Double mastectomy what to expect no reconstruction

Faith123 Member Posts: 7
Can any lovely ladies who have had a double mastectomy please give me advise on how best to manage after my operation due June 29. Does a ice pack help, when and what bra to wear. Recovery 1,2,3,4,5,6 months? Pain levels, twitching nerve damage 1 year , 2 years?
once biopsy done an oncologist get assigned to your case and the hormone drugs get dispatched? How do you know all cancer removed no radiation on offer. Does that mean if radiation was offered it would be too close to the lung area and would damage lung as my cancer was on the right side.



  • AllyJay
    AllyJay Member Posts: 943
    I had a double mastectomy with axillary node clearance on the left and sentinel node on the right side. I had chemo first, 4 X AC followed bt 12 X Paclitaxel and Herceptin for just under a year. Ideally, I should have had radiation as well, but due to pre existing medical conditions, (scleroderma and interstitial lung disease from that), I was not allowed as the risk of further damage was too high. I had complications due to my other medical issues, but I can give my experience on some of the questions you ask. I had a very tight surgical chest binder post op to help prevent bleeding as I have to be on blood thinners which had to be re started the day after surgery, so I never had an issue regarding bras. I had very little pain as such, more discomfort and restricted movement as well as trouble taking deep breaths due to the binder. Regarding nerve damage, I experienced more of a feeling that my chest had been severely sunburnt, and the slightest movement of fabric on the area felt like beach sand on the sunburn being rubbed off with a rough towel. I found (after the binder was finally removed) that wearing a tight t shirt which didn't move over the skin, was the most comfortable for me. I did, and still do have restricted movement of my shoulders, but I already had problems with them before this whole shitfest anyhow. This was all pre covid, in 2016 and 2017 and I found doing exercises at my local aquatic centre in the warm water very helpful. I started letrozole about a month after surgery. Good luck with your treatment, and I hope this reply has been helpful to you.

  • Julez1958
    Julez1958 Member Posts: 1,111
    Hi there
    I had skin sparing mastectomy with insertion of tissue expander and delayed reconstruction after radiotherapy.
    I had a lot of pain from the mastectomy but it was mainly from the insertion of the tissue expander - my surgeon said if I had just had the mastectomy and gone flat the pain and recovery would have been much simpler.
    Every surgeon seems to have different protocols and if you have a breast care nurse ask  them all these questions if you can.
    I didn’t have to wear compression garments at all but as I went from an E cup to a C cup I just got around with a snug fitting singlet for  the first 4 weeks.I then got a couple of very soft slightly padded bras.
    I was recommended radiotherapy even though I had a mastectomy and no cancer in my lymph nodes due to the size of my tumour - it’s unusual to have radiotherapy after a mastectomy although it seems to be generally recommended after a lumpectomy.
    All the best with your treatment and there are a lot of resources on this website.
  • Ausmum2
    Ausmum2 Member Posts: 57
    Hi @Faith123
    i had a double mastectomy (no reconstruction) with sentinel node clearance in March 2021. I’m a TNBC so had 4 cycles of AC and then 12 of Paclitaxel and 5 weeks of daily radio (all nodes on right including centrals and up into throat- so a big dose). 

    Post surgically my pain was beautifully managed. I didn’t have ice packs as they cut the nerves during surgery so sensations  are not all that strong (well they weren’t for me). I also had two drains on each side. 
    The biggest tip I got, which was amazing, is “button up front everything” and “two pieces”. It’s because of the drains and because you can’t raise your arms. I gave up bras the day I had surgery. Haven’t worn one since :):smile:
    (I do have one with “fillers” if I “want boobs” so far I haven’t felt the need). 

    Recovery went pretty smoothly, I have pain relief for home. I did have a recurrent seroma on the non- cancer side. A known outcome for the surgery. But that has now settled after intervention and drains etc. 

    the biggest “surprise” for me was the sensation of having a big rubber band across the front of my chest, post surgically. 12 + months later the sensation remains just “less tight” and it will settle more I suspect but I also suspect it will be there in some form forever (it’s those nerves that are no longer there). It’s been a blessing in some ways as when other treatment has been needed I don’t have any sensation ha ha. So whilst medicos apologise for wha they are needing to do, needle etc I don’t feel a thing. 

    Anyway, advice
    1. button up everything as much as possible (shirts, jackets etc etc)
    2. Two piece pjs 
    3. Everyone will want to check your former boobs and surgical sites so see above. 
    4. Waterproof dressings are the bomb diggity but they can’t get fully wet so a handshower is bliss. 
    5. Getting your hair washed is amazing (by someone at home - as raising arms is an issue- or at the salon to feel even better with a blow dry - it’s the small things). 
    6. I loved a shower chair as I did feel woozy. 
    7. Know you’ll have drains. A right bag and a left bag are awesome to carry them to the bathroom etc too. 
    8. The u pillows for under your arm are great to take the pressure off. Loved mine and used it endlessly. In bed, on the couch, in the car to keep the seat belt off etc. 
    9. Do your arm exercises that the physio will give you. Fun, no but gives good function. 
    10. Take the pain relief! 

    You’ll do awesome. 

    Rock it!

  • Faith123
    Faith123 Member Posts: 7
    Ausmum2 thank you. Great help you rock. Thanks heaps 

  • Fernweh
    Fernweh Member Posts: 65
    edited June 2022
    Hi! I am a happy flattie! I just finished chemo this week and had my double mastectomy with no reconstruction on 2 February 2022. All excellent suggestions about what you will need (don’t buy too much like me!) and comments above especially from Ausmum2! 
    My experience has been very good. I had virtually no pain. I had full range of motions around a month after surgery and feel light and back to my normal self minus boobs. I am gaining sensation back and my scar are nice.
    Everyone is different but all pain and discomfort CAN be managed and generally have a solution. 

    There is a lot of information online about reconstruction but not too much about staying flat. I am part of a few fantastic flatties FB groups.

    Message me if you want to chat about the surgery or being flat in general (I love it!) and can also send you the links to the FB groups if you like. 

    @Ausmum2 I am always happy to find another flatty! I hope you are feeling well and enjoying life.
  • Ausmum2
    Ausmum2 Member Posts: 57
    edited June 2022
    @Fernweh notes, definitely don’t buy too much!  I actually found mens business shirts in the op shop with leggings and boots (zip up, no pulling on ha ha) my “Best Buy” for post op recovery (I just cut the collars off to make them like a “grandpa neckline”).  Found a lovely batch of shirts for a few $$ 
    And I’m totally loving being a flattie too!  (I was a DD girl so my neck, back and shoulders also love me)!  I hope you are doing well too @Fernweh, for me the “mind bleep” of being out of active treatment has been quite something, but I’m doing really well and coming out of the treatment brain fog! 

    Go for it @Faith123!  I also cold capped so kept “enough” hair and I’m happy for you to message me anything also ladies. I had a good time with look good feel better (learning to draw on my eye brows helped me feel more human) and loved hijab caps (the bamboo cotton ones) to keep my poor winter cold head warm (I’m back with them as my big thing after treatment seems to be being freakin cold all the time). 

    It’s quite a ride but it’s totally doable. 

  • Fernweh
    Fernweh Member Posts: 65
    @Ausmum2 and you are in Queensland too! 😃 I am going to DM you!

    I am bald and looking a little like Jeff Bazos, but kinda loving that too. 

    @Faith123 you got this! 💪🏼
  • Ausmum2
    Ausmum2 Member Posts: 57
    @Fernweh knock yourself out babe :)
    No one warned me about chemo curls, so I sported a “poodle doo” for a while. Man that crap be cra cra, it’s  growing out now. Tots funny but a colour of grey I’m not sure I’ll get used too. Never ever saw myself as being in the “white hair don’t care” club but apparently here (“hair”?) we are 😏

  • Afraser
    Afraser Member Posts: 4,369

    My grey hair grew out with the frizz! It’s back again, this time it’s just ageing but my red streaks look good with grey so it can stay! 
  • Ausmum2
    Ausmum2 Member Posts: 57
    Awesome @Afraser I’ve “almost” given up on any colour returning. I was a “fair hair” with occassional “more silver” streak and its come back white white white (as in “people pay a lot of money for that pearlescent tone) colour. 
    I feel like it makes me look 10 million years old but I also can’t commit to a white regrowth line and 6 weekly dye job so guess I’m gonna get used to it  B)
  • Afraser
    Afraser Member Posts: 4,369

    Mine was chalk white frizz, I looked like a lamb - well, my head did! I didn’t care that much, at least it was mine. But as the frizz relaxed, the hair turned grey, then light brown. For a year or so, I had light brown hair and no grey, in spite of having quite a lot of grey before bc. It’s caught up with me again and as I can’t stand grey/white roots and don’t want to be at the hairdresser every week for touch ups, I’m accepting the grey with a vivid slash of vermilion! Can’t say my hair has been boring. 
  • Ausmum2
    Ausmum2 Member Posts: 57
    @Afraser never boring and Vermillion sounds delicious! 
    Everyday is a step into a “new place” isn’t it! 

  • Afraser
    Afraser Member Posts: 4,369
    Only way to be! Might as well have fun! 
  • June1952
    June1952 Member Posts: 1,826
    edited June 2022
    I think making fun of any bad time in our lives does help us women get through ....

    In the BC saga us making fun of ourselves certainly helps others to understand and accept the situation, they are often guided by our reactions.
  • Christabel03
    Christabel03 Member Posts: 80
    Hi @Faith123 :)

    I'm a happy partial flatty as well after a single mastectomy with no reconstruction in April this year. I am currently 6 rounds into 33 rounds of radiotherapy which seems a lot due to lymph node involvement.  I am really happy with my decision not to have reconstruction and I must admit the surgery was a lot easier to navigate than I imagined it would be when I first found out I would be losing my breast. I'm making plans to have my other breast removed down the track as well. 

    Pain has been almost non existent but the sensation has been strange, virtually numb but @Ausmum2 I think it was mentioned feeling like a tight elastic band across the chest and I think that is a pretty good description of how it feels sometimes. I did have to have a lot of physio after surgery to get my range of motion back in my left arm but I was expecting that. 

    The soft bra given in the hospital I think it was an Amonea brand I have bought myself another three and am living in them so comfortable and supportive for the other breast too. 

    I agree completely with the other advice that has been given as well, you will go better than you think you might and just be kind to yourself give yourself all the time you need. :)

    Wishing you all the very best xx