How was your Double Mastectomy recovery?

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Judemo
Judemo Member Posts: 172 Member
edited September 2021 in Breast Cancer #1

Hello all!  I recently underwent double mastectomy and still have drains in (hopefully they can be pulled at next follow up).  I was DXd with IDC (invasive micropapillary carcinoma) and DCIS in the right breast.  It's early stage and they are recommending Tamoxifen.  Regarding the post op recovery:  Did the drains bother you?  Did you have a lot of tightness to your upper chest?  I am dealing with a "pulling/tightness" sensation across my upper chest.  And you know what I find weird?  Is the area under the arm that seems to look like a "wing"!!  It's scooped up and it looks like a weird extra muscle or something under my arm!  They did lymphnode bx in that arm so maybe thats why?  I will ask my DR at my follow up.  What is really annoying is the NUMBNESS!!  Does this last?  I have numbness on both sides and under my arms.  Did you have any of these sensations?  I also had to be taken back into surgery several hours after the double mastectomy as I had developed a huge hematoma on the right chest...so they had to go back in and evacuate that.  I was in the hospital a couple of days because of that.  

I was just checking to see if others had similar experiences as me?  I pray and hope everyone is doing well!

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  • Chickadee1955
    Chickadee1955 Member Posts: 356 Member
    edited October 2021 #2
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    Double Mastectomy Recovery

    Hi Judemo.

    I had double mastectomy in 2010.  I absolutely hated the drains!!  It was one of the worst parts post-surgery.  It is normal to have tightness and numbness after surgery. A lot went on!  For me the numbness slowly resolved EXCEPT in a few areas.  Most of the sensation returned to normal over several years.  It's been 11 years since my surgeries and I still have some areas that don't 'feel'.  I hope you are doing well and healing nicely by now.  Take care and hang in there.  It does get better Smile.   Chickadee

  • Judemo
    Judemo Member Posts: 172 Member
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    Double Mastectomy Recovery

    Hi Judemo.

    I had double mastectomy in 2010.  I absolutely hated the drains!!  It was one of the worst parts post-surgery.  It is normal to have tightness and numbness after surgery. A lot went on!  For me the numbness slowly resolved EXCEPT in a few areas.  Most of the sensation returned to normal over several years.  It's been 11 years since my surgeries and I still have some areas that don't 'feel'.  I hope you are doing well and healing nicely by now.  Take care and hang in there.  It does get better Smile.   Chickadee

    Hi Chickadee!  Thanks for

    Hi Chickadee!  Thanks for your reply.  It helps to hear other's experiences!  I see many people read topics but they don't reply or share their stores, so I appreciate your response.  I'm glad to hear that youve healed well.  Did you experience any underarm problems like "cording"?  I've now developed what's called Cording or Axillary web syndrome.  It's very painful and it makes it difficult to raise my arms.  Both of my axillary areas are very painful and sensitive.  Also, I developed rashes under the arms from (I guess) rubbing against the new scars etc.  who knows, but this is all so overwhelming and painful.  It is wonderful that I got the drains out now BUT, I have to go in to the DR to get fluid drained from both sides.  Uck!  I'm having seromas develop.  ?

    I'm not one to complain much but i can't help but mention the problems i'm having post bilateral mastectomy.  Again, thank you for your reply!

  • Chickadee1955
    Chickadee1955 Member Posts: 356 Member
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    Double Mastectomy Recovery

    Hi Judemo!

    I did not experience cording, thankfully.  I still feel a pulling from the inside of my arm and down the outside of my chest (left side) even today, all these years later.  Years worth of stretching hasn't changed it.  Some things are just permanent, I guess.  

    I'm so sorry you had to go back to the doctor to get fluid drained.  Just when you thought it was done!

    One word of caution, take the doctor's advice about not having blood pressure or blood draws on the side on which you had cancer,, and wearing a compression sleeve when you fly.  Lymphedema can result if you don't and it is a bear!  I was fortunate that mine resolved with treatment and hasn't recurred, but I was told that it could become permanent.  Just be cautious.

    Please feel free to mention problems you experience.  This is a safe space, and usually someone else has experienced the same things.  Sometimes when you tell your doctor about some odd thing or other they will tell you it isn't related to cancer or treatment.  Then you mention it on this site, and lo and behold, 10 women will say they experienced the same thing.  It is very reassuring to know that whatever it is, it is not just you!  No one understands like someone who has gone through it, so talk about whatever you'd like.

    I don't get on the discussion board daily, but try to check in once in awhile.  During my active treatment I was on multiple times a day!  I'll be sure to say Hi if I see you post, and will be happy to respond.

    Best wishes!  

    Chickadee

     

  • Judemo
    Judemo Member Posts: 172 Member
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    Hi Chickadee! Thanks so much

    Hi Chickadee! Thanks so much for your reply and word of cuation.  That was very helpful and I will definately remember that.  I was at the Dr's office yesterday and had to remind them to take BP in the other arm.  Although I had a double mastectomy, they only took lymphnodes out of one side.  So, I will always tell them to use the other arm. I will also double chec with the DR tomorrow about that since I had double mastectomy.  I have to go backn to get drained again tomorrow.  I'm having a lot of problems with the incision on the one side opening up, rashes, itchiness, hardened areas around the wounds, cording (axillary web syndrome).... It's been very challening.    I admit to not doing my exerices like I should do.  Did you just get used to living flat?  

    Again, thanks so much for replying to me!  

  • Chickadee1955
    Chickadee1955 Member Posts: 356 Member
    edited October 2021 #6
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    Hi Judemo

    I did not choose to live flat.  I had reconstruction, albeit after recovery from my initial surgery.  My surgeon for the mastectomy 'prepared' for my reconstruction by creating a 'pocket' for the implants and leaving sufficient skin to accommodate them.  I decided I did not want my implants to be as large as my breasts had been, so requested a smaller size.  By the time all was said and done however, I ended up the same 36D I had been before cancer!  It was a very long and arduous experience to try to find bras that work with the implants, so I have given them up altogether unless I have a blouse that isn't opague enough (I also got nipple reconstruction and tattoos).

    I hope your issues clear up soon.  It is so frustrating not to be able to move on to whatever the next stage may be.  

    Take care.

    Chickadee

  • Tracyjo1970
    Tracyjo1970 Member Posts: 4 Member
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    Hi, I had a double mastectomy 2 weeks ago also with lymph nodes removed. I have the wing on the armpit where the nodes were removed. I had the drains pulled 7 days post op and since had extreme swelling causing pain due to what friends believe is premature removal of the drains. I had an unusual journey. In Oct 2021 went for Mammogram. Have had 2 surgical core biopsies, 1 MRI biposy (that was hell) a Lumpectomy ... all within 4 weeks. Then a week later I had wires placed and a double Mastectomy. I am just grateful it didn't spread to my Lymph nodes and I was told by my Oncologist I am done and safe. I pray so

  • jelynle
    jelynle Member Posts: 4 Member
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    Hi Tracyjo.

    I had a bilateral mastectomy with diep flap reconstruction October 12 of this year. My breast drains were removed 7 days after surgery although belly drain stayed in for another week without any problem. I'm sorry you are having issues. It sounds like you have had quite a journey. I'm not familiar with the wires placed. I did have a radioactive seed placed 3 days before lumpectomy to guide the surgeon.

  • Tracyjo1970
    Tracyjo1970 Member Posts: 4 Member
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    The wires were a safety measure for the Lumpectomy because I had 6 markers placed in my breast. That's how it was explained to me. Thank you!!

  • Judemo
    Judemo Member Posts: 172 Member
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    Hello Chickadee, Tracyjo and jelynle!

    Thanks for sharing your experiences with all of us and I am sorry to hear about the pain and discomfort that you had to go through. No one really can prepare you for what you actually do go through. Those drains were NOT fun and now that it's been a little more than 3 months since my surgery, I still have minimal pain and tightness in my surgical site area/chest. I was a 36 DD before surgery and I absolutely love living flat now. I hated my boobs (sorry boobs) as they were always in the way and dictated what I could and couldn't wear. Now I am enjoying wearing all my old tops/sweaters that I saved from many years ago and many pounds ago!! I had seen the plastic surgeon prior to surgery to go over what my plastic surgery options were, but decided to forgo having implants.

    I am back to work now and it has been brutal getting my strength back up to par. I also have been experiencing brain fog - not sure if that is from the surgery or just age (in my 50's), not eating the greatest or from having double mastectomy?!

    The main thing that is weird is the hard scar tissue that remains on both sides. I wonder if that will ever go away?

    Well, I wish you all the best of luck with your healing and recovery! Thanks for sharing!

  • jelynle
    jelynle Member Posts: 4 Member
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    Hi Chickadee!

    I too am in my 50s and I was flat most of my life and wanted to be at least a full A. I actually think I'm closer to a B, but I really think they are a good size for me. It sounds like you are adjusting to the new you pretty well. I have periods of feeling very sorry for myself. Why me??? But then I remember, I am blessed. It was caught so early.

    The funny thing is that my chest has not been a bother at all. There is feeling, but it's totally different than it was. My belly area has a huge hip to hip incision and I'm really weird about incisions. I was feeling so good that I started running on my treadmill the week of Thanksgiving. The following week I started light hand weights. The week before Christmas I added shoulder presses and upped them to 10 pounds. Then Christmas Eve I started getting a sharp shooting, burning pain below my incision on the left side. I got in to see the PA on Tuesday and she said I strained the muscle and it is irritating the nerve. She told me to take Gabapentin (I was prescribed it after mastectomy and never took it) and if it doesn't go away in 2 weeks come back. In the meantime NO weights. I simply overdid it.

    Thanks to everyone for sharing. I am so happy I found this site.