About to have double mastectomy no reconstruction - any tips?

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SF73
SF73 Member Posts: 4
edited October 2023 in Newly diagnosed
Hi All,

I have finished 5 months of chemo and next step on 1st November is a double mastectomy and R lymph node clearance, I have chosen no reconstruction.

I was just wondering if anyone had any tips for the hospital visit and recovery time? Anything you would have liked to know beforehand?
I have just gone and bought a couple of button up PJ tops and a few button shirts for home.

Thanks :)

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  • Afraser
    Afraser Member Posts: 4,388
    edited October 2023
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    Hi @SF73

    Good luck with your surgery. I only had a single mastectomy (no reconstruction) but had an axillary clearance (17 lymph nodes). I experienced very little pain with the mastectomy, my hospital was very keen on pain medication which is really good if you need it. Ultimately they were fine about my not doing so! You will have fluid drains for a while and may even be discharged with them so finding a useful way of carrying them around (small bags slung from the shoulder, for example) saves a lot of frustration or tripping over tubes. I only had them for a few days so deep dressing gown pockets worked well.

    If you are fussy about tea or coffee, take supplies! Most hospital issue is horrible. I had exercises to do to improve arm mobility - there’s a fair bit of digging around for lymph nodes and your underarm may not feel as if it belongs to you at all for a while. I don’t know if a double mastectomy needs any additional care but I found the exercises easy, and had excellent mobility in my affected arm in a few days. If you can walk around somewhere or even sit outside, it’s good for you. Otherwise books, puzzles, music, whatever you prefer to fill in time, especially in the evenings (hospitals like very early evening meals!). 

    Best wishes for a speedy recovery.
  • arpie
    arpie Member Posts: 7,687
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    So sorry to see you here @SF73, joining the club no-one wants to join!  :(   Well done on finishing the chemo - I hope you didn't have bad side effects xx

    Feel free to join the "Flat Chat'' group - which deals with all things 'no reconstruction' ... with pics & tips.   An 'aesthetic flat closure' can actually look really cool.  I caught up with a buddy on the weekend who had the double, flat - and she showed me hers & I showed her mine (lumpectomy) and I wish I'd asked if I could take a pic, as hers was SO tidy.  She requested of her surgeon for 'no tags or dags' (ie unsightly bits) and he delivered. 

    Jump onto this thread & it covers a lot of areas on the forum - including what to take to hospital - those front 'do up' PJ tops will be great!!  We show off our furkids, art & craft, our gardens - and even get some laughs with the jokes!!  There are 'tick sheets' that you can fill in, to self asses yourself as you go thru your recovery xx. Take a copy along for your team to check out as well.
    https://onlinenetwork.bcna.org.au/discussion/23477/a-big-welcome-to-all-our-new-members#latest

    I only had a lumpectomy - but my top tip is to NOT let the pain break thru after the surgery & when at home.   Keep the painkillers up to it, at the dose suggested. xx. Oooh - and take  earplugs AND an eye mask to the hospital with you, as they are noisy bright places & you'll NEED your sleep!!  Do the exercises that you are advised (don't OVER do them, or it may set you back ....) and accept ANY help that is offered to you from family & friends - be it mowing the lawn, meals or taking the kids on 'breaks' - so you have the best recovery.

    Have you been assigned a Breast Care nurse yet?   Ask them about a Zonta Cushion .... when you go home, your arms may be more comfy at night if they are supported in bed.

    Ask away, ANY questions - remember - there are NO silly questions.

    take care & all the best xx
  • SF73
    SF73 Member Posts: 4
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    Thanks Afraser and arpie, for your welcomes and advice.
    I was surprised when my surgeon said only one night in hospital, I expected longer.
    I did meet a breast care nurse right at the beginning of chemo, I do have their contact details so will for sure ask them about that cushion.
    Thankfully chemo was bearable for me, lost my hair and had some horrible reflux a bit of fatigue, the worst was putting on 10kg!! I think I was boredom eating, right now focussing on tring to lose a couple of kg's before surgery.

    I have asked to join the  "flat chat" group.
  • arpie
    arpie Member Posts: 7,687
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    Terrific @SF73 ... you may need 2 cushions - one for each arm.  I know that my arm didn't like being flat on the bed for ages .... and now I use the cushion for when I am reading in bed to elevate my head that little bit!  ;) 

    All the best with the weight loss - I'd love to lose up to 10kg ..... but i hate dieting!  LOL And not too fussed on exercising either!   DUH! xx

  • TonyaM
    TonyaM Member Posts: 2,836
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    Hi @SF73,
    Best wishes for your up and coming surgery.I went flat last year and I had 2 nights in hospital- I think it’s needed.Ditto to everything above, take slip on shoes as you can’t bend down to tie laces.Really take it easy for those first 2wks post op as you are healing internally as well.Once the drains come out(1week?) you’ll move a little easier.A seroma is not uncommon after surgery and may need draining so don’t be alarmed.I wore singlets for a few weeks and then found some soft crop top type bras to wear with abit of soft padding.I haven’t bothered with prosthetics. This will be individual and all trial and error.I was abit surprised seeing my flabby stomach without boobs! I was driving and feeling pretty good by around 3weeks.Mentally though,I think it took me 6mths or so to adjust and feel ok with myself.I joined a Fb group called Flat Life Australia and they are so supportive. We have a flat group here too but it’s not as active.I lived with one big breast and a prosthesis for 12yrs and I have to say it’s a lot easier to be flat.
  • Julez1958
    Julez1958 Member Posts: 1,153
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    Hi @SF73
    Everyone is different - which is what my breast care nurse said to me after I had a lot of pain after my mastectomy - I was on endone  for 6 weeks and I don’t normally even get a headache!
    Not to say that will be you but if you do get bad pain , take the meds!
  • Lispy
    Lispy Member Posts: 25
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    I suggest you do the exercises they suggest- I was pretty bad at doing them and my arm movement is still not great years later. I’d also pay for some shampoo and blow dry sessions. 
  • SF73
    SF73 Member Posts: 4
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    Thank you TonyaM, Julez1958 and Lispy for your helpful advice :) I am taking everything onboard, I was determined to try to get a bit fitter and lose a KG or two before surgery, but really bad plantar fasciitis has put a stop to my walking and going to the gym :( my dog isn't happy about the lack of walking. I guess I will just try again after surgery and recovery.

  • Julez1958
    Julez1958 Member Posts: 1,153
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    Hi @SF73
    I lost a couple of kilos in hospital from my bad reaction to the anaesthetic and pain meds - then decided when I got home to get healthier with my diet - cut out food and  drink with “ empty” kilojoules ( goodbye soft drinks , cakes, chocolates, takeaway junk food like McDonald’s) and ramped up my consumption of fresh fruit and vegetables  Also fresh  fish and lean meat and poultry.’
    It was hard at first but then I lost more kilos and felt so much better.
    Are you a swimmer?
    That’s also great exercise and weight bearing exercises are important when we get older - Pilates is another great option.
  • SF73
    SF73 Member Posts: 4
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    Thanks Julez1958, my diet has always been pretty good, not too much to cut out, I think my biggest problem has been boredom eating and lack of exercise. No, I don't swim, I used to mountain bike ride, so plan on getting back to that as soon as possible - except none of my riding gear fits me now!
  • Broccoli
    Broccoli Member Posts: 16
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    Hi there SF73, I'm just about on my 12 month DMno REcon anniversary. My tip is to allow yourself to be. That is, you don't really know how you will feel afterwards. I went in cracking jokes and saying I really don't need my boobs theyr'e just useless appendages, but afterwards I was really sad, and it shocked me. I think you need to allow yourself to mourn if that's how you feel. DOn't hold it back. However, you may feel a lot of relief so just go with the flow.
    IF you don't want to see anyone for a couple of weeks, allow yourself that time. We don't get a medal for doing too much and being everything everyone else wants and expects.

    Listen to Charlotte Tottman's podcasts, and yes, looking in the mirror for 5 minutes a day does help.

    I had this weird thing afterward where I could not stand anything touching my skin, I just wanted to be naked and couldn't be. Someone on here suggested putting on something completely counter intuitive - a tightish skivvy figure hugging. And wow, it was so relieving of that feeling.
    Drink heaps of fluids.
    Don't worry about your weight. I actually put on 8kg after without changing my diet at all which was super healthy as I also have MS. Your hormones will change, or maybe it was a coincidence of menopause for me, but eventually you will overcome any of that.
    If you get swelling in your arm pits, or your upper arms, seek lymphodoema massage early. It really helps.

    For encouragement I would say that although I  felt like I had gone through a hedge backwards a few times, and I also got covid after my op, 6 weeks later I went on a trip to Europe with my husband and daughter and managed to enjoy myself most of the time, just had to rest up more than them. So you can look forward to recovering, it will happen.

    Take care of your hands. If you get cuts then your arm pits seem to get swollen.

    Go well.