debilitating.

[curious79]

The people saying ‘go flat’ in fact mean ‘go concave’. You would literally have a massive dip in your chest.
I had a prophylactic double mastectomy, nipple sparing, with implants, in July this year. My boobs now look fantastic. Yes already. I only have scarring over the top half of my nipple (excellent surgeon - private, London Breast Institute, Nottingham Place, cost £25k all in). 1% infection risk at the LBI, 15% across NHS. Implants are fine textured which reduces risk of hardening. I was working again within two weeks. My sister had double mastectomy op at the Marsden about 3 years ago- she was in chronic pain, had an infection which knocked her for six for 4 months plus she has terrible scarring, though no shoulder pain or long term pain.
Neither of us had lymph’s removed - that increases risk for of lymphedema and apparently also is very painful.

[Badgerstmary]

Hi, I hope you’ve got some answers. I don’t suppose it’s ATM you have. I’ve just had a test & am waiting for my results.