Post Breast Therapy Pain Syndrome (PBTPS)

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Erica35
Erica35 Member Posts: 47
edited June 2014 in Young With Breast Cancer

I have seen a number of young women recently on YSC/FB/etc posting about prolonged pain after breast therapy.  There are many causes of chronic pain after breast therapy that are not related to metastasis however typically the work up stops at determining that the rib pain, arm pain, etc is not due to cancer.  I have Radiation Induced Brachial Plexopathy (RIBP) which was caused by the interaction of avastin with radiation.  Please see my pinned post in the lymphadema forum about RIBP.  I suspect that many women here have some version of PBTPS with either chest wall pain, scar pain, arm pain, axillary cording or neuropathy.  I have found the medical community to be highly unprepared to diagnose and treat causes of PBTPS.  Here is a nice review about PBTPS which acknowledges that it is greatly underreported in breast cancer survivors.  Interestingly, younger women according to this article have an increased risk of developing PBTPS: 65% of women ages 30-49 vs 26% of those >70.

While all the individual pathologies that make up PBTPS may be different, the treatments so far are fairly limited and focused on general treatments for neuropathic pain.  I thought we could all share our experience with PBTPS here and share our workups and successful or failed treatment attempts.

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  • ReeseeB
    ReeseeB Member Posts: 6
    edited September 2011

    Hi Erica,

    I've had PBTPS ever since my mastectomy in 2005 (which was before I started chemo, radiation or had DIEP reconstruction). I completely agree that most doctors are unprepared on how to help/treat PBTPS patients. While I love my oncology team, that is the one and only area that I'm not happy with. I feel like they don't know how to deal with it and brush it aside because it's not cancer (only pain). 

    Please feel free to join my Facebook support group called Post Breast Therapy Pain Syndrome: http://www.facebook.com/groups/265320350156856/ 

    Thank you,

    MB

    Diagnosed 5/2005 at age 32, BRCA1+, Triple Negative, 5.5 cm, 4/11 nodes, stage 2b/3a

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  • dixiebell
    dixiebell Member Posts: 280
    edited September 2011

    Thanks I had never heard of this!!!

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  • BlueCowgirl
    BlueCowgirl Member Posts: 667
    edited September 2011

    Really interesting, thanks for the info, as I didn't know anything about this either. Just wondering...does anyone else have "phanton limb" experiences after a mastectomy? It's the weirdest thing, I feel like I can feel my nipple inverting, though my nipple is long gone...

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  • bluepearl
    bluepearl Member Posts: 961
    edited September 2011

    I have this. What the doctors don't get is that if this pain isn't addressed quickly and effectively, it can become chronic. I take nortriptyline and ativan for mine, plus some OTC rubs...and an anti-chafing cream works wonders if your arm feels like it's sunburned and you don't like clothing touching it. Baclofen can work too. Some of the pain can come from damaged nerves (and it can take up to 2 years to work itself right; some stretched nerves and muscles; and from cording and lymphedema; and nerve bundles (knots). All can be addressed thru meds and physical therapy. And I have heard the phantom limb thingy too.....I was itchy under my numb armpit and scratching it was useless, so I just scratched under the other one and it worked! So maybe just rub your other nipple, especially in a mirror, and it might go away.

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