Big decision!

Due to family links with BC and my genetic counsellor advising that the gentic link is not strong enough to provide evidence to categorically say I would be carrying the BRCA1/2 gene I have ‘chosen’ to have bilateral mastectomy with reconstructive surgery. My husband has just had a heart operation and my sister is currently in treatment for secondaries in lung, breast and neck.

Having made the decision to have the procedure I am now researching what is available to wear during and after the operation, both in terms of underwear and nightwear.

Can someone please shed some light on what life will be like when I first return home in terms of getting around, dressing/undressing, sleeping, lying down etc? I’d also be interested to know how you prepare mentally for having an operation of 10 hours duration and the hours immediately following?

If anyone has had to make this decision without having actually got/had BC I would be very pleased to hear from you and hear your experiences.

Shelley

Hi Shelley
I haven’t had reconstruction but after my single Mastectomy I found these pillows fantastic to “wear” under my arm for sleeping and relaxing. Here is the web site. wwww.paradisepillows.co.uk.You need nighties or in my case pyjamas with buttons down the front and if they are nice enough as mine were, I wore them during the day at home as they were so comfy.Hope that helps a bit and good luck xx

Hi Shelley,
It’s a brave decision you’re making, but one I think is perfectly reasonable. I had bc in one breast and was advised to have a mx, and although I’ve not been gene tested, I have a strong family hx and made the decision to have bilateral based on that and my lifestyle. I decided that whatever the result, I’d feel happy with my choice and remind myself why I made it. In the end, I did have abnormal cells in the healthy breast which are another risk factor.

I had bilateral mx 8 march, no recon. I can’t help with the recon, but the mx itself is quite debilitating for a few weeks. Initially I was unable to move much, and couldn’t sit up unaided. I spent 2 nights in hospital (think you’ll be longer with the recon) which I really needed. Once the drains were out, I was able to move a little better.

Once I got home I found I couldn’t do very much, although I felt ok initially and then did too much - the swelling and immobility worsen after a week or so, then you realise you need to take it much more easy. Simple things like filling the kettle were not possible as I couldn’t reach out and hold a weight (even a small one!). After a week or so I improved a bit, a lot after 3 weeks, then I began to feel much fitter all round after 4-5 weeks. I did the exercises given, I was very immobile initially but the exercises really helped to gradually loosen things up.
I slept on my back semi-sitting for 5 weeks or so, with pillows under my elbows as I couldn’t drop my arms back (you’ll know what I mean once you try!). I think a lot of people like the v pillows for that reason but I never got round to getting one. If you sleep almost sitting, it’s much easier to get yourself up.
List of useful things:
Front buttoning pyjamas (M&S have great selection on line)and shirts, you can get things over your head just about, but it’s a real struggle initially.
M&S post surgery secret support cami tops (on line only I think)-fantastic and comfortable, not sure about with the recon again I’m sure someone else will tell you.
Silky cami tops for nerve pain (again, I don’t know how this affects the recon people, but for the mx you get nerve regeneration pain which is exacerbated by clothing touching it. It goes usually after a few weeks).

Overall, it’s not as bad as you think it might be, though it isn’t a walk in the park obviously. My main advice is to really take it easy and be kind to yourself. I’m now approaching 2 months post op and am swimming regularly and feeling pretty good. I still have some swelling etc and a bit of pain here and there, but I’m not far off normal now!

Lots of luck with your op, you’ll get lots of support on here.
xx

Hi bubbletrouble,
Thank you for sharing your experience with me. I hope you are feeling much better now?

I’m told I will be hospitalised for about 5-7 days depending how I respond. I had an abdominal hysterectomy 10 years ago and the hospital staff had difficulty keeping me still. I was revising for exams whilst in bed and shopping on the way home once discharged. However, my plastic surgeon has said like you, ‘this won’t be a walk in the park’. I’m not expecting it to be but personally, I deal with things better if I know what to expect, apart from too much surgery information.

I have to make lots of arrangements as I am the main carer for my husband and like I said, he has just had heart surgery two weeks ago and doesn’t deal with anxiety very well.

The ‘V’ pillow you mention we have but I will look around for a newer one and I will be researching the M&S stores/net to see what might be suitable.

I’m not one for being immobile or dependant upon others so I expect the frustration will get to me quite quickly.

It has just come to mind, I will be having a mini tummy tuck in the process so we will have to put the dog into kennels for awhile - We have a 6 stone Rottweiller X Labrador and when she gets excited nothing stands in her way! She also gets confused and thinks she is a lapdog so that won’t be ideal:(

Will there be any nurses visiting once home? I’m wondering what dressings will be over the wounds?

Have you decided against reconstruction or is this something you may have at a later date?

Take care,
Shelley x

Hi Lynberi,
I have had a look at the website you mentioned, the pillows certainly look comfortable. Have you tried the Aloe products? I was wondering what the position is regarding spray deodorants? I hadn’t thought about that. As I have recently started to experience ‘hot flushes’ the rate at which I persperate has increased and I don’t think the Aloe products would be much use to me. I’d be interested in what others thought about this.

The pillow is a good idea for under the seatbelt strap. I will be pulling my hair out not being able to drive for ages.

I know its the right decision for me but I hadn’t thought through the sacrifices I will have to make temporarily :frowning:

Take care
Shelley x

Hi Shelley,
I’m feeling pretty good now thanks. I’m an outdoor person and I have a large, cuddly labradoodle who I took out after a week or so, but I did get pulled when I put her on the lead and a dog came over to jump on her, no major damage but it didn’t half hurt for a few hours!
Re caring, I’d ask about some help for that because you just won’t be able to do stuff, you need someone to care for you especially in the first 2-3 weeks. If you do too much you’ll really suffer for it. The GP should be able to sort something for you and your husband. I resigned myself to not doing too much, and got loads of books to read, DVDs etc. I also had a siesta every afternoon for the first 3 weeks, I really needed it and it helped a lot. It was very boring, but has to be done unfortunately.
Dressings depend on where you are I think - my surgeon uses opsite which is clear plastic and you can see the wound underneath. Other places use more traditional dressings. I think 1 week with them on is usual, though sometimes they stay for longer and I’m not sure about the recon again - possibly they use special dressings for that. You won’t be able to drive, so I guess you can ask for a community nurse to visit you (again via GP).
Deodorant is difficult, as the scars come close to your armpits. I’ve been using aluminium- and paraben-free for ages now because of their potential links to bc. I use the Body Shop one (they sell some that aren’t so be careful) there’s a stick and a roll-on, both very good. I didn’t use any for a couple of weeks because the scars were not healed and I didn’t want to risk upsetting them.
As for recon, I decided against it after a couple of weeks of research once I’d been told I needed the mx. It’s a tough one, but I didn’t want to compromise my fitness at all. I do lots of outdoor stuff, and also have a job that requires a high level of strength and fitness. Because I had bc, there was no way of knowing whether I’d need more treatment till after the mx, so wasn’t prepared to risk that either. I’m ok with it, though I know it’s early days. I can go breast free with no problem, or can wear breast forms if I feel like it (it’s only really important for smart clothes that are fitted). I even go swimming in the local pool in just my speedo which I thought I’d never do!
Lots of love, xx