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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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Aug 27, 2018 06:08PM nash wrote:

Thanks for the update, Calee! My neuro had told me it could take a month to feel effects, so who knows!

I just got my second round of Botox today. She increased the number of units, and only injected into my back. The LD flap side of my back has been in constant spasm since the surgery May 2015. She thinks maybe my back muscles are affecting my front and side.

If the Botox doesn’t work, I give up. I’ve tried almost everything, and now that I’m stage IV, I want to minimize time spent in drs offices.

I’m sorry there are so many of us in this pmps boat.



Stage IV Pleomorphic ILC, initially diagnosed at age 38 Dx 6/7/2007, ILC, Left, 2cm, Stage IV, metastasized to bone, Grade 2, 0/4 nodes, ER+/PR+, HER2- (FISH) Surgery 7/19/2007 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy 8/1/2007 CAF Radiation Therapy 12/27/2007 Whole-breast: Breast, Chest wall Hormonal Therapy 3/1/2008 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 4/24/2015, ILC, Left, 1cm, Stage IV, metastasized to other, Grade 2, 0/10 nodes, ER+/PR+ Surgery 5/15/2015 Mastectomy; Reconstruction (left): Latissimus dorsi flap Dx 2/1/2018, ILC, Right, 6cm+, Stage IV, metastasized to other, Grade 3, ER+/PR+ Chemotherapy 2/15/2018 Cytoxan (cyclophosphamide), Taxol (paclitaxel), Taxotere (docetaxel) Dx 6/20/2018, ILC, Both breasts, 6cm+, Stage IV, metastasized to brain/bone, Grade 3, ER+/PR+ Targeted Therapy 7/1/2018 Ibrance (palbociclib) Dx 7/17/2020, ILC, Both breasts, 6cm+, Stage IV, metastasized to brain/bone, Grade 2, ER+/PR+, HER2- (FISH) Chemotherapy 7/17/2020 Xeloda (capecitabine) Radiation Therapy 7/23/2020 Hormonal Therapy Faslodex (fulvestrant), Zoladex (goserelin) Radiation Therapy External: Brain
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Aug 28, 2018 03:26PM klgnyc wrote:

Wow, Calee, that's lots more Botox than I got. I'm praying it works for you, and I'm also going to ask my doc why he didn't give me that much. Maybe it would have made a difference ;)


K

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Aug 28, 2018 05:52PM magiclight wrote:

Thank you Calee, Barbara..., klgnyc and others for sharing your stories about your painful post mastectomy pain and all the treatments you have tried. Every time I read this I look for some encouraging success story, but so far nothing consistent. I'm three years post mastectomy without implants and like each of you live with daily pain. I do take Neurontin and have for the most part adjusted to the grogginess which varies daily as I vary my dose depending on the pain level. Rarely do I skip a day and vary between 300-1200mg a day. I have noticed some relief with OTC ibuprofen but must switch to acetaminophen [Tylenol] so as not to increase bleeding risk with by blood thinner. Nash, I hope you get relief from your pain with the Botox.

Surgery 4/27/2015 Mastectomy: Left, Right Dx IDC, 1cm, Stage IA, Grade 1 Surgery
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Aug 28, 2018 06:55PM nash wrote:

magiclight, thank you. I think about you often and wish you could get some relief.

I’m happy to report that the day after the second round of Botox that I *think* it’s taking the edge off of my back tightness/spasms. I will report back if it’s a consistent trend this week and if it helps my front/side at all


Stage IV Pleomorphic ILC, initially diagnosed at age 38 Dx 6/7/2007, ILC, Left, 2cm, Stage IV, metastasized to bone, Grade 2, 0/4 nodes, ER+/PR+, HER2- (FISH) Surgery 7/19/2007 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy 8/1/2007 CAF Radiation Therapy 12/27/2007 Whole-breast: Breast, Chest wall Hormonal Therapy 3/1/2008 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 4/24/2015, ILC, Left, 1cm, Stage IV, metastasized to other, Grade 2, 0/10 nodes, ER+/PR+ Surgery 5/15/2015 Mastectomy; Reconstruction (left): Latissimus dorsi flap Dx 2/1/2018, ILC, Right, 6cm+, Stage IV, metastasized to other, Grade 3, ER+/PR+ Chemotherapy 2/15/2018 Cytoxan (cyclophosphamide), Taxol (paclitaxel), Taxotere (docetaxel) Dx 6/20/2018, ILC, Both breasts, 6cm+, Stage IV, metastasized to brain/bone, Grade 3, ER+/PR+ Targeted Therapy 7/1/2018 Ibrance (palbociclib) Dx 7/17/2020, ILC, Both breasts, 6cm+, Stage IV, metastasized to brain/bone, Grade 2, ER+/PR+, HER2- (FISH) Chemotherapy 7/17/2020 Xeloda (capecitabine) Radiation Therapy 7/23/2020 Hormonal Therapy Faslodex (fulvestrant), Zoladex (goserelin) Radiation Therapy External: Brain
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Aug 28, 2018 08:48PM klgnyc wrote:

Magiclight, I'm sure you've described your pain in prior posts, but do you mind sharing what it feels like again? I want these things OUT and I'm wondering if your pain is similar to mine even without impants.

Gosh, so many of us are just grasping at straws, aren't we?

If someone had told me this journey would look like this, I definitely would not have done recon. And all the feel good, Susan G. Komen, wear pink for breast cancer stories tell you how you have some surgery, throw in some implants, and go on with your life. Yet all of us are in pain and none of us can put this in our rear-view mirror so it's really hard to go on with our lives. I'd be happy to feel 25% better which is a pretty low bar, and I'm sure you all feel the same...

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Aug 28, 2018 09:03PM Aussie-Cat wrote:

I'm sorry for all the women who are still in so much pain. I am ten weeks post mastectomy and my pain is not nearly as bad as it was a few weeks ago. The Lyrica, menthol gel and massage have been helping and I hope they will continue to reduce the pain even more. I wanted to give hope to those who need it.

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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Aug 28, 2018 10:57PM nash wrote:

I so wish I was one of those women who was helped by anything. Lyrica, Gapabentin, massage, acupuncture, hypnosis, time, etc.

I have no doubt that my LD flap/PMPS/reconstruction revision woes directly contributed to my current Stage IV diagnosis. I was originally diagnosed in 2007. Recurred locally in 2015. Unilateral LD flap reconstruction, which was a complete disaster for me physically. The lift on the native side a year later masked my new primary. It quickly spread to my brain, most likely a combo of the stress from the PMPS/LD flap debacle and the inflammation from the lift.

I'm happy for the women who get better with time and the run of the mill therapies. I'm obviously an outlier.

Stage IV Pleomorphic ILC, initially diagnosed at age 38 Dx 6/7/2007, ILC, Left, 2cm, Stage IV, metastasized to bone, Grade 2, 0/4 nodes, ER+/PR+, HER2- (FISH) Surgery 7/19/2007 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy 8/1/2007 CAF Radiation Therapy 12/27/2007 Whole-breast: Breast, Chest wall Hormonal Therapy 3/1/2008 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 4/24/2015, ILC, Left, 1cm, Stage IV, metastasized to other, Grade 2, 0/10 nodes, ER+/PR+ Surgery 5/15/2015 Mastectomy; Reconstruction (left): Latissimus dorsi flap Dx 2/1/2018, ILC, Right, 6cm+, Stage IV, metastasized to other, Grade 3, ER+/PR+ Chemotherapy 2/15/2018 Cytoxan (cyclophosphamide), Taxol (paclitaxel), Taxotere (docetaxel) Dx 6/20/2018, ILC, Both breasts, 6cm+, Stage IV, metastasized to brain/bone, Grade 3, ER+/PR+ Targeted Therapy 7/1/2018 Ibrance (palbociclib) Dx 7/17/2020, ILC, Both breasts, 6cm+, Stage IV, metastasized to brain/bone, Grade 2, ER+/PR+, HER2- (FISH) Chemotherapy 7/17/2020 Xeloda (capecitabine) Radiation Therapy 7/23/2020 Hormonal Therapy Faslodex (fulvestrant), Zoladex (goserelin) Radiation Therapy External: Brain
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Aug 29, 2018 03:58AM BarbaraT54 wrote:

Hi- I am so sorry for what you are going through. My pain and lymphedema are a product of a prophylactic double mastectomy with a FLAP, as I had ovarian cancer twice and am brca positive.

I’m sure your Drs would never admit the role the surgeries had regarding your recurrence. My plastic surgeon told me he could fix my pain and swelling with liposuction.

I’ve tried everything too- medical marijuana helps a little at night. Have you tried ?

My thoughts and prayers are with you.

Best,

Bar

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Aug 29, 2018 09:26AM nash wrote:

Thanks, Barbara. Yes I tried mj. It had no effect for me.

I just had my second round of Botox, and it seems to be helping my back slightly. My back has been in constant spasm on the LD flap side ever since the surgery over three years can ago. My front and side don’t feel better yet.

No, my drs would never admit their role in my stage IV situation. I’d fired that team before the new primary/brain mets anyhow. My PS kept acting like I was overreacting about the post op tightness—she said I was like the princess and the pea. My former onc said there was nothing physically wrong with me and that my mind was just not accepting the LD flap surgery. Horrible drs

Stage IV Pleomorphic ILC, initially diagnosed at age 38 Dx 6/7/2007, ILC, Left, 2cm, Stage IV, metastasized to bone, Grade 2, 0/4 nodes, ER+/PR+, HER2- (FISH) Surgery 7/19/2007 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy 8/1/2007 CAF Radiation Therapy 12/27/2007 Whole-breast: Breast, Chest wall Hormonal Therapy 3/1/2008 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 4/24/2015, ILC, Left, 1cm, Stage IV, metastasized to other, Grade 2, 0/10 nodes, ER+/PR+ Surgery 5/15/2015 Mastectomy; Reconstruction (left): Latissimus dorsi flap Dx 2/1/2018, ILC, Right, 6cm+, Stage IV, metastasized to other, Grade 3, ER+/PR+ Chemotherapy 2/15/2018 Cytoxan (cyclophosphamide), Taxol (paclitaxel), Taxotere (docetaxel) Dx 6/20/2018, ILC, Both breasts, 6cm+, Stage IV, metastasized to brain/bone, Grade 3, ER+/PR+ Targeted Therapy 7/1/2018 Ibrance (palbociclib) Dx 7/17/2020, ILC, Both breasts, 6cm+, Stage IV, metastasized to brain/bone, Grade 2, ER+/PR+, HER2- (FISH) Chemotherapy 7/17/2020 Xeloda (capecitabine) Radiation Therapy 7/23/2020 Hormonal Therapy Faslodex (fulvestrant), Zoladex (goserelin) Radiation Therapy External: Brain
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Aug 29, 2018 09:32AM Aussie-Cat wrote:

Nash, I'm so sorry that your doctors said you were overreacting and there was nothing physically wrong with you! How would they know!!! I'm glad you fired them. I agree about horrible doctors! I hope your current doctors are a lot better and treat you with respect as you deserve. We all deserve to be treated with respect and believed about the pain and discomfort we're feeling.

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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Aug 29, 2018 09:43AM BarbaraT54 wrote:

My plastic surgeon was so arrogant - denying breast and abdominal lymphedema even existed. He just dwelled on my scar tissue like it was my fault. Meanwhile, he repaired a hernia caused from ovarian surgery and it was back in 6 Months.

He never recommended PT or massage or seeing a breast rehabilitation dr, although there was one in the same building.

Living with this pain nonstop since July 2013 is very frustrating when nothing helps.

It is great to read some women get relief. I do see an energy healer, which overall does make me feel a little lighter mentally and physically.

Have you ever seen an integrative MD regarding the cancer and pain?

Barb



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Aug 29, 2018 11:49AM - edited Aug 29, 2018 11:59AM by magiclight

klgnyc: As to your question re: my pain. It varies from 1) tightness that spreads across my chest and across my back that makes me work to take deep breaths; 2) prickly pain in the back of my upper arms but mostly on the L side (sentinel node removed from both sides) 3) deep pain/soreness that feels like I've been kicked in the chest. 3) when all 3 or more are present I could just scream. My back tightness is lessened with a heating pad, a hot bath or jacuzzi. Need I say I love my tub and set candles, music and a generous pour of lavender baby bath into the tub.

I am buoyed up by all of you sharing what you life is like in this boat. Finding my breath in the center from where this pain originates and spreads opens a crack and lets a lighter feeling reside.

This image is from Science Friday art related to Steven Hawking's book.

Surgery 4/27/2015 Mastectomy: Left, Right Dx IDC, 1cm, Stage IA, Grade 1 Surgery
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Aug 29, 2018 05:16PM Calee65 wrote:

Magic light...beautiful picture..makes me feel serene!

Makes me mad that your doctors don’t listen to you all. Mine said “they’ve never had a patient with pain like mine, but everyone is different so they believe it’s real”. Which helps a lot mentally to know you have support!

Had Botox a week ago tomorrow, I feel a small amount of relief so far...hoping it continues more, wish it worked for everyone

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Aug 29, 2018 07:07PM klgnyc wrote:

Having done everything - PT and massage, creams, Botox, acupuncture, nerve blocks, spinal block, revision surgery, Lyrica, and now the Gabapentin - I am absolutely the patient docs hate. Thing is, I did everything that wasn't meds before finally trying the meds. And even now I'm on a super low dose of Gabapentin and doing hypnosis in the hope I can stop meds eventually. FYI, I have a bit of lymphedema in my arm, too, but that doesn't cause me pain, and I wear fun compression garments (designed by LympheDivas but cheaper on Lymphedema.com) so it looks like I'm all tatted up ;)

My physical rehab doc said there's no reason I should be in pain, so perhaps my brain is feeling pain that is no longer there; he's the one who referred the therapist who does hypnosis. That may be true, but the pain sure feels there to me and it makes me angry which is apparently inhibiting treatment.

I don't wish this on anyone, but somehow it makes it easier to know that there are other women out there who get it. Who don't think I'm being selfish when I complain about all of the ridiculous complications because, after all, I should be happy to be upright and breathing. Of course I am, but I also want quality of life as we all do...

I'm not a "why me" person so I never asked that question. And with breast cancer affecting one in eight women, why not me? I do ask why can't I find some way to feel better and move forward. Often.

Thank you all for just being there. It helps.

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Aug 30, 2018 12:53PM AliceKo wrote:

That's right "shut up and be greatful". I hear that a lot, from other people, patients and doctors. At least I can see I am not the only one. Sorry for all of us having to deal with after effects

Dx 2/2017, IDC, Left, Stage IIB, 0/2 nodes, ER+/PR+, HER2+ Surgery 6/21/2017 Mastectomy: Left; Reconstruction (left): Fat grafting, Silicone implant, Tissue expander placement Surgery 7/16/2019 Reconstruction (left): DIEP flap Targeted Therapy Herceptin (trastuzumab) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Chemotherapy Taxol (paclitaxel)
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Sep 11, 2018 11:19AM DKK wrote:

So glad I found this topic and thanks to all of your posts. You have reassured me that I am not out of my mind. I have told my oncologist, radiologist, surgeon and medical doctor about my burning, stabbing, VERY sensitive pain in my armpit and across my left breast where I had my lumpectomy and sentinel nodes removed. I was recovering well did my chemo & radiation. 9 monthes after my surgery this pain starts.

All the drs say the same thing.... Take Tylenol, it will gradually go away. OTC pain relievers do not help the pain. Thanks to you ladies I have tried some topical rubs that dull the pain for an hour or so.. Better than no relief.

I am beginning to wonder if the emotional/ mental fact that nothing is helping and my doctors are ignoring that fact of my nerve damage is making me fell like crap worse than my nerve pain itself.

I am so afraid of taking pain meds, they always put me to sleep or make me feel woooozy.

At least on this site I can see there is some home. I just can't settle for the commits from the Drs. Take Tylenol and wait. It has been 4 mos now in this pain. Thanks for letting me rant,,


Dx 8/1/2017, IDC, Left, 1cm, Stage IIIA, 4/14 nodes, ER+/PR+, HER2- (FISH) Surgery 9/1/2017 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy 9/25/2017 AC + T (Taxotere)
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Sep 13, 2018 01:05PM AliceKo wrote:

DKK, sorry to hear that you have joined our pain club. Indeed Tylenol is probably not something that will help you. The treatment is so unkind that while it treats us, it also leaves us sick. The new trend is to reduce treatment for those who are candidates and who are willing to take on more risk. Your pain is most likely the result of radiation, which shows itself months after the actual treatment. Did your radiation oncologist at least mentioned it? When I met with radiation oncologist she talked about it like it was a gift straight form heaven and not something dangeous.

Physical therapy may be worth a try (not for me though).Like I wrote earlier, I do craniosacral soft tissue work and accupuncture. I have literally spent thousands of dollars, way more than what they paid the surgeon, to correct what they have done and reduce my pain and discomfort.

Good luck

Dx 2/2017, IDC, Left, Stage IIB, 0/2 nodes, ER+/PR+, HER2+ Surgery 6/21/2017 Mastectomy: Left; Reconstruction (left): Fat grafting, Silicone implant, Tissue expander placement Surgery 7/16/2019 Reconstruction (left): DIEP flap Targeted Therapy Herceptin (trastuzumab) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Chemotherapy Taxol (paclitaxel)
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Sep 13, 2018 02:03PM MinusTwo wrote:

DKK - my RO told me that rads works like a rubber band. I'll have to stretch the arm & chest every single day or the muscles & tendons will start to pull back. I know it causes pain.

Also you might consider going to a trained lymphadema physical therapist. I have breast & truncal LE that can cause continuing pain. I posted a link below that has lots of good recommends & tips. Several of our BCO women were involved in creating this site.

https://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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Sep 17, 2018 12:29PM AliceKo wrote:

Thank you, Minus Two. Thankfully I have no lymphedema (very lucky and because I insisted on sentynel lymph node biopsy and no radiation. Was not so lucky with the PMP. My craniosacral therapist does lymph drainage, so I get it anyways

Dx 2/2017, IDC, Left, Stage IIB, 0/2 nodes, ER+/PR+, HER2+ Surgery 6/21/2017 Mastectomy: Left; Reconstruction (left): Fat grafting, Silicone implant, Tissue expander placement Surgery 7/16/2019 Reconstruction (left): DIEP flap Targeted Therapy Herceptin (trastuzumab) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Chemotherapy Taxol (paclitaxel)
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Sep 25, 2018 05:05AM Starmusic wrote:

Thank you, all, for such beautiful support!

My story seems a little different from what I have read, so I don’t know if this is PMPS or not! I am trying to find out the cause of these strange stinging, burning pains and tingling right around the mastectomy site and below my left shoulder FIVE YEARS LATER! Thankfully, no pain during those 5 years. That’s what seems different from what I’ve read here and in articles. So maybe it is not related to mastectomy.It suddenly started about a month ago, and goes on intermittently all day long. Doctors have not heard of this being related to mastectomy. Chest X-ray negative, CT tomorrow.

Has anyone else had this experience?

After Lumpectomy- weird tingly pains.

Mastectomy- no pain!

Five years later - weird, burning, stinging, tingly pains. Thank God, not so bad they keep me awake at night!

Dx 4/3/2013, DCIS, <1cm, Stage 0, Grade 2, 0/4 nodes, ER+/PR-, HER2- Surgery 5/12/2013 Lumpectomy: Left; Lymph node removal: Left, Sentinel Surgery 9/8/2013 Mastectomy: Left
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Oct 5, 2018 04:11PM Moderators wrote:

Hi folks! We thought you'd be interested in this new BCO Podcast:

Post-Mastectomy Pain Syndrome: What It Is and How It's Treated

October 5, 2018



Stubblefield

Michael Stubblefield, M.D. is medical director of cancer rehabilitation at the Kessler Institute for Rehabilitation in New Jersey and the national medical director for Select Medical's ReVital Cancer Rehabilitation program. He is known around the world for his expertise in the identification, evaluation, and rehabilitation of pain and functional disorders caused by cancer and cancer treatments, particularly problems caused by radiation and chemotherapy. Dr. Stubblefield is an accomplished researcher and has published extensively on medical rehabilitation, oncology, pain management, palliative care, and neurophysiology.

Listen to the podcast to hear Dr. Stubblefield explain:

  • the definition of post-mastectomy pain syndrome and the different ways it affects people
  • how surgeries and radiation can cause this pain syndrome
  • treatments for post-mastectomy pain syndrome
  • the three things that anyone experiencing post-mastectomy pain syndrome should know

Running time: 29:38

Listen or read the transcript now

.

To send a Private Message to the Mods: community.breastcancer.org/mem...
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Oct 7, 2018 12:59PM LiLi-RI wrote:

Thank you so much for this information! I am feeling helpless at this point. I am now experiencing debilitating chest spasms in addition to overall pain from multiple surgeries. I would love a recommendation for a doctor close to RI? Many thanks

Dx 5/31/2013, IDC, <1cm, Grade 2, ER+/PR+, HER2- Surgery 6/12/2013 Lumpectomy: Right; Lymph node removal: Right, Sentinel Surgery 7/8/2013 Lumpectomy: Right Radiation Therapy 8/28/2013 Whole-breast: Breast Dx 4/30/2014, ILC, ER+/PR+, HER2- Surgery 6/16/2014 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Surgery 8/23/2014 Reconstruction (right) Surgery 10/1/2017 Reconstruction (left): Body lift perforator flap , Fat grafting; Reconstruction (right): Body lift perforator flap , Fat grafting
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Oct 9, 2018 12:31PM magiclight wrote:

I may be missing something in the podcast related to treatments for PMPS but I could not detect any treatment that is successful across the board and as he states "because our definitions for it [PMPS] are a bit of a moving target and it's not something that is really well studied, we don't have a great answer." I was so looking for better data on treatments that go beyond a hit or miss approach.

Maybe because I've had my pain since surgery and I've learned to deal with it on most days, I'm afraid to try some of the invasive procedures he described that could make my pain worse.

Surgery 4/27/2015 Mastectomy: Left, Right Dx IDC, 1cm, Stage IA, Grade 1 Surgery
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Oct 9, 2018 12:38PM Aussie-Cat wrote:

magiclight, I agree it's disappointing that it isn't clearer what treatments will help PMPS. Have you tried PT and acupuncture? I haven't tried them but I was wondering if acupuncture may help me. I haven't heard of anyone in Australia offering specific PT or massage for PMPS. I wish you the best in finding treatment that works for you.

I have felt less sore since I worked out that rather than putting a little cushion between me and the seat belt in the car, it feels better to have the cushion on my side to make the seat belt stick out and not touch my chest.

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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Oct 9, 2018 12:49PM magiclight wrote:

Aussie, I've not tried acupuncture, but I did do PT after surgery to get full range of motion, which I still have. Also, I tried fascia massage and that did not help but I've been thinking I might try that again however at $240 per treatment and needed about a dozen treatments that is prohibitive for me. I am on Gabapentin and I do wear an elastic binder which I find does give some relief from the nerve tingling. Also, I only wear very smooth polyester or silk next to my skin (binder goes on top of that) and very loose fitting tops with raglan sleeves. I've also tried prescription pain patches - no relief. By the evening, a hot bath and glass of wine does help ease some of the related muscle tension in my back.

Are you working out with weights?

Surgery 4/27/2015 Mastectomy: Left, Right Dx IDC, 1cm, Stage IA, Grade 1 Surgery
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Oct 9, 2018 12:54PM Aussie-Cat wrote:

magiclight, I'm sorry the fascia massage is so expensive and it didn't help you when you tried it. No, I'm not working out with weights but I do some stretching and self massage of my chest. Why do you ask? I find using a menthol gel on my chest helps, plus I see an osteopath every 3 weeks and I don't have limited movement from surgery. The Lyrica I'm taking (150mg twice a day) limits the amount of pain but doesn't make it go away.

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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Oct 9, 2018 02:41PM Calee65 wrote:

I take Gabapentin..1200 ml daily and it helps with the pain but it doesn’t go away completely. I also use Magnesium cream...that ‘calms’ the pain when it’s screaming..but it doesn’t last for very long. I just started cold laser therapy, first 3 treatments I could tell immediately ‘something’ was happening and it felt somewhat better. Then 2 days later it was screaming again, so Dr. set the therapy for inflammation, and it did feel better after that treatment....so I’m going to keep trying them and see if it will help with the pain long term

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Oct 9, 2018 02:46PM Aussie-Cat wrote:

Calee65, it's a pity that most treatments don't help for very long. It's interesting about the magnesium cream. I hope the cold laser therapy helps you a whole lot!! I haven't heard of that before and I don't know if they have that here.

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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Oct 9, 2018 04:57PM magiclight wrote:

Aussie...I asked about working out with weights because I may have misunderstood it when you wrote " I have felt less sore since I worked out". On rereading the rest of the sentence is " putting a little cushion..." on seat belt. So much for my focus SillyHeart

Surgery 4/27/2015 Mastectomy: Left, Right Dx IDC, 1cm, Stage IA, Grade 1 Surgery
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Oct 9, 2018 05:04PM Aussie-Cat wrote:

LOL, magiclight. That's okay.

Winking

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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