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Topic: Post Mastectomy Pain Syndrome (PMPS)

Forum: Pain —

Share important questions and provide support to others experiencing breast cancer and treatment-related pain.

Posted on: Jan 19, 2010 08:43PM - edited May 29, 2019 11:25AM by Moderators

Deeds wrote:

The purpose for this forum is to discuss the concerns of women experiencing pain several months following their mastectomy. A portion of an abstract from Pain Management Nursing, 2009, describes it this way:

Chronic neuropathic pain affects between 20% and 50% of women after their breast cancer treatment.
Breast cancer treatments are not without side effects; chronic neuropathic pain post-breast treatment (PPBT), also known as chronic post-mastectomy pain syndrome (PMPS), is one such
complication. This pain syndrome was first reported by (Wood (1978)) in the late 1970s; Foley and colleagues described the discrete set of symptoms in the 1980s. (Foley, 1987, Granek et al., 1984) In the last several decades, there has been a wide discrepancy in the reported prevalence of chronic neuropathic pain. Depending on the definition of chronic pain used by researchers,
incidence rates as low as 20% (Carpenter et al., 1998, Stevens et al., 1995) and as high as 50%or more (Fassoulaki et al., 2000, Maunsell et al., 1993, Tasmuth et al., 1995, Wallace et al., 1996) have been reported. Specific to the breast cancer population, (Selim et al., (2002)) estimate that between 200,000 to 400,000 women suffer from the symptoms of PPBT.

Thus, for women who are already devastated by the diagnosis of breast cancer and attempting to cope with the various treatment regimes, the additional suffering from chronic neuropathic pain can be physically and psychologically overwhelming.

Additional information regarding this condition can also be found on another community forum:

http://www.healingwell.com/community/default.aspx?f=14&m=1649831

We welcome your comments!

Edited by Mods to add additional information as the text link above is no longer available. For more information from Breastcancer.org, see our Podcast on Post-Mastectomy Pain Syndrome: What It Is and How Its Treated.

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Oct 26, 2020 06:19PM magiclight wrote:

wordgirl...hoping you move in right direction of feeling better. Hmmm Gabapentin rx before diagnosis of infection!!

Surgery 4/27/2015 Mastectomy: Left, Right Dx IDC, 1cm, Stage IA, Grade 1 Surgery
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Oct 26, 2020 07:56PM WordGirl1968 wrote:

yes, sounds not quite right! I could only take the Gabapentin for 3 days because it gave me horrible nightmares. As if I need that.

Dx 9/11/2020, IDC, Right, 3cm, Stage IIA, Grade 2, 2/2 nodes, ER+/PR+, HER2+ (FISH)
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Oct 26, 2020 09:10PM magiclight wrote:

wordgirl, I saw your post on another thread, so sending wishes that you get pain relief before starting chemo. (((Hugs)))

Surgery 4/27/2015 Mastectomy: Left, Right Dx IDC, 1cm, Stage IA, Grade 1 Surgery
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Oct 27, 2020 05:46AM Rah2464 wrote:

Wordgirl so glad you finally have the medicine protocol you need. I hope you feel better very quickly.

Dx 5/23/2018, IDC, Left, 1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2- (IHC) Surgery 6/26/2018 Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy 7/26/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Nov 16, 2020 12:00PM - edited Nov 16, 2020 12:03PM by magiclight

I found this website for constrictive chest products that may help with PMPS pain. Unfortunately, they would not work for me because I cannot wear anything tight under my arms, thus have only found the Expand a band breast binder helpful. Note that they are designed for the Trans community, but hey may provide another source for products to relieve the side effect of breast cancer treatment

https://www.gc2b.co/

Surgery 4/27/2015 Mastectomy: Left, Right Dx IDC, 1cm, Stage IA, Grade 1 Surgery
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Nov 21, 2020 09:53AM TectonicShift wrote:

What about pain nine years out from mx? I have little twinges and vague pain in the area of my mastectomy scar. Sometimes I think it's nerves regenerating or scar tissue just being scar tissue. Sometimes I have vague pains in what feels like the ribs. It scares me sometimes. But then I realize that I sometimes have pain in the remaining breast too and have my mammograms and so far no contralateral cancer.

Is pain far out from the mastectomy in the general area of the scar normal? Cartilage? Nerves? Bones?

I also had the full radiation treatment on the ribs nine years ago. Can radiation pain linger?

Just random thoughts this morning as I monitors the twitches and twinges and tightness and yes slight vague pain in my chest.

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Nov 21, 2020 11:09AM Castigame wrote:

I thought I was abnormal regards to PMPS. It has been full 3 yrs for treatments. I know I am blessed and feel blessed it is not legit strong pain per say but totally unexpected. It feels like some bug crawls on my chest and pricks whenever possible.





Mimi Dx 1/11/2017, IDC: Papillary/IDC: Cribriform, Right, 3cm, Stage IIIA, Grade 2, 4/17 nodes, ER+/PR+, HER2- (IHC) Dx 1/11/2017, IDC, Left, <1cm, Stage IA, 0/2 nodes Surgery 2/15/2017 Lymph node removal: Left, Sentinel, Underarm/Axillary; Mastectomy: Left, Right; Prophylactic ovary removal Chemotherapy 3/21/2017 Radiation Therapy 7/31/2017 Whole-breast: Breast, Lymph nodes, Chest wall Surgery 10/30/2017
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Nov 21, 2020 11:18AM magiclight wrote:

PMPS continues 5 years out from my surgery. So many bad side effects from cancer treatments. My neighbor just developed diabetes and her MD said it was probably from her chemotherapy. My neuropathy is also a side effect of chemo. Intriguing that there are ever better treatments for the cancer, but there are essentially no treatments for the diseases that are caused by by initial cancer treatments. Feeling everyone's frustration.

Surgery 4/27/2015 Mastectomy: Left, Right Dx IDC, 1cm, Stage IA, Grade 1 Surgery
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Nov 21, 2020 03:22PM MinusTwo wrote:

7 years out - I still have twinges & some pain mostly on the side & arm when I went back for ALND. And yes - radiation problems are forever. I try to stretch every day so the muscles don't pull back & stiffen up. I was just thinking the other day - since it's constant and not debilitating, I'm brought up short every once in awhile trying to remember what it was like before. Also I have breast & truncal lymphadema so I always have to watch that. It makes it impossible to forget BC.

Like Magiclight - I also have neuropathy in my feet that can travel up my calves sometimes and never regained full feeling in my fingers. Fortunately there isn't much pain, but it's like having dead blocks of ice for feet. I have to watch where I'm walking so I don't stumble or trip.

I guess I just try to ignore random pains - when I'm not pissed about something I can no longer do.

2/15/11 BMX-DCIS 2SNB clear-TEs; 9/15/11-410gummies; 3/20/13 recurrance-5.5cm,mets to lymphs, Stage IIIB IDC ER/PRneg,HER2+; TCH/Perjeta/Neulasta x6; ALND 9/24/13 1/18 nodes 4.5cm; AC chemo 10/30/13 x3; herceptin again; Rads Feb2014

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