Affects after mastectomy. What's normal?

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Keba
Keba Member Posts: 9
Hi, so I was diagnose almost 8wks ago but had my mastectomy 4wks ago today. I had issue s with my wound (skin dying and going black) it said gotten better and I didn't need to go back under like they first thought which I saw great. However I still don't  have full movement of my arm (I had lymph nodes removed also) I still seem to get pain on my side. Should this be better by now? Will it ever go back to normal? I know so many women go through this I just actually don't know anyone that has. I have also now been given the option to have a mastectomy on the other side. I was so sure before I had this side done that I was going to have both done and reconstruction but now with the way I feel and the lengthy healing process I find that I'm asking myself if it's worth it? I am 38yr a mother of 4 older kids and a grandmother but I am also single. Argh so confused on what to do and if the pain I still get is even normal. Any feed back would be much appreciated. 

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  • AineG
    AineG Member Posts: 53
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    Hi Keba,  you can contact your breast care nurse or oncologist / surgeon at any time if you think the pain levels are not right.  Having said that, yes it does take time for the pain to go away fully.  Are you able to access any phsyio services?  They're not cheap ( not in Sydney anyway) but I found it very helpful, both mentally and physically to do a number of sessions to help with the movement.  Most Importantly you MUST keep stretching,  I'm almost nine months on from double mastectomy - nodes removed on left side.  Also had radio on left side. I still stretch on the left twice a day.  The right side - only sentinel node and no radio, healed much quicker.
    You'll find at 8 - 12 weeks things will improve a lot.
    Good luck :)

    Aine
  • onemargie
    onemargie Member Posts: 1,264
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    Hi there keba I was 43 last year when I was diagnosed in May with triple neg, had 8 lymph nodes taken but were all clear, 8 rounds of chemo I still have issues with pain sometimes but its bearable and is helped with the physio etc but didn't have any issues with the skin going black. I still attend physio and pilates etc to help improve the range of motion in the left arm, I had my other boob off in november as well as a prophylaxis after I finished treatment, no regrets there for me but its a very individual decision to make,  no lymph nodes that time but did get a seroma as the dr didn't want to listen to me when I said not to take the drain out too soon, but recovered well from both. I am on the waiting list for bilateral reconstruction.  Are you seeing your surgeon again any time soon??? Or have you seen the physio?? You should still be seeing them after only this short amount of time since your surgery well I was at least, or you could see your gp for a physio referal under a care plan which will give you 5 funded visits if you like, alot of physios just use these for payments so theres no out of pocket expenses, do you have any swelling in your arm??? Margie 
  • primek
    primek Member Posts: 5,392
    edited May 2017
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    Cording, which is scar tissue in a band can seriously impact on movement and comfort. Also hypersensitivity with nerve regeneration can cause pain along under arm and side of affected breast from node removal. I needed lyrica for a very short time for the nerve pain and on the physios recommendation regularly stroked those sensitive areas to decrease its sensitivity and it worked and quickly off the lyrica. The cording was also causing lymph drainage issues under arm and breast area. So i had laser done by my lymphodema physio. ..3 sessions and suddenly I had normal movement and no pain. I was also tight at elbow and wrist. My prophylactic mastectomy with recon on other side had none of these issues as didn't have to touch the nodes.

    I'd be speaking to bc nurse or local hospital about lymphodema physio.

    Kath x
  • socoda
    socoda Member Posts: 1,767
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    Hi @Keba, I'm coming up to 11months post mastectomy and am still evolving. The pain that I  experienced  has gone through various phases as healing has taken place.  I too like (Primek) experienced cording although mine was very fine and I found if I didn't massage it would start to thicken.  I also found that weather has played a large part in my pain levels and I find if I get cold the whole left area where the mastectomy  took place and my back both ache at a deep core level until I warm up.  I still think of myself as a work in progress and find I am aware of feeling stronger and fitter as time goes on.  Big hugs to you and know it does improve.  Xx Cath 
  • Keba
    Keba Member Posts: 9
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    Thank you very much for your replies as that was my first post ans I only joined this group this morning. My pain is bareable. I have been going back weekly for wound checks as my wound got so gross. I see my surgeon again next week. I just found out yesterday that I won't be needing chemo. I'm not sure what the triple negative means but I know I hadn't grade 2 invasive lobular bc but oestrogen and progesterone (she has written yes) as you can tell I am still knew to all of this lol I do think you are right about the weather playing a part of it. Because I have noticed that it is worse when it's cold and when I'm in bed. I have movement but just thought I'd be back to normal by now. I propably have up to 85% of movement. I found out yesterday that I won't need chemo or radiation. So I guessing that's good. They have just started me on something called tamoxifen. I'm having my first night back at work tonight. Fingers crossed all goes well. Once again thank you all so much for you really replies xx
    Kelly
  • Annieway2017
    Annieway2017 Member Posts: 5
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    Hi Keba, just wanted ti share with you my experience. I had my bilateral mastectomy with breast reconstruction last November 24 and unable to move much for almost a month especially that I went home with drains on both sides. I was doing some arm streches daily. My family had to help me prepare my food and do cleaning too. My doctors said after 6 weeks I'll start to regain strength, which is true. I was driving and going for morning walks as my exercise. By mid February I was back to work, partime. Btw, I'm turning 40 next week, single and living by myself. Wishing you all the best
  • Keba
    Keba Member Posts: 9
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    Hi Annieway  thank you for sharing that. I went home with the drain she in oneside. I started driving one week later and first night back at work tonight. I a man normal pretty active and independent so maybe I was just expecting that I would be totally back to the way I was before. I guess I will keep going as I am and hope it improves. It has really made me worry about having the other side done. I can't believe people like you go through both at the same time. That must of been so hard
  • Annieway2017
    Annieway2017 Member Posts: 5
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    That sounds really great Keba, driving, back at work plus you don't have to do chemo and radiation!
  • onemargie
    onemargie Member Posts: 1,264
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    that's such good news. triple negative means my breast cancer wasn't hormone receptive at all. keep up the physio and all the best to you lovey! Margie
  • Zoffiel
    Zoffiel Member Posts: 3,374
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    85% after a month is pretty good, Keba. Though we all want the other 15% as well! Any complications from the surgery slow you down. It's pretty normal to be more uncomfortable in the morning, that's why the stretches are so important.

    As for the other breast, I guess it's up to you to figure out how you feel about it. If you are going to stress endlessly about it, it may be worth a months discomfort to get rid of it. I had both off at once because I knew I'd never be able to trust the ',good' one. But that's just the way my head works.

    If you do decide to go for a second op, it's worth discussing immediate reconstruction to avoid languishing on the waiting list--which seems to vary dramatically depending where you live. Marg
  • Keba
    Keba Member Posts: 9
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    Ahh ok thanks for clearing that up. I haver heard of it lots but wasn't sure what it meant. Thank you for explaining that. All the best to you too Margie 
  • Keba
    Keba Member Posts: 9
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    Yes you are right there I guess it's that other 15% that I just assumed i should have by now. I will keep up with my stretches. 

    I was very determined at the start to have the other one done. I looked at it as it would create more balance. That was just my person opinion. I guess I at least have more insight this time as would will happen. This surgery I was told two days prior that it was going to take place so I never had much time to prepare. Then again I don't think I ever could of prepared for it. 

    Can they do reconstructionat the same time? I never knew that. That will be something I will be speaking to them about for sure. 
    Thank you for sharing 

  • gingerninja
    gingerninja Member Posts: 38
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    hi there @Keba..........

    I had a double mastectomy and immediate reconstruction (implants) 13 days ago.  Stiff still and sore as to be expected but the medical team all drilled the message into me prior to going home about the importance of physio exercises, stretching and gentle movement.

    You are doing amazingly well to be back at work!!  well done to you!! what do you do for work??

    My cancer was in my left breast - no lymph node activity (sentinel node biopsy done too).  My surgeon gave me great information about my options, as the only option was left breast mastectomy. She recommended considering a double mastectomy based on my risk factors for developing cancer in the right breast, my age (40) and how cope emotionally with no breasts. I followed  her advice I met with a reconstructive surgeon about what immediate reconstruction after double mastectomy would be like.  For me it was definitely the right decision to have it all done at once...one lot of surgery, one lot of time of work for recovery, one step closer to the nightmare being over, and to be honest I do like having  boobs.......

    I am lucky that I don't need chemo and radiation is also unlikely at this time so I feel like I can now focus fully on recovery and moving forward. 

    Every person's journey is individual, but I hope hearing of similar stories is a help and support for you at this time.

    Best of luck xx

    Sally

  • Keba
    Keba Member Posts: 9
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    Thank you for that @gingerninja it is great to hear stories. I worked permanent part time only 20 hrs a week at nights being a commercial cleaner but then I held 3 different casual jobs during the day but I am not going back to thoes just the cleaning one. I coped really well other than wearing a back pack vacuum cleaning which they got someone else to do for me so that was great.  I only had my left breast removed and 3 lymph nodes but no reconstruction. As they were sure chemo was going to be a must and then I couldn't have it until after they said. I will be looking into the reconstruction being done a time the same time as the other one comes off for sure. Like you said that would be one lot of surgery rather than two more lots 

    thanks again. Hope you recover quickly x