Mastectomy

Hi after 6 cycles of chemo I'm due to have a single mastectomy in June. My BCN has given me leaflets sent me the soft fake boob and sent pictures of what the scar will look like. Can people share there experiences of the same please. Although I'm missing my friends and family support network due to Covid they don't understand what I'm going through ️

  • Hi I was diagnosed right at the beginning of lock down and had a single mastectomy 6 weeks ago now . I've had a wave of different emotions but the surgery wasn't nearly as bad as I thought it was gonna be I'm still recovering and have some swelling but no pain :) I know we are all different but honestly I was actually shocked at how little pain I had even when I woke up x I'm now worried about having chemo that's my next step starts in a weeks time think I'm more worried about that than about the surgery x  the softie situation I'm still trying to get it the right size etc because of swelling and numbness it's a bit difficult to get right my advice also is get some double sided breast tape ! I used it to stick my softie to my bra to stop it moving around as I'm still quite numb and didn't feel it nice at all hope some of this helps you xx 

  • This has helped thanks, it's good to hear it doesn't have to be painful. I'm having under arm lymph nodes removed too, did you?. Are you going to have reconstructive surgery? I've just finished 6 cycles of chemo and it was tough not the chemo itself managing the side effects. My treatment is at a hospital in Manchester and they were very good at listening to me when I wasn't well and recommending new meds to manage side effects.

  • Hi glad it help yep I had lymph nodes removed as well x it's all incredibly scary but honestly the surgery wasn't to bad x the side affects are what worries me but I'm a positive thinker so I've already bought a wig :) and planning on getting a few different ones gonna style it out x I'm gonna have reconstruction yes my consultant has already sent me an appointment for 6 months time to discuss it all I may change my mind but at the moment I am x it's been a really lonely journey going to appointments alone and in for surgery on my own but the nurses at the hospital and the ones who came to my home after surgery have been amazing x I only needed paracetamol and ibuprofen once home and was out of hospital in 24 hours but that's because I was an afternoon surgery and didn't got down to theatre till quite late x I came home with 2 drains which actually sounds way worse than it was x one was taken out the day after I came home the other was in for about 5 days but they are only little bottles and I was able to move around go to loo etc no problems my kids were fascinated by them lol 

  • Gosh your experience if surgery sounds really positive I'm hope mine is the same . I bought a wig specially made only worn it once not been anywhere due to Covid I must say when I'm out i wear a scarce but that's more because my head is cold more then anything else, it's amazing  how quickly I have adapted to having no hair, not sure I'm going to feel the same way re one breast ️. My BCN said they won't be using drains anymore? Are you worried about lymphodema? It concerns me after having major surgery you could be discharged on the same day do they not monitor you for 24 hrs?

  • Funny I'm really concerned about my hair (I'm a bit vain ) I've got used to one breast quite quickly to be honest lock down has sort of helped me get used to it without worrying about going out etc . The drains are little I'd double check that just in case it's been a miscommunication they were 500ml so very small maybe different hospitals have different policy . Lymphodema has def been on my mind I've been doing all my exercises drinking plenty of water . I've also looked in to cbd to help the lymphatic system . Also ginger oil massage and possibly an arm compression sleeve all things I've looked into on google . That's the trouble with lockdown not as much support as we should have had I've felt very neglected as a lot of the staff who would normally help either arent working or moved to other places x 

  • I'm not sure how much it's helped but my arm has  improved I've also noticed I'm less anxious it's different for everyone but it's def not done me any harm 

  • Hi Lupita. Have you had your op yet. I had my mastectomy 4 weeks ago. It wasn't as bad as I was expecting. No pain at all really. I just took paracetamol and ibrufen for a couple of days just to keep things at bay. I got the results of my Oncotype DX today and it's 26/100 which means that I now have to start chemo. I've sat here crying all day because I didn't want chemo. I can't bear the thought of losing my hair. I've coped really well with it all until today. But I thought I was going to just get away with radiotherapy. 

  • Hi no my op is 29.6 your not the first to say the op is not that bad, although my surgery includes the removal of lymph nodes I'm reassured and hope my op is as pain free as possible . I had 6 cycles of chemo not gonna lie the side effects for me were debilitating, nauseousness and fatigue. It's important to talk to your care team as they can change your medication which helped. When I started to loose my hair I shaved it off bought a bespoke wig, due to lockdown not been out apart from medical appointments. After surgery I'm having radiotherapy, what's that like?

  • I had 3 lymph nodes removed. The results came back clear, which was good news but they then send tissue to America for an Oncotype DX test which then determines whether you need chemo afterwards. Mine came back needing chemo so I haven't had radiotherapy yet. That comes after chemo. I had to have a drain in when I had my op. It's hard trying to use the loo, wash your hands, have a strip wash whilst having to hold the drain, but luckily the night shift nurse knits drain holders and she gave me one. It was much easier after that, but I still had to just put it around my wrist so when I got home I added a length of wool long enough to hang round my neck so it was even easier then. So for the last few days I have crocheted 11 more drain holders including a longer bit for around the neck and my daughter has taken them into the hospital where I had my op and where she works. They were so grateful. Hope your op goes well. Just take it easy afterwards and do your exercises. The hardest bit was having to sleep on my back for about 3 weeks. 

  • BCN told me they are trying not to use drains at the moment due to C19? My treatment plan is the full monty chemo, surgery, radiotherapy and then either herceptin for 12

    months or some new IV drug for a further 14 cycles. I will find out which treatment after they have examined the removed breasts! Did you have reconstruction straight away? I have to wait for at least 12 months?