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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 05:43PM - edited May 29, 2019 08:25AM 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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Dec 12, 2019 05:07PM MinusTwo wrote:

I hope you will still post your thought here. Along with a number of others, I don't do Facebook at all so I hate that the discussions are leaving BCO.

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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Dec 13, 2019 10:34AM - edited Dec 14, 2019 06:04AM by magiclight

This Post was deleted by magiclight.
Surgery 4/27/2015 Mastectomy: Left, Right Dx IDC, 1cm, Stage IA, Grade 1 Surgery
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Dec 23, 2019 06:48AM Lezza13 wrote:

MinusTwo I agree with you. I think there are still those of us who do not want use Facebook. I will join you and continue to post here.

Dx 12/30/2011, IDC, <1cm, Stage IIA, Grade 2, 2/23 nodes, ER+/PR+, HER2- Surgery 2/27/2012 Lymph node removal: Right, Sentinel; Mastectomy: Left, Right Hormonal Therapy 7/16/2012 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Dec 24, 2019 07:03AM ShaneOak wrote:

Dropping in to vent for a minute since all you wonderful people get it. I’m 7 years out from my BMX and the itching and random “zings” of pain are still a daily annoyance as is the shoulder blade pain. Itching goes through the roof after a cocktail so no relief there. Considering a check up with the PS but know that I will leave in anger and frustration when he says it’s nerves regenerating and just part of having a BMX. Wondering if it’s time for an exchange or if that will even help? Take care all!

Dx 12/5/2012, DCIS, Left, 6cm+, Stage 0, Grade 3, 0/3 nodes, ER+/PR+, HER2+ Surgery 12/16/2012 Lymph node removal: Left; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 4/24/2013 Reconstruction (left); Reconstruction (right)
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Dec 30, 2019 07:31AM Via wrote:

it’s truly incredible hw doctor don’t educate us about the pain afterward. I don’t understand why!?! Maybe they ate scare we won’t have the surgery. I rather they are honest with me and I can get mentally ready for whatever comes my way! But we have survived and enjoy your gran

Hormonal Therapy 3/15/2019 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Dec 30, 2019 10:41AM Aussie-Cat wrote:

I get the impression that a lot of doctors aren't very familiar with Post Mastectomy Pain Syndrome (PMPS) and even the ones that know about it in theory don't know what it's like to actually have it. It's true as well that a lot of doctors don't warn us fully about the possible side effects of surgery.

Diagnosed with nerve pain (post mastectomy pain syndrome) July 2018. Twin sister died of breast cancer May 2019. Surgery 6/19/2018 Prophylactic mastectomy: Left, Right
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Dec 30, 2019 03:02PM MinusTwo wrote:

From what I've seen, the majority of patients (breast cancer or other) do not really want to pay attention to their regular drugs, let alone treatment for a major issue. They don't want to know. They just want to turn it all over to the doc and have him or her "take care of it". I'm always amazed at the number of women who have no clue what chemo they had or what their diagnosis was - other than just cancer.

When my Mother was little, a doctor was "god". You didn't ask anything or question his prescriptions & orders. I think it's great that many patients are becoming partners with their docs in their health care. But - there are still a lot of patients AND doctors who haven't made the transition. My solution is to shop for a doc who is willing to share and discuss whatever the issue might be. And docs that are willing to learn from patients. It's harder than you might imagine.

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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Dec 30, 2019 04:34PM LoriWNY wrote:

Minus--You have said something that rings so true to me. I totally agree that the doctor/patient relationship today should be all about sharing and discussing. A doctor who allows his/her patient to have an opinion is rare and a doctor who values learning from his/her patient is even more difficult to come by. One of my doctors told me that his patients who had the best outcomes were those who did their own research, discussed and weighed their options with their medical professionals, but made their OWN decisions. Once I heard that from this particular doctor, I knew he was the best fit for me. I know/have known some women who don't know all the details of their diagnosis and just do whatever their doctor tells them to do without looking into the best options for them--unfortunately, these women I knew/know are no longer on on earth or not doing well today.

Lori. BMX/TE recon. 2/26/13: Right-IDC 1.5cm., LCIS; Left-DCIS 8.2mm. BRCA1 & 2 Neg.; Oncotype DX 6. Round silicone 7/5/13. Total hysterectomy 8/26/13. Revision/smaller anatomical silicone 2/17/15. 3d nipple tattoos (Vinnie Myers) 5/24/16. Dx 11/26/2012, IDC, Stage IIA, Grade 2, 1/14 nodes, ER+/PR+, HER2+ Surgery 2/25/2013 Lymph node removal: Right; Mastectomy: Left, Right; Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Targeted Therapy 5/12/2013 Herceptin (trastuzumab) Hormonal Therapy 5/14/2013 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 7/4/2013 Reconstruction (left); Reconstruction (right) Surgery 8/25/2013 Prophylactic ovary removal Hormonal Therapy 10/31/2013 Femara (letrozole) Surgery 2/16/2015 Reconstruction (left); Reconstruction (right) Surgery 5/4/2015 Reconstruction (right)
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Dec 31, 2019 08:27AM - edited Dec 31, 2019 08:33AM by magiclight

I agree that people need to be as informed as possible re: treatment options. However, I do not agree that patients are to blame for doctors who are too often lousy at communication. They are trying to sell you on the procedures they perform and then when the outcome, in my case, PMPS, they claim ignorance of its prevalence. Additionally, everyone does not get paid time off work to visit many doctors and some people do not understand the medical lingo. Prior to surgery, I reviewed the major hospital sites information about my planned surgeries and did not find any information about PMPS as a highly likely potential side effect. Even on this site, when I looked at the comments to people preparing for surgery was unable to find anyone who suggested asking the drs about PMPS.

PMPS is, according to the doctor listed on the opening page of this thread, not a diagnosis until 3 months after surgery. By that time, if you are not have reconstruction, one is long past your surgeon being interested as long as your external surgical site is not the problem

Was anyone here given information about PMPS prior to surgery? If so, what was the information?

Surgery 4/27/2015 Mastectomy: Left, Right Dx IDC, 1cm, Stage IA, Grade 1 Surgery
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Dec 31, 2019 08:38AM redhead403 wrote:

I am a health care professional and no, no one mentioned it. I like to think that I am informed. Never saw it mentioned in any information I have read

Surgery 4/16/2019 Lumpectomy: Left Dx 9/9/2019, DCIS/IDC, Left, <1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- (IHC) Surgery 11/7/2019 Lymph node removal: Sentinel; Mastectomy: Left, Right; Prophylactic mastectomy: Right; Prophylactic ovary removal; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Radiation Therapy 1/6/2020 Whole-breast: Breast
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Dec 31, 2019 11:00AM Aussie-Cat wrote:

magiclight, my breast surgeon did tell me that some women get nerve pain after a mastectomy, especially when you have fibromyalgia like I do. I saw an anaesthetist beforehand and they put me on Lyrica the day of my surgery "for 2 weeks" to try to prevent it, but I got nerve pain anyway and am still on Lyrica a year and a half later. I wasn't told that Lyrica is hard to get off and can cause side effects when you try. I wasn't told that there are support groups or that it's called PMPS.

Diagnosed with nerve pain (post mastectomy pain syndrome) July 2018. Twin sister died of breast cancer May 2019. Surgery 6/19/2018 Prophylactic mastectomy: Left, Right
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Dec 31, 2019 12:40PM - edited Jan 2, 2020 08:11PM by magiclight

This Post was deleted by magiclight.
Surgery 4/27/2015 Mastectomy: Left, Right Dx IDC, 1cm, Stage IA, Grade 1 Surgery
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Jan 6, 2020 08:42AM magiclight wrote:

Facebook is the place I go to for info/support on PMPS. If you are looking for it type: Facebook Post Mastectomy Pain in a Google search and it will come up. Joining Facebook is not so scary and I've seen dozens of other references to Facebook on this BC.org site.

Surgery 4/27/2015 Mastectomy: Left, Right Dx IDC, 1cm, Stage IA, Grade 1 Surgery
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Feb 15, 2020 09:19AM - edited Feb 15, 2020 09:35AM by magiclight

Some newer treatment explorations for PMPS that might be beneficial for the 40-50% post mastectomy incidence of this painful syndrome. Staying hopeful!

Serratus Plane Block

https://www.ncbi.nlm.nih.gov/pubmed/28079733

https://www.asra.com/asra-news/article/180/postmas...

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC61579...

https://www.nysora.com/regional-anesthesia-for-spe...





Surgery 4/27/2015 Mastectomy: Left, Right Dx IDC, 1cm, Stage IA, Grade 1 Surgery
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Feb 19, 2020 06:06PM - edited Feb 19, 2020 06:09PM by magiclight

A continuing post surgical side-effect with the rates not decreasing; Postmastectomy pain syndrome (PMPS) is defined as a chronic (continuing for 3 or more months) neuropathic pain affecting the axilla, medial arm, breast, and chest wall after breast cancer surgery. An incidence of 36% or higher is important to consider.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC60681...

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC47975...


Surgery 4/27/2015 Mastectomy: Left, Right Dx IDC, 1cm, Stage IA, Grade 1 Surgery
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Oct 2, 2020 01:51PM Domzie30218 wrote:

Hi All, the last couple of days I started experiencing some weird sensations on the top of my left boob (cancer side). It's a weird sensation, and it feels like it's on the skin (hard to tell with all the numbness). If I push down on it, it doesn't hurt, but when I slight graze my fingers in the area, that's when I feel it, almost like a sore pain as if it's a bruise or nerve pain. I can also feel it in the shower when water lightly taps on it. There are no lumps or skin changes but I am concerned since it's a new sensation that just started a few days ago. I'm 2 years and 5 months out of my bilateral mastectomy surgery so it seems odd to have a new sensation pop up. I've emailed both my MO and PS and neither seems particularly concerned and just told me to let them know if it gets worse-which to me doesn't seem particularly helpful.

Has anybody else experienced this? I didn't even know about PMPS until I started looking up what this could be. Thanks in advance!

DX at 35 Stage 1A, 1.8cm, 1/16 nodes ER+ PR+ HER- (FISH), Surgeries: BX 4/12/18; Tissue Expander: 4/24/18; Exchange: Sometime in Sept 2018; Chemo: TC 4 cycles June 2018; Radiation: Sometime in the fall
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Oct 2, 2020 07:00PM megryan57 wrote:

Hi Domzie, It doesn;t sound like PMPS it sounds like nerve pain. The chronic pain starts with surgery and doesn't let up for a long time. I'm 12 years out of my double mastectomy with immediate implants and will still get weird nerve sensations in and around that entire area. I also still think that anything around that area is surgery/cancer related. I'm not wrong! But over the years the docs seem unconcerned with these concerns as well. Not a great feeling to be dismissed when my fears are legit! Hopefully this is what it is for you as well:)

Dx 8-18-08, DCIS, grade 2,>7cm, extensive, ER-PR-, bilateral mast with latis dorsi + 350 cc saline implants . 12/18 revision to 375cc silicone implants
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Oct 4, 2020 05:01PM Ginger48 wrote:

Hi Domzie,

It can be that some of your nerves are starting to regenerate in that area. It’s a weird sensation for sure. If you continue to be concerned about it then I would push your doctors to listen to your concerns. I have definitely learned to advocate for myself through this process. Don’t hesitate to trust your gut.

BRCA2+ Knowledge is power! lumpectomy 4/12/11, NSBMX 6/22/11, exchange to implants 10/27/11, ooph 12/7/11 Dx 4/5/2011, IDC, <1cm, Stage IA, 0/1 nodes, ER+/PR+, HER2-
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Oct 6, 2020 11:49AM Domzie30218 wrote:

Thanks Megryan and Ginger,

I’m pretty sure it’s nerve pain but definitely getting it checked out. My goodness, I hope that I get to a point where I don’t freak out because of every little thing! It’s so bad for my mental health

DX at 35 Stage 1A, 1.8cm, 1/16 nodes ER+ PR+ HER- (FISH), Surgeries: BX 4/12/18; Tissue Expander: 4/24/18; Exchange: Sometime in Sept 2018; Chemo: TC 4 cycles June 2018; Radiation: Sometime in the fall
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Oct 24, 2020 12:03PM - edited Oct 24, 2020 12:20PM by magiclight

Today I came across a story about Pete Eckert, a blind photographer and then linked to his portfolio where I found an image that visually describes my PMPS pain.


https://peteeckert.com/portfolio/neurologic-galler...

https://www.cnn.com/style/article/pete-eckert-blin...

Surgery 4/27/2015 Mastectomy: Left, Right Dx IDC, 1cm, Stage IA, Grade 1 Surgery
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Oct 24, 2020 01:39PM WordGirl1968 wrote:

Hello! I’m 17 days post-op from a bmx, no reconstruction. I would say that my pain is ten times worse than it was during the first couple of weeks and this is really throwing me for a loop. I’m experiencing several different kinds of pain: a constant ache across my entire chest and under arms, sudden stabbing pains behind the incision, skin that is very tender to the touch along my upper chest, and a tightness in the incision that feels like I’m being squeezed by a very taut band. Would you say that increasing pain is normal? At first I was pleasantly surprised by the manageable pain of the first couple of weeks (nausea and fatigue from anemia were bigger problems) but now I’m in constant pain that is fairly excruciating. Both of my drains are now out and I saw the nurse practitioner on Thursday because of new swelling and redness on one side. She drew fluid from the edema and that has caused worse pain. I’ve been diligent about not over exerting but I’m not sure I can handle more pain. I’m taking alternating Tylenol and Advil during the day with Vicodin at night but it’s clearly not enough and opioids make me nauseated. Any advice would be greatly appreciated!! Be well, everyone.

Dx 9/11/2020, IDC, Right, 3cm, Stage IIA, Grade 2, 2/2 nodes, ER+/PR+, HER2+ (FISH)
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Oct 24, 2020 02:11PM MinusTwo wrote:

No I would not expect the pain to get worse. The rule of thumb is if something still hurts after 2 weeks, call the doc. You certainly should investigate further & yell louder so they hear you. If it's an infection, you need to be on antibiotics. It not - the root cause needs to be identified. Please do come back & let us know.;

I wouldn't expect that kind of pain to be from lymphadema. But it could be a side issue. Most docs either don't recognize or know much about lymphadema. You should get a referral to a certified, trained LEPT - not just an NP. Below is a link that has great information as well as how to find a certified LE specialist.

https://www.stepup-speakout.org/


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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Oct 24, 2020 02:28PM WordGirl1968 wrote:

minustwo: Thanks. I do have an appt with a pain mgmt doc on Nov 5, specifically to get certified for marijuana use. I’ll have to get a more comprehensive strategy before then, though. You are right.

Dx 9/11/2020, IDC, Right, 3cm, Stage IIA, Grade 2, 2/2 nodes, ER+/PR+, HER2+ (FISH)
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Oct 24, 2020 02:29PM MinusTwo wrote:

Yes you do. Pain management is one thing, but I don't think this much pain is normal. Good luck.

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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Oct 24, 2020 09:16PM magiclight wrote:

Wordgirl, so sorry you are suffering so much this far out from surgery. I think Minustwo has a great point. Need to find out cause of your pain, and do shout louder. PMPS is not usually diagnosed as such 17 days post op. The sooner you can get to cause and treatment the better. Do come back to this tread with your follow-up news.

Surgery 4/27/2015 Mastectomy: Left, Right Dx IDC, 1cm, Stage IA, Grade 1 Surgery
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Oct 25, 2020 02:41AM Rah2464 wrote:

WordGirl I actually struggled the most about week four or five during my recovery. I experienced what I now know to be hypersensitivity. The pain was more of a constant "buzzing" - not an ache or quick zinging pain. Any garment touching me was miserable. I lived in my surgical compression garment for a long time until my nerve response quieted. As others have said, speak up loudly to see if there is an identifiable source of the pain (ie infection). Otherwise ask for help in desensitizing the area. My PS had me start with a very soft washcloth in the shower, transitioning to a dry wash cloth massage. She also had me use a mini vibrator in my pit where the lymph nodes were removed (I wound up having to get a cortisone shot in there it was so fiery). So there are some techniques/things to help but time and in my case compression will be your best friend on this one.

The tightness you describe I think is pretty normal. I know I felt like I had an iron bra on for a while.

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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Oct 25, 2020 11:20AM WordGirl1968 wrote:

thank you!! My surgeon just prescribed Gabapentin (he called on a Sunday morning, very sweet) for nerve pain but said that it can take up to a week to become effective. It’s so bizarre because I had such manageable pain for the first two weeks and now it’s awful. I’m very skittish about medication and its side effects. I didn’t have reconstruction (just “going flat”) and I wonder if the pain is worse because the incision is so tight across my chest.

RAH2464: yes, I can identify with the buzzing feeling but I’d also add a razor blade sensation. You are absolutely right that it’s much worse when it comes into contact with fabric. On my upper chest, several inches above the incision, it almost feels like a bad sunburn. Closer to the incision and around my former breasts is where the constant razor pain is happening. I’ve taken to hugging a pillow when I’m sitting and trying to stay super still. Of course, that runs counter to my need to start moving and doing gentle exercise in order to promote healing.

MAGICLIGHT: yes, I will report back about this. I’m seeing another pain mgmt doc this week and I also have iron infusions scheduled. I’ve been super anemic since surgery and I’m wondering if that’s implicated in my experience of the pain.

Dx 9/11/2020, IDC, Right, 3cm, Stage IIA, Grade 2, 2/2 nodes, ER+/PR+, HER2+ (FISH)
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Oct 25, 2020 02:40PM - edited Oct 25, 2020 02:42PM by magiclight

wordgirl...again so sorry you are experiencing so much post operative pain that you need to be prescribed Gabapentin. Have you looked up that drug and its usages? Research as to causes and treatments are miniscule, so be prepared for a variety of treatments. Hope that gabapentin works for you even if you need increasing dosages.

I have been wearing the Breast Binder with Dri Release for 5 years and that does provide some relief.

Maybe the moderators have posted more current research and treatments that are not experimental but have demonstrated extensive effectiveness about this all too common side effect of cancer treatment.

Many of the PMPS users of this site have gone over to the Facebook Page --Surviving Post Mastectomy Pain Syndrome. Maybe the Mods can explain why that is.

Surgery 4/27/2015 Mastectomy: Left, Right Dx IDC, 1cm, Stage IA, Grade 1 Surgery
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Oct 26, 2020 11:50AM WordGirl1968 wrote:

MAGICLIGHT: Based on cultures from Thursday it looks like I have an infection that is likely causing the pain and swelling, both of which have only gotten worse. I’m starting antibiotics today and hope they kick in right away. Thanks.

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 01:22PM MinusTwo wrote:

Good luck WordGirl. Keep monitoring things. It may require a different RX. Hopefully you won't have to end up with IV antibioics.

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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