Forum Discussion

boysmum's avatar
boysmum
Member
21 days ago

Bilateral mastectomy + SLNB + TAD

Hi everyone,

I'm having a bilateral mastectomy in two weeks, and while I've been getting information from my medical team, I know there's so much that only people who've been through it can share.

If you've had a bilateral mastectomy, I'd really appreciate hearing about your experience. Looking back, what do you wish you'd known beforehand? What should I realistically expect during the first few days and weeks of recovery?

I'd also love any practical tips, such as:

  • Things that made recovery easier.
  • What you recommend doing before surgery to prepare.
  • Items you found helpful to have at home or in the hospital.
  • Advice for managing drains, sleeping, showering, getting dressed, or moving around.
  • Things that surprised you (good or bad).
  • Any emotional or mental health tips that helped you cope.

I know everyone's experience is different, and I'm not looking for medical advice—just personal experiences and practical wisdom from those who've been there.

Thank you so much for taking the time to share. Reading your stories and advice means a lot as I prepare for surgery. 

4 Replies

  • Have you had your surgery yet? I had mine on the 14th and found I took too much to the hospital as really only relied on wet ones for cleaning as was not allowed to have a shower and when i could it was really only a spot wash to avoid getting dressing wet.

    So clean undies, good quality pjs that’s were button ups and track pants and button up shirt good easy slip on joggers (as hospital would not allow thongs or anything that would be a trip hazard) I was only in hospital for 2 days with a double mastectomy and that’s only because my blood pressure was slow low

    kept me in extra night.

    I just wanted to have a good wash and clean undies and bras and then easy wear clothes once leaving, I wanted to brush my teeth and hair and everything else could wait until I left the hospital. 
    If I had one suggestion is that the wards are so loud so earplugs would have been good but then again I was are constantly getting checked by nurses due to blood pressure that it might have been more hassle.

    don’t be nervous, trust your professionals and have a good sleep. Recovery started when I got home and dealing with the drains and pico dressing was the most challenging but give it a bit over a week and you start feeling semi normal

    have a couple of good Drain bags - I was given some from the amazing volunteers who whipped them up on their sewing machines. Those kind volunteers are life savers.

  • Sorry to see you joining us here, boysmum​ , but you've come to the right place for support & 'lived' experiences. xx

    Are you having reconstruction? If 'yes',  you could join the Choosing Breast Reconstruction, Here:
    Group: Choosing breast reconstruction | BCNA Online Network

    If not having reconstruction, ask your surgeon about an 'aesthetic closure' for the tidiest result - and you could also join the Flatchat group, here:
    Group: Flat Chat - no breast reconstruction | BCNA Online Network

    Both are PRIVATE groups and you can ask ANYTHING in complete privacy - NO-ONE else can read those posts, unless they are a member!  Both groups would have info that may assist you at some time or other as you go thru your surgery & ongoing treatment xx

    It can be a very emotional time too, before, during and after surgery & treatment ..... so if you feel yourself getting sad, angry or concerned about how things are going - have a listen to Charlotte Tottman's podcast on her own Breast Cancer story.  She is a specialist Breast Cancer Psychologist who had a double mastectomy about 5 years ago.  She was quite surprised at just 'how much' it affected her both mentally and physically, as she'd been helping ladies for decades .... and then experienced it all herself!  The podcasts are very easy to listen to & most members find them very helpful.  There are 2 seasons - start off with the first one here (What You don't know until you do Welcome):
    https://soundcloud.com/bcna

    You can also call our Helpline here for a confidential one on one chat:
    1800 500 258

    Also, check out this post, that has a wealth of information in it - tips on what to take to hospital (front opening pyjamas, for example! And don't forget the charging cords for you phone/tablet if you take one with you! ) 
    Cooking & freezing your favourite meals over the next 2  weeks, will definitely make it easier for you when you get home & may not feel like cooking!   
    Maybe Consider moving the things you use EVERY DAY that are in high cupboards or low cupboards onto the bench (Coffee/tea/sugar/coffee mug, favourite saucepan etc) so you don't have to reach for them for the first week or two after surgery (or until your Surgeon or BC Nurse say you can reach up/down.) 
    A big welcome to all New Online Network Members ..... | BCNA Online Network

    Good/Bad things .... almost everyone has a 'bad day' sooner or later where 'the wheels fall off', no matter how small the reason - it is totally NORMAL xx .... Mine was losing a beautiful 'guardian angel'  pendant whilst I was having radiation (a loved friend had given it to me .... and it just broke me.  I couldn't stop crying.)  Just know that there MAY be bad days .... but with good family & friend support you will get over the hurdle xx  (plus support from us at BCNA - as you can raise ANY issue without fear of rejection xx. As we've ALL BEEN THERE!)
    Another 'thing' I discovered was that a lot of people don't know how to handle the news that you're not well & will need surgery & ongoing treatment - they don't know WHAT to say - so they say NOTHING!  (And sadly, that hurts you even MORE!) 
    Also - it may surprise you 'who' steps up to the plate and supports you the most - quite often, it is not the person you think it will be! 
    Just Be open minded and try not to take it personally ... as it DOES hurt xx

    Keep a little diary going re your mental health & physical concerns .... the ups & downs, so that when you see your medical team, you can raise the issues, if they are still a concern for you.  Better still, you should be teamed up with a Breast Care Nurse (usually after your surgery) - and they will become your FIRST port of call for accurate information on any of your concerns. 

    Try & keep your sense of humour going - as you'll need it!  We have a 'Funnies' page and a 'Wise Words' thread for some laughs and/or inspiration
    Wise words .... | BCNA Online Network .... feel free to add any that you love! xx

    After my surgery, I found that a small 'long' cushion was essential to rest my arm on, as it didn't like being 'flat on the bed' immediately after surgery.  (8 years later, I use it under my head when I read in bed!)  

    Wishing you all the best as you approach your surgery - take care xx

      • arpie's avatar
        arpie
        Member

        I was a nervous wreck when dropped off for my surgery - a bit weepy too ... but I was fine once 'in my room' and following the surgery later that day - it was as if a weight had been lifted from my shoulders xx

        Keep yourself as busy as you can in the lead up to going to hospital, doing things you LOVE doing to keep your mind off things!!

        Maybe start putting all your bits together to take with you - phone/charger, tablet/charger, even a light cardigan to wear sitting up in bed as they don't crank up the central heating in hospitals ...
        Take some Sudoku or other puzzles (as it is almost impossible to read anything like a book with all the goings on in a Hospital - too many interruptions!) and definitely take Ear Plugs and Eye Mask for sleeping! (They are noisy BRIGHT places!) Button up front PJs .... warm slippers ....

        You'll be 'right' xx