I have had a double mastectomy without reconstruction AMA

[Booblessbeauty]

I had both breasts removed last year after a breast cancer diagnosis. I have turned down any and all reconstruction and am enjoying my unencumbered life. I will answer questions, but might not return to MN until morning x

So sorry to hear that you have been through this. How were you diagnosed and what symptoms did you have or was it caught at a routine mammogram?

I am awaiting brca gene testing results and will choose preventative surgery if positive. Please could you tell me what type of breast cancer you had and how your recovery from your surgery was? Thanks

Can I ask your reason for not having reconstructive surgery.? I had a single mastectomy 4 years ago and honestly don't think I can be bothered to have more surgery so I've been walking around with 1 tit ever since. 😀

Firstly I’m so sorry you had to go through a cancer diagnose and all of the repercussions. How are you feeling? What made you decide on a double mastectomy? What made you decide to turn down reconstruction? Are there any decisions from then to this day that you would make differently with hindsight? If with the NHS how was your experience in terms of kindness and empathy from staff. What a wonderful human you are to take time to have posted that, I wish you the absolute best in life going forward.

No questions but wanted to say I also decided against any reconstruction following my bilateral mastectomy in 2012 for exactly the same reason as OP. The feeling of freedom is amazing

It was diagnosed when I went to the GP because of a shingles rash that wouldn't clear up. There was a tiny lump too, which I thought was shingles related, but was cancer. I went for a mammogram which showed a large tumour

Thank you for this AMA! I’m nearly the same age as my mum when she had breast cancer - early, at 40 - so I’ve have been thinking about the “what ifs” assuming the same occurs for me. Assuming I develop it at some point, I have a strong preference for the same treatment you had - bilateral mastectomy and no reconstruction.

Please could I ask, was your cancer in both breasts, and if not, did you have any difficulty getting the nod to have both removed? And did the radical nature of the procedure affect the level of chemotherapy if you had it?

Thank you again. I’m glad to hear you’re doing well - and love the “unencumbered” aspect of your post! x

Oestrogen positive, grade 3 stage 3.

Recovery was slow and steady. One side was painful, one side was completely painless ( no, I dont understand that either) I was in hospital 2 days, then came home with drains in for 2 weeks, which I hated. Once the drains were gone and physiotherapy started, I was quickly back to more or less normal, although I was careful of the scars. I had no complications with swelling, or infection. Is there anything else specific you would like to know about recovery? From what I remember, I could go for a walk to the shops, within a few days ( even with the drains in my handbag). I could not reach my arms up high for many weeks, which meant other people had to draw the curtains for me mornings and evenings for a while

Reasons are largely that is is further invasive surgery, and it might not work, and I am perfectly happy without tits!

If you would like to meet more uniboobers have you come across the facebook group "flat friends"?

Thank you very much, that is a kind thing to say.

Yes, this was on the NHS

The staff I have met have 95% been caring and empathetic.

I did have some difficulty with persuading surgeons that no, I really did not want reconstruction. I was repeatedly asked if I had changed my mind, and still would be able to ask for reconstruction if I wanted it- but I dont.

I am beyond the age of breastfeeding, and boobs serve no useful purpose in my life, beyond making me the right shape to wear smart dresses - which I can do with false boobs in a bra if I choose to.

I chose the double mastectomy to reduce the risk of reoccurrence, and for symmetry

No, no regrets

hello fellow flattie! 🙋

I had no difficulty in getting both removed, as it was my preference from the start. I have heard of women who have a single mastectomy later on deciding they want the other side done too, and having difficulty getting accepted at that point, when it might be considered cosmetic. Getting both done together is easier, I think

I dont know if I would have been offered less chemo or more chemo if I had had a different op - I think most of my friends who just had lumpectomies just had radiotherapy, not chemotherapy. I just accepted whatever I was offered, on the grounds that I wasn't leaving my family voluntarily, and if I died, I, and they would know I had done everything possible to stay alive

sorry, I realise I didn't fully answer your question - the cancer was only in one breast, but there was quite a lot of it

Hey I’m in exactly the same position! During a recent check-up, I was reminded I could still have reconstruction if I wanted it. I confirmed I wasn’t interested the Dr’s response was ‘Fair enough - I can see you choose life!’!

I am happy with my decision but it’s still a bit weird feeling my ‘bones’ - is it the same for you?

yes, and my scars are not very symetrical, so I can feel them more on one side than the other.

Weirdly, I can still frequently feel phantom boobs swinging round, and banging into my arms. The phantoms disappear if I pat the scars

I just found and joined flat friends! Thanks OP.

I agree that once you've done your breastfeeding, tits just get in the way really - unless you've got gorgeous little pert ones which I never had anyway - mine were somewhat matronly!

@Booblessbeauty thank you for taking the time to reply! ❤️

It’s reassuring to hear you were able to choose to have them both off, instead of only the affected one, and didn’t have to fight to persuade a medic to listen to your preference. Most of my experience whenever I’ve had to be a medical patient has been of having to fight to be listened to, or of having my long-considered preferences dismissed. I’m glad to hear you were taken seriously, and hope that if my own time comes, I will get taken seriously too.

Thank you again for sharing your experience, very best wishes to you - and I hope you have a lovely long and happily bra-free life 😉 x