Pain and scars

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clik212
clik212 Member Posts: 10
edited June 2014 in LGBTQA+ With Breast Cancer

I am one and a half months from bi-lateral masectomy, I had stage 1 of High-grade ductal cacinoma in situ on in my left breast. However, when they did a biospy on tissue they found that it was now outside the tumor. My tumor was small, a pinpoint but from what I've read and my age, I spoke with my surgeon and decided on removing both breasts. My onocolgist said "I dodged the bullet." I consider myself lucky. I am healing very well, no infections etc. However, I feel as if there is a steel band wrapped around my chest. For the first month after surgery, I had to sleep sitting up. The surgeon reassured me that the lumpness of my scars will even out and that I can go in for cosmetic surgery. I feel disfigured. I don't know if anyone out there has any input about the scars and the pain which just doesn't go away. Is it because of nerve damage? When does the pain subside? 

I am glad I found this site. Because at the AMS, feels a bit homophobic.

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  • dee1961
    dee1961 Member Posts: 1,672
    edited November 2009

    Hi clik22,

    Welcome to you but sorry about the circumstances. I can understnad the band around the chest feeling. I have it too, but I am going through reconstruction. Hopefully over time this too tight bra feeling will go away. Try some stretching exercises, it may help.

    Good luck to you and nice to meet you :)

    Dee~ 

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  • clik212
    clik212 Member Posts: 10
    edited November 2009

    Thanks dee,

     Will do. 

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  • Lovegolf
    Lovegolf Member Posts: 513
    edited November 2009

    I had that feeling too.  I had surgery 10/28 to reshape my dog ear , my chest and under my arms.  I am still sore but I feel somuch better.  I felt like thre was a hot piece of wire around my chest before.  There was a trigger point that just hurt all the time.  PS cleaned out scar tissue some and the painpoint has gone away.   I did get some relief with acupunture too.

    I will be glad to answer any question ou can PM me.

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  • clik212
    clik212 Member Posts: 10
    edited November 2009

    Hi Lovegolf,

    I'm glad I'm getting responses. I am new at this so may I ask what is a "dog ear?" 

    Thanks

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  • ddlatt
    ddlatt Member Posts: 448
    edited November 2009

    i had a bilateral mastectomy almost a year ago this month, and it's really amazing how much our body changes in a year after mastectomy. i have posted photos of the changes in my scar over this past year: http://www.flickr.com/photos/oceanbornstudios/sets/72157608493948291/  my skin is completely flat now, the scars have healed beautifully. 

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  • clik212
    clik212 Member Posts: 10
    edited November 2009

    Thanks ddlatt,

    I looked at your flickr photos and read your comments. That's encouraging. I feel mutilated, sorry can't help that. When younger I loved my breasts. However after the age of sixty they really grew and I was very unhappy with them. My scars are long and the skin right now is puckering. So my question is to anyone whether the skin smooths out, or is my situation unique to me. Also the surgeon left a small roll of fat hanging from the scar. I elected not to do reconstruction at my age. However, I see that I will have to have cosmetic surgery to rid my self of this strange look  flesh. Then as I first posted when does the pain subside if it does completely or does it remain as chronic.

     In today's New York Times there is an article about the lingering pain. Sorry, my Mozilla Firefox doesn't allow for cut and paste. However, if you go to NYTimes.com the article is under health.

    I also went through a lonely recovery, I can't believe that my friends abandoned me. Luckly an old friend, came in from out of the country to stay with me one week and accompany me to the different procedures I had to go to. MRI, the oncologist and the surgeon for removal of the drains, which I had to use for two weeks.

    This has been an  eye opener. Thanks for your ear.

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  • Lovegolf
    Lovegolf Member Posts: 513
    edited November 2009

    Dog ears are the roll/flap of skin...I joked mine wer bassetthound ears..  Today is 2 weeks post surgery and I am feeling better everyday.  I still have strips on site and a 6inch ace wrap during the day. 

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  • clik212
    clik212 Member Posts: 10
    edited November 2009

    Lovegolf,

    I guess those two rolls of skin are what you are refering to. You seem to be healing rapidly. Although I did too, the pain is still lingering. 

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  • chainsawz
    chainsawz Member Posts: 3,473
    edited November 2009

    clik212-  hang in there!  I had a bilateral mast 09/08 without reconstruction.  I thought that steel band feeling would never go away, but it definitely gets better with time.  The zapping and sharp pains will also get better.  I get them all just once in a great while now.   My scars were very wrinkled and after a few months those bumps went away and they are smooth.  You can go back for scar revision if you aren't happy with something :>  It will get better and please feel free to PM me if can answer any questions for you. 

    Sorry to hear about your friends.  That has been a hard one for many of us and I just don't understand it.  Just know you are not the only one - I hope they never have to walk in our shoes!  Best to you!! lisa

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  • clik212
    clik212 Member Posts: 10
    edited November 2009

    chainsawz,

    Thanks. That's the info I was looking for to ease the confusion I have about the way I look. I guess I will go in for cosmetic surgery when I recover from this and make sure I am able to withstand more surgery. My only other question right now is, if anyone out there went through a second surgery to rid themselves of excess fat or flesh. Is it less painful? I don't know why during surgery they don't even out the area.

    Thanks again. 

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  • chainsawz
    chainsawz Member Posts: 3,473
    edited November 2009

    You might post on a surgery forum about the additional reconstruction, since I have read posts by others who had a follow up surgery to even things out and they can give advise.  It has to be sooo much easier than the mastectomy :>  I asked the same question of my surgeon and she said she was a breast cancer surgeon and not a plastic surgeon so she gave me the best result she could.  I must say, she did a great job and I am happy!  However, I hope one day to have a plastics surgeon remove my blobs!! 

    It takes a few months for everything to settle and the swelling to go down.  But it will look better and feel better.  Hang in there!! 

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  • pantherlinn
    pantherlinn Member Posts: 7
    edited November 2009

    Ask you dr for Physical Therapy.  I had someone break down the scars for me.  It hurt, but after soooooooo much better.  I scar very heavily.  You need to find a therapist that is familiar with breast cancer and node removal so they massage the tissue correctly.  I am back in PT for my lat flap scar.  The therapist I have now won't touch the breast scars or under my arm, just the back so I don't think it is doing much good.  I am going to ask my dr for a referral to the other PT. 

    Linn

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  • terrina
    terrina Member Posts: 12
    edited January 2010

    I had a lumpectomy in August 2007 for Stage 2 BC.  Dose Dense Chemo 4xAC + 4xTox then 33 Rads.  I still have MAJOR pain in my breast the Doctors say it is from the Rads.  The swelling comes and goes and I am in Phys. Therapy.  The "gaurding" from the pain has caused my ribs to flex and pulls them out of whack, lol.  Sounds funny but feels horrible and looks a little wierd. 

    Time.... Give it time... If that doesn't work try PT it helps.

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  • denise1950
    denise1950 Member Posts: 1
    edited January 2010

    Hi am new to this site.  I have alot of similiar experiences as you have.  Had DCI in left breast but had bi-lateral mastectomy.   I also have skin hanging under my arms and with the surgery have scars and a large puckered look on my left side.  Am 59yrs and I don't plan on getting reconstructive surgery.  I feel like alot of the woman do,  cancer seems to be in my thoughts. I am fortunate that I haven't had chemo or radiation.   I also have a partner of 23 years who 's been very  supportive

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  • love2walk
    love2walk Member Posts: 3
    edited January 2010

    Hi !  I am new to this site too - and am soo glad to find a lesbian site.  I'm 61 and had a bilateral mastectomy on 12/9/2009.  Feel very fortunate to not need chemo or radiation.  I have started stretching exercises and am beginning to feel that I may someday lose the tight band around my chest.  I also have fluid build-up under one incision and am ordering a compression vest which will hopefully help.  Thanks ddlatt for your great photos and the news that your scars are now flat. 

    I live alone but my adult child came at thanksgiving and made me promise to fill in a spreadsheet ze made with the people's names who would help me out after surgery.  Because of this, i was able to call friends and ask for help.  I was truly amazed by the generosity not only of friends, but of friends of friends, who offered to help out.  It was a gift to (finally) learn to ask for help.

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  • Lovegolf
    Lovegolf Member Posts: 513
    edited January 2010

    The tight hot wire feeling on your chest is the worst.  I told doctor it was like having hot piece of wire across my chest.  I did go to a PS 6month after mx who fixed it all.  He trimmed the "dog ears" and sucked out some extra tissue.  After that the wire went away.

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  • clik212
    clik212 Member Posts: 10
    edited January 2010

    Lovegolf,

     Would like to ask you, if the second  surgery was as strong as the first? Did you need to use drains. And how long did it take to heal? Where you able to go home the same day? Thanks.

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  • Lovegolf
    Lovegolf Member Posts: 513
    edited January 2010

    Sorry it took few days to get back am getting ready for a trial.   The corrective surgery was done in PS office surgery suite.  I was home within 2 hours of waking up.  It really hurt more than MX. I was bruised and sore for week...had it done on a Thursday and was at work Monday.  It has been 3 month and I am so glad I did it.  I had a drain that stayed in until Monday.  It was not bad.

    I have sent you a PM with my personal email if you have any other questions..

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