Post Mastectomy Pain Syndrome

Options
sdevilbiss
sdevilbiss Member Posts: 41 Member
edited December 2022 in Breast Cancer #1
Hi all, I did not know there was such a syndrome named and recognized as such until reading an article in Nursing 2002,November issue. All who are about to have a mastectomy or lumpectomy,please be aware that the article states that if proper treatment of acute pain isn't treated in the first 24 hours after surgery, a pain syndrome
may develop. "Undertreatment of acute postoperative pain places the patient at risk for developing neuropathic pain months later. Pain syndrome may also develop as a
result of surgical trauma to nerves."
I know this to be true because
I had my mastectomy 13 years ago and I still deal with numbness, burning, and sharp pain under my arm and across the left chest wall. I was told by my surgeon that this would fade with time. Well, it hasn't and from what I've been reading that was posted, a lot of us are suffering from post mastectomy pain syndrome. Anyone who has found a drug relief regimen, please let me know. Please pray for me on November 26. Oncology appointment for my lymphoma. It's in remission and I pray it has stayed that way. Thanks, Sandee

Comments

  • inkblot
    inkblot Member Posts: 698 Member
    #2
    Options
    Hi Sandee:

    Just wanted to than you for posting that important info for everyone! These are the kinds of important (but often not very widespread) things we need to learn about in order to help ourselves as much as possible.

    I'm sorry that you still have pain these many years later. I haven't had pain, since the early healing phase. The first few weeks, I could scarcely raise my arm! I do get an occasional soreness in the area of my scar, both axillary and breast. Rad. onc. says it's normal for a bit of tenderness to come and go for the first year or two post radiation. (does that sound familiar?!)

    I'm wishing you the VERY best for 11/26 and hope all your news will be good!

    Love, light and laughter,
    Ink
  • nasa2537
    nasa2537 Member Posts: 311
    #3
    Options
    Lots of prayers for you Sandee...let us know how the appt goes! God bless. Cyndi
  • geral
    geral Member Posts: 130
    #4
    Options
    Hi Sandee!
    I'm sorry to hear about your chronic pain. I have suffered with chronic pain for 2.5 yrs. since my lumpectomy. You'll find one of my posts about this on 9/13/02 (presently, on p.16 of this discussion board).
    The info you posted re:Nursing 2002 is very interesting to me. My pain wasn't properly addressed after surgery, so I developed a frozen shoulder and chronic pain. My surgeon & oncologist said that my frozen shoulder may have been causing my breast pain and to wait until after my treatments (6 mos. later!) to see an othopedic surgeon. When I saw the ortho, he said exactly opposite that my breast pain had caused my frozen shoulder. Now, that I'm a 'seasoned survivor' I realize this is the logical explanation. The breast surgeon & my oncologist were just putting me off! What you said is SO true...if only our pain was addressed initially!
    There's an article re:PMPS from a surgeon's perspective that I've referred to many times 'www.cancerlynx.com' This has helped me alot.
  • geral
    geral Member Posts: 130
    #5
    Options
    geral said:

    Hi Sandee!
    I'm sorry to hear about your chronic pain. I have suffered with chronic pain for 2.5 yrs. since my lumpectomy. You'll find one of my posts about this on 9/13/02 (presently, on p.16 of this discussion board).
    The info you posted re:Nursing 2002 is very interesting to me. My pain wasn't properly addressed after surgery, so I developed a frozen shoulder and chronic pain. My surgeon & oncologist said that my frozen shoulder may have been causing my breast pain and to wait until after my treatments (6 mos. later!) to see an othopedic surgeon. When I saw the ortho, he said exactly opposite that my breast pain had caused my frozen shoulder. Now, that I'm a 'seasoned survivor' I realize this is the logical explanation. The breast surgeon & my oncologist were just putting me off! What you said is SO true...if only our pain was addressed initially!
    There's an article re:PMPS from a surgeon's perspective that I've referred to many times 'www.cancerlynx.com' This has helped me alot.

    Hi again!
    As I was typing the 1st part of my reply, this screen went grey, so I hit 'submit', so I wouldn't lose what I'd already typed!
    Currently, I only use ice packs and microwaveable heating pads for pain. I have to use them off & on (mostly on) all day. I've been using these for the last 2.5 yrs.! I'm really tired of it, but I don't do well with meds.
    A week ago I thought I'd give meds a try again, so I started taking 300 mg. Neurontin/day- so far no less pain. If you haven't tried Neurontin you may want to because several girls on this site take it (tara24242 for one). Maybe it would help your nerve damage.
    A year ago, I was on a pain med. It was a Duragesic pain patch. This was another thing my oncologist did just to get me to shutup about being in pain. I went in to get a prescription for Celebrex (his nurse had recommended it to me), and he gave me Duragesic instead! Not knowing any better, I kept taking it for a year and kept having lots of side effects. Finally, I decided I wanted to stop it, and it wasn't until I told him that he showed some concern about how long I'd been taking it! It did help the pain sometimes but not enough to be worth the side effects and risk becoming dependent on it.
    Recently, a pain dr. prescribed lidocaine patches to numb the area, but I haven't tried them (very expensive) yet.
    If you haven't seen a pain specialist yet you may want to give one a try. However, make sure that he/she has experience treating breast pain. The 1st one I went to over a yr. ago said 'I don't do breasts'! I didn't try another pain spec. 'til recently. I asked ahead of time if he 'did breasts!' and was told he does. After going to him, I'm not so sure. He's primarily a sports dr. He's the one who prescribed lidoderm patches.
    Again, I am so sorry you've had to suffer needlessly for 13 years. Thanx for your info!
    Take care,
    Geral
  • dreaming
    dreaming Member Posts: 26 Member
    #6
    Options
    https://csn.cancer.org/discussion/138947/post-mastectomy-pain-syndrome

    I know that the number of lymph nodes that were removed have a lot to do with pain under the arm.

    I had 18 removed, all negative and 30 plus years ,I occasionally get severe pain, I use special warm pillow to help.

    Was told are the nerves growing.

Discussion Boards