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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 07:43PM - edited May 29, 2019 10:25AM 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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Apr 12, 2019 12:13PM LuvMyFam wrote:

Aussie-Cat, isn’t it wonderful to reduce your medication? I’m glad you were able to.

I finally got everything dialed in and I am down to 2 pills in the morning and 6 at night. This is the level I can be “comfortable” at. Not too out of it, tolerable pain.

Another drug that has helped is Horizant. Time-released Gabapentin. It helps so much, but it’s expensive. I can’t wait until the generic form comes out

5/2013 - Added lymphedema to the mix..... Dx 3/20/2012, IDC, 2cm, Stage IIIC, Grade 2, 16/28 nodes, ER+/PR+, HER2- Dx 3/20/2012, IDC, Left, 3cm, Stage IIIC, Grade 3, ER-/PR-, HER2+ (FISH) Targeted Therapy 7/13/2012 Herceptin (trastuzumab) Chemotherapy 7/13/2012 Taxol (paclitaxel) Surgery 1/10/2013 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left, Right Dx 2/28/2016, IDC, Left, 3cm, Stage IV, metastasized to liver, 16/28 nodes, ER+/PR+, HER2- Hormonal Therapy 3/11/2016 Zoladex (goserelin) Hormonal Therapy 3/19/2016 Femara (letrozole)
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Apr 12, 2019 12:25PM Aussie-Cat wrote:

Thanks, LuvMyFam.

I'm glad you were able to reduce your pain meds too. I hope the generic version of time-released Gabapentin comes out soon.

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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Apr 19, 2019 02:02PM magiclight wrote:

Aussi and Luvmy...Good to hear that you both have had some success, i.e. pain relief with Gabapentin. I was on it for two years and it did provide some relief from the PMPS I've had since surgery. Some of the electric shock like pain is diminishing and went off Gaba and found that the tightness and some of the shock like stuff was unchanged when I went off Gaba. I've been rx free about 3 months and still find my pain interferes with quality of life. Like most of us with PMPS, I'm looking for significant relief, but as yet, the search goes on. Hugs to you both for sharing your experiences.

Surgery 4/27/2015 Mastectomy: Left, Right Dx IDC, 1cm, Stage IA, Grade 1 Surgery
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Apr 19, 2019 02:12PM Aussie-Cat wrote:

Thanks, magiclight. I'm glad you've been able to go off your Gabapentin but I'm sorry that pain is still impacting your quality of life. I hope you find something that really helps. I've been having some success with Pain Away spray, which contains the herbs arnica, rosemary and eucalyptus. It seems to give more relief than the Ice Gel I was using and I can spray it directly on my chest so I don't get such dry hands.

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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Apr 19, 2019 02:18PM magiclight wrote:

Aussie..I've not heard of Pain Away spray and getting some relief is a benefit. My medicine cabinet sure looks different since breast cancer came into my life.SickTired

Surgery 4/27/2015 Mastectomy: Left, Right Dx IDC, 1cm, Stage IA, Grade 1 Surgery
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Apr 19, 2019 02:22PM Aussie-Cat wrote:

I don't know if they sell Pain Away spray anywhere but Australia but maybe a health food store near you has something similar. I have got a lot of different medications and creams since my mastectomy too!!

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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Apr 19, 2019 09:47PM runnergirl26 wrote:

Since I have started on gabapentin for neuropathy pain in my feet from the chemo and neuropathic pain in my chest region I have had significant weight gain. I also take arimidex as well. Has anyone else experienced weight gain?

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Apr 20, 2019 02:01AM Aussie-Cat wrote:

runnergirl, I have also experienced weight gain with Lyrica for nerve pain. It's frustrating, isn't it!! I wasn't warned about that side effect. I Googled it and I found a forum of people discussing weight gain with nerve pain drugs. I can't find the link at the moment though. I'm sorry you're going through this.

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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Apr 20, 2019 03:17PM LuvMyFam wrote:

I gained weight, too and am now trying to get it off, but it is so difficult. I feel like I take one step forward and 2 steps back! I really had to lower my calories. I can’t eat too much or the weight goes right back.

Has anyone tried Watsu? When I am in the water, it is the ONLY time I am not in pain. The therapist who used to do it cannot anymore, so I’m bummed.

I guess I just have to stick with the Amitriptaline that helps me get a good nights rest.

5/2013 - Added lymphedema to the mix..... Dx 3/20/2012, IDC, 2cm, Stage IIIC, Grade 2, 16/28 nodes, ER+/PR+, HER2- Dx 3/20/2012, IDC, Left, 3cm, Stage IIIC, Grade 3, ER-/PR-, HER2+ (FISH) Targeted Therapy 7/13/2012 Herceptin (trastuzumab) Chemotherapy 7/13/2012 Taxol (paclitaxel) Surgery 1/10/2013 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left, Right Dx 2/28/2016, IDC, Left, 3cm, Stage IV, metastasized to liver, 16/28 nodes, ER+/PR+, HER2- Hormonal Therapy 3/11/2016 Zoladex (goserelin) Hormonal Therapy 3/19/2016 Femara (letrozole)
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Apr 20, 2019 09:46PM - edited Apr 20, 2019 09:47PM by magiclight

I do believe that a good nights rest helps me cope with the pain during the day. If Amitriptaline works for you, then staying on it seems like a great decision.

Surgery 4/27/2015 Mastectomy: Left, Right Dx IDC, 1cm, Stage IA, Grade 1 Surgery
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May 13, 2019 08:48PM OhappyDay wrote:

Hi there! I’m only almost 2 months out from mastectomy and silicon reconstruction. How do I know if it’s this or normal healing pain this soon? I also have fibromyalgia, so I deal with pain daily. Could the pain be from this or made worse because of it? I have the iron bra feeling and pain. Would taking the implants out help

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May 13, 2019 09:35PM Moderators wrote:

Hi Ohappyday! We want to welcome you to our community, although we're so sorry for what you're going through. Everyone heals from their surgery differently, but it can take some time for the pain to completely subside and for you to start feeling like yourself. If you haven't already, we urge you to discuss the pain you're experiencing with your surgeon. It's very possible that the pain is associated with your ongoing recovery, but your surgeon should be made aware of any pain or other side effects that don't feel normal to you. They may be able to come with a plan to help!

The Mods

To send a Private Message to the Mods: community.breastcancer.org/mem...
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May 14, 2019 12:37AM MinusTwo wrote:

It's also possible you have some lymphadema. Did you have chemo? Did you have radiation? If so that's another issue as the tissue changes. Good call Mods. Most docs say AT LEAST SIX WEEKS, but if you haven't seen your doc regularly since the last surgery, do make an appointment.

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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May 14, 2019 05:29AM Rah2464 wrote:

OHappyDay I am closing in on a year post BMx. I definitely had the iron bra feeling at two months. I suspect it is part of the healing process. I am much better now, although I do still have issues with some scar tissue that oncological massage and exercising help to resolve. Definitely discuss what you are feeling with your doctor. She/He will be best to guide you to any next steps to take. Wishing you well.

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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May 27, 2019 03:40PM MBPooch wrote:

Wondering if anyone has experienced anything similar. I'm a year and a half out from BMX due to DCIS and Pagets with direct to implant. My recovery was surprisingly easy but recently I've noticed some changes on the left side, cancer side. It started with an annoying itch sporadically during the day. That lasted about a week. This past week there's more of a general tight feeling along the outer left side. Almost along the ridge of the implant. Not really pain, just a noticeable tighter feeling and a little sore here and there along that left side. I'm thinking its nerve regeneration but haven't seen any similar posts. My breasts look and feel the same but that left side is just a bit tighter and more sore. More uncomfortable in a sports bra and almost unnoticeable when not wearing a bra at all. Anyone else experience anything like this and if so how long did it last? Did it go away on its own or did you go in?k. Thanks in advance!

Dx 10/16/2017, DCIS/Paget's, Left, 1cm, Grade 3, 0/3 nodes, ER+/PR+ Surgery 11/29/2017 Lymph node removal: Sentinel; Mastectomy: Left, Right; Prophylactic mastectomy: Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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May 27, 2019 06:00PM MinusTwo wrote:

MB - it's hard to tell w/o your diagnosis and treatment posted. When was your surgery? Did you have chemo or are you taking Als? Did you have radiation? Tightness happens over & over to my radiated side if I don't continually stretch. If it lasts more than two weeks, the recommended wisdom if to make a doc appointment.

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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May 27, 2019 10:20PM bella2013 wrote:

MBPooch,

I am 15 months post BMX with DIEP Flap reconstruction and I recently started having the tight band feeling I had post surgery. It lasted a couple of days and then eased off. I believe that healing is a process and on many levels we feel like we are healed but there’s always more healing that needs to occur.

If you are concerned...check with your doctor

Diagnosed at 60 years old. Oncotype Score=14. Dx 12/4/2017, IDC, Left, 4cm, Stage IB, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 1/3/2018 Lumpectomy: Left; Lymph node removal: Sentinel Surgery 2/21/2018 Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Hormonal Therapy Arimidex (anastrozole)
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May 28, 2019 02:48AM aliciacantu84 wrote:

hello everyone

I had bilateral mastectomy with reconstruction one year ago, now ive been experiencing burning and shooting sensation it’s not super painful totally bearable but scary.

Is this normal? I have it almost every night.. also pain and itching around the scars

Dx 3/30/2018, DCIS, Right, 4cm, Stage 0, Grade 3 Surgery 3/30/2018 Lumpectomy: Right Surgery 6/6/2018 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
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May 28, 2019 10:42AM MBPooch wrote:

MinusTwo - Updated my signature and I agree that if it doesn't resolve this next week it's time to get it checked out. Wondering if I was just overdoing it with arm weights and that side is more sensitive due to the SNB.

aliciacantu84 - I've had that shooting and burning before. Sometimes when I over stretch too much.

Dx 10/16/2017, DCIS/Paget's, Left, 1cm, Grade 3, 0/3 nodes, ER+/PR+ Surgery 11/29/2017 Lymph node removal: Sentinel; Mastectomy: Left, Right; Prophylactic mastectomy: Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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May 29, 2019 08:14AM Lezza13 wrote:

aliciacantu84 - everything you are experiencing is normal. It all is tolerable and it comes and goes. I sometimes will just rub the areas of the scars and that seems to help. . I am sure you can find ways to deal with it. It is annoying for sure

MBPooch- the tightness under my arms seems to linger. I try not to lift heavy weights because then it does hurt.. I do not have implants so I cannot say much about that area.. I would go to the doctor and get it checked out.

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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Aug 19, 2019 01:07PM magiclight wrote:

Is anyone using CBD oil for PMPS? I've been researching CBD oils from qualified and verified sources, but would love to hear if anyone is using it and finding relief, or not getting relief from PMPS pains.

Surgery 4/27/2015 Mastectomy: Left, Right Dx IDC, 1cm, Stage IA, Grade 1 Surgery
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Aug 19, 2019 01:22PM BarbaraT54 wrote:

hi- I’ve tried several cbd oils that did not work. However, the oil with medical marijuana oil that contains THC has helped me. Unfortunately, I started getting terrible headaches. I can’t win!

It’s worth a try. My pain also consists of terrible scar tissue pain from two ovarian cancer surgeries plus the FLAP reconstruction, but maybe it will help you. Worth a try!


Good luck!


Bar

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Aug 19, 2019 04:09PM magiclight wrote:

Barbara...you are so right - sometimes just can't win.

Surgery 4/27/2015 Mastectomy: Left, Right Dx IDC, 1cm, Stage IA, Grade 1 Surgery
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Oct 3, 2019 02:02PM FrenchPorsche wrote:

Hi. I’m new to this part of the forum. I’m coming up six months since my mastectomy with immediate silicone implant. In the past few days I’ve been getting intermittent periods of pain where it comes in waves and sort of takes my breath away (eases off after a few mins and then comes back again a few minutes later). I haven’t had this type of pain for months and when I did, it didn’t come in waves like this. It’s not a sharp pain, more deep, slow and intense. I don’t have any noticeable swelling or anything I can see that’s different (and had no rads or chemo). Has anyone experienced this and have any insights for me?

Dx 3/13/2019, DCIS, Right, Stage 0 Dx 3/27/2019, DCIS, Right, 6cm+, Stage 0 Surgery 4/17/2019 Lymph node removal: Sentinel; Mastectomy: Right; Reconstruction (right): Silicone implant
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Oct 3, 2019 03:04PM - edited Oct 3, 2019 03:07PM by Yogatyme

This Post was deleted by Yogatyme.
Yogatyme Surgery 3/2/2019 Prophylactic ovary removal Dx 7/19/2019, IDC: Papillary, Right, <1cm, Stage IA, Grade 2, 0/5 nodes, ER+/PR+, HER2- Surgery 8/12/2019 Mastectomy: Left, Right
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Oct 11, 2019 01:50PM Ginger48 wrote:

I had that feeling and was told it could be due to nerves that are regenerating. It felt like little zings.I would check in with your doctor if it continues to bother you.

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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Nov 12, 2019 09:18AM GoMama wrote:

I've been getting intermittent pain and some zingers/zaps lately. I had my mastectomy in late June. I feel for those of you who've had it for years. I did find this article.

https://www.curetoday.com/community/bonnie-annis/2017/05/understanding-post-mastectomy-syndrome


I got cancer, cancer didn't get me. Dx 5/9/2019, LCIS/ILC, Right, 2cm, Stage IIA, Grade 2, 0/6 nodes, ER+/PR-, HER2- Surgery 6/24/2019 Lymph node removal: Sentinel; Mastectomy: Right Chemotherapy 8/13/2019 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Chemotherapy 9/24/2019 Abraxane (albumin-bound or nab-paclitaxel), Cytoxan (cyclophosphamide)
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Nov 12, 2019 11:03AM Aussie-Cat wrote:

Thanks GoMama, good article.

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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Nov 30, 2019 12:30PM Lezza13 wrote:

Thanks GoMama, an excellent article. It sure explains a lot! As the phrase goes: The nerve of those nerves!

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 12, 2019 04:53PM Soniatoronto wrote:

I wrote in another forum, the "Post Mastectomy Pain Syndrome" about the pain after mastectomy! We created a Facebook group, a closed group of almost 80 Ladies! A place to get support, to vent and eventually find answers! The group name is Surviving Post Mastectomy Pain Syndrome (PMPS) and the address is : https://www.facebook.com/groups/759940397434876/

Also we have another page, a Public page where you can find articles, and give the chance to your friends to see what is to live with Pain!

The description of the group is " An open group to share, inform, and raise awareness for Breast Cancer Warriors who have Post Mastectomy Pain Syndrome (PMPS). We welcome patients, caregivers, family, friends, all those who are touched or work with breast cancer patients who have PMPS, and hope for a cure.

Many women suffer without knowing about PMPS, an overwhelming number where not warned about the risks of getting PMPS. There is no cure. There are limited and often horrific procedures to try to control the symptoms.

We need voices and champions for our cause!

https://www.facebook.com/groups/775398739265638/

Please spreed the word!

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