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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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Oct 12, 2018 07:48PM Ginger48 wrote:

starmusic- I wonder if it could be nerves that are regenerating and causing those sensations?

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 12, 2018 08:04PM - edited Oct 12, 2018 08:07PM by JO-5

I haved pain 24/7....partly PMPS, partly from the lat flap, partly from the graft in the center of my chest. I don't wear a seat belt ..... I'll just pay a fine, and hope and pray I'm not in an accident.

Seat belts hit right on the graft and would have it cracked and bleeding in no time at all. A pillow puts too much pressure on the graft.

Years ago you could give the seatbelts a sharp yank and they stayed loose....but not anymore.

Joanne


IDC 04 Stage 1 Grd 3 no nodes Lumpectomy rads plus boosts ER+PR+HER- AI 5 yr 2014 secondary angiosarcoma from rads lumpectomy recurrence 1 yr Mastectomy with lat flap 1/2 flap went necrotic skin graft to center of chest.
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Oct 13, 2018 12:23AM magiclight wrote:

J0 - Sorry you are in continuous pain. I cannot use the seat belt in the usual way, but do want to use it for safety. What I've found to help keep the chest restraint part of the seatbelt loose is to attach a very large metal binder clip (binder clip is what the office supply store calls them) close to the top part of the belt to prevent it from sliding to the tight position. Obviously, this is not as safe as the auto-adjusting mechanism, but I feel it gives me added security without the seatbelt tightly touching my chest. The bigger the clip the better it holds and does not get caught in the mechanism.

One of the great things about this site is that members often provide numerous suggestions, of which some do and some do not resonate with the need. Maybe you have already tried this without success.

Surgery 4/27/2015 Mastectomy: Left, Right Dx IDC, 1cm, Stage IA, Grade 1 Surgery
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Oct 13, 2018 04:38AM LindaKR wrote:

magiclight...could you post a picture of how you do that with the seatbelt? I find myself holding the seatbelt away from me if I have to drive more than about 10 minutes.

Modified Radical MX w/axillary dissection; 6xTCH, Hercpetin for a year, Rads, trying 3rd AI Aromasin. No Reconstruction. Lymphedema. Dx 3/19/2010, IDC, 4cm, Stage IIIA, Grade 2, 5/18 nodes, ER+/PR+, HER2+ Surgery 4/2/2010 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left Targeted Therapy 5/15/2010 Herceptin (trastuzumab) Chemotherapy 5/15/2010 Carboplatin (Paraplatin), Taxotere (docetaxel) Hormonal Therapy 9/15/2010 Arimidex (anastrozole), Aromasin (exemestane), Femara (letrozole) Radiation Therapy 9/25/2010 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy Arimidex (anastrozole)
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Oct 13, 2018 07:26AM - edited Oct 13, 2018 07:29AM by JO-5

I've purchased those gizmos they sell to keep seat belts loose.....They are either not loose enough or pop off..... I am not sure what you mean by a binder clip but will look. If it is what I think it is we have some , they are not huge but I'll give it a try.

This is it....right?

Thanks

Joanne

IDC 04 Stage 1 Grd 3 no nodes Lumpectomy rads plus boosts ER+PR+HER- AI 5 yr 2014 secondary angiosarcoma from rads lumpectomy recurrence 1 yr Mastectomy with lat flap 1/2 flap went necrotic skin graft to center of chest.
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Oct 14, 2018 01:20AM - edited Oct 20, 2018 06:31PM 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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Oct 22, 2018 05:14PM AliceKo wrote:

Wonder if anybody gets improved symptoms from removing the implant or doing a different kind of reconstruction, such as DIEP

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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Dec 30, 2018 12:06PM Bcbc wrote:

For those that follow this thread, I would suggest joining the very active Facebook group "surviving post mastectomy pain syndrome,"

We're all in this together.

Dx 3/30/2018, IDC, Left, 1cm, Stage IA, Grade 2, 0/5 nodes, ER+/PR+ Surgery 4/18/2018 Lumpectomy; Lymph node removal Hormonal Therapy 4/24/2018 Femara (letrozole) Surgery 6/1/2018 Mastectomy: Left, Right; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 11/27/2018 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Dec 30, 2018 05:24PM MinusTwo wrote:

Sorry - I don't do Facebook at all. That's one of the reasons I'm so grateful for the BCO discussions.

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 31, 2018 01:05AM Bcbc wrote:

Minus two, I do understand your aversion to Facebook, but the activity of that group is very supportive. I wish this group here was more active.

Dx 3/30/2018, IDC, Left, 1cm, Stage IA, Grade 2, 0/5 nodes, ER+/PR+ Surgery 4/18/2018 Lumpectomy; Lymph node removal Hormonal Therapy 4/24/2018 Femara (letrozole) Surgery 6/1/2018 Mastectomy: Left, Right; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 11/27/2018 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Dec 31, 2018 07:46AM Aussie-Cat wrote:

On Facebook, don't you have to use your own name? From what I've seen of it, pages keep getting longer and there aren't proper links to different sections, you have to stay on the same page and more keeps loading at the bottom slowly. Is the Facebook group any different?

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, 2018 08:51AM - edited Dec 31, 2018 08:54AM by Bcbc

it is a closed Facebook group. The only ones that can read posts are ones that have requested to join the group.

I actually prefer the set up on Facebook. You can comment on specific comments, so it's very easy to follow the comments you're interested in. And you can "like" comments so easily. So, it's very easy to be supportive without having to remember the person's name to identify in your comment.

Best of all, the group is active. Note that it had been more than two months since anyone has commented on this page until I mentioned Facebook.

AliceKo never did get any answers about removing her implants. I felt bad that she didn't get any answers. The same questions asked on Facebook would receive many answers.

(From what I've read in the Facebook group about removing implants to reduce pain, some have removed them, but in general, it didn't seem to be a good solution. )

Here's to a happy New Year for all that includes discoveries of relief for our pain!

Dx 3/30/2018, IDC, Left, 1cm, Stage IA, Grade 2, 0/5 nodes, ER+/PR+ Surgery 4/18/2018 Lumpectomy; Lymph node removal Hormonal Therapy 4/24/2018 Femara (letrozole) Surgery 6/1/2018 Mastectomy: Left, Right; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 11/27/2018 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Dec 31, 2018 08:54AM Aussie-Cat wrote:

Bcbc, thank you for your answer about Facebook. It's good that there are lots of answers there, although it's a group you have to join specifically.

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, 2018 08:56AM MinusTwo wrote:

Thank you for responding BcBc but I do not like the Facebook set-up & format. Maybe I can remember to 'bump' this topic to keep it more active.

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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Jan 16, 2019 08:37PM magiclight wrote:

Is anyone using CBD in any form to decrease PMSP?

Surgery 4/27/2015 Mastectomy: Left, Right Dx IDC, 1cm, Stage IA, Grade 1 Surgery
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Jan 16, 2019 08:55PM BarbaraT54 wrote:

yes. I have a medical marijuana card and use not CBD oil, that didn’t help my pain, but Cannabis oil with a hybrid combination of Sativa and Indica strains. My pain is a constant 8 to 10. The problem is the effects of the THC , so I only use it at night.

I had ovarian cancer twice- I am BRCA2 positive and had a prophylactic double mastectomy with FLAP reconstruction. My pain is in my entire torso. The FLAP was a huge error. My PS convinced me “best” thing to do.

I have massive scar tissue in my entire torso, plus flare ups of Lymphedema.

The cannabis oil does help sometimes. I’ve tried everything.,.

Bar

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Jan 16, 2019 10:55PM magiclight wrote:

Barbara, so sorry you are in such pain. I do not want to take anything with THC component, but glad you find some relief for your pain at night. I have not tried any of the CBD products because I do not think they will work, but wanted to explore if anyone found some relief. It is a long shot, but I'm open to options.

Gentle hugs to you and mostly hoping that one day I'll open this thread and find information on a cure for this pain.

Surgery 4/27/2015 Mastectomy: Left, Right Dx IDC, 1cm, Stage IA, Grade 1 Surgery
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Jan 17, 2019 05:43AM Rah2464 wrote:

Barbara I am so sorry about the pain you are experiencing. I assume you have also tried oncological massage? I have a massage therapist who specializes in lymphedema and breast reconstruction. She is also a surviver herself. And it helps tremendously although I will admit the massage itself is painful as she works the scar tissue loose. Of course, insurance doesn't pay but she is worth every penny to me.

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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Jan 17, 2019 06:48AM BarbaraT54 wrote:

Thank you for your kind words. I'm on my 9th practioner in addition to acupuncture, dry needling etc etc. etc

But, actually my newest massage therapist is using a “face" blaster tool that has loosened my abdomen a bit.

The Lymphedena is not an issue right now, it's the massive tightness and actual breast pain that is so unbearable. I thought maybe the cryotherapy I triedwould help, but I was told it's not a good thing if you've had cancer.

For 5 1/2 years I've been on this quest to find something for this often unbearable pain.

But, I am so grateful to be an almost 10 year cancer survivor I have learned to “suck it up" 🤗

Thanks again,

Bar





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Jan 17, 2019 02:25PM magiclight wrote:

I hear you Barbara...I am going on 4 years without any substantive relief. I take Gabapentin, but do not like the side effects. Myofascial massage did not work and unfortunately there are no other massage specialists in my area. Somewhere I read, perhaps here, that faking being sick is so much easier than faking being well. Sucking it up takes a lot of energy and I truly appreciate everyone here on these threads who are doing the latter. Knowing that another person understands is a tremendous help to me. Thanks.

Surgery 4/27/2015 Mastectomy: Left, Right Dx IDC, 1cm, Stage IA, Grade 1 Surgery
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Jan 17, 2019 02:43PM BarbaraT54 wrote:

hi- I do totally get it. The degree of pain can be so intense and I try not to dwell my family, but sometimes it is so hard to be faking it.

I took 1800 mg of Gabapentin- all it did was make me feel weird, without lessening the pain. I stopped it cold turkey.

This pain has truly been more challenging than the 34 rounds of chemo I had.

The breast pain at least has a purpose, but the abdominal pain is truly the fault of my plastic surgeon who totally pushed the FLAP with no warning about potential pain from my past or possible future ovarian cancer surgery. Unfortunately, the ovarian cancer recurred 8 months after the mastectomy so I had an additional surgery.

If medical marijuana is legal in your state, I recommend it. It does bring some relief.

Did you have reconstruction?

Best,

Barbara

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Jan 18, 2019 12:14AM magiclight wrote:

Barb, I did not have reconstruction. At this moment I'm weaning myself of Gaba, though only take about 1/2 of what you did. As my pain, thankfully, does not keep me awake I do not want to take marijuana during the day. So many issues to deal with and my surgeon stated he never had another patient with PMPS - so much for truthfulness and I never went back to him for any follow up after about the 3rd post op visit.

Belonging to the BC club sure sucks and I had such expectations of having the BLM and getting on with my life. Clearly, from your description of your situation, I have much less on my plate than you.

Surgery 4/27/2015 Mastectomy: Left, Right Dx IDC, 1cm, Stage IA, Grade 1 Surgery
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Jan 30, 2019 01:28PM mollyboo wrote:

There is an article on PMPS in an old Cure magazine that explained cause & treatment modalities. I'm pretty sure I have this. I have lancinating pain that goes through my chest wall to my scapula,& neck & shoulder pain. This is on the side of my BLM that I developed MRSA in my tissue expander, necessitating removal. The pain flare ups are becoming more frequent & affects my QOL when I have pain... hoping one of my docs will listen & help.

https://www.curetoday.com/publications/cure/2013/winter2013/post-mastectomy-pain-hits-a-nerve

Kathy
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Feb 2, 2019 11:04AM LiLi-RI wrote:

mollyboo: Thank you for the article! I just started PT to work on scar tissue under right breast which radiates to back nerve. I only lasted 5 minutes on the table! I am willing to give it a chance if I can tolerate the pain. I also experience spasms with white light pain both above and below my right breast. It all started 1 year after Stage 2. I will try the numbing cream before next session. Lisa




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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Feb 12, 2019 01:42PM - edited Feb 12, 2019 01:45PM by Bexter3

Oops, thought this would go with my original post on getting Radio Frequency Ablation/Rhizotomy. It didn’t but here’s the punchline... It didn’t work long term and stopped working completely. They needed to be done every 6 months and after the third one it stopped working! I had my last one in 2016 and I just said no more. So, going on 9 years of debilitating PMPS in June.

Dx 12/31/2009, IDC, 6cm+, Stage IIIC, Grade 3, 23/23 nodes, ER+/PR+, HER2+ Targeted Therapy 1/22/2010 Herceptin (trastuzumab) Chemotherapy 1/22/2010 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 6/6/2010 Lymph node removal: Right, Sentinel, Underarm/Axillary; Mastectomy: Right; Prophylactic mastectomy: Left Radiation Therapy 7/5/2010 Breast, Lymph nodes Hormonal Therapy 9/16/2010 Hormonal Therapy 7/15/2011 Arimidex (anastrozole)
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Feb 12, 2019 01:46PM Bexter3 wrote:

has anyone tried the Spinal Cord Stimulators? There is only one small study and it was initially effective but then gave no relief. The anecdotal info from my PMPS sister's is that it didn't work for them. Any thoughts

Dx 12/31/2009, IDC, 6cm+, Stage IIIC, Grade 3, 23/23 nodes, ER+/PR+, HER2+ Targeted Therapy 1/22/2010 Herceptin (trastuzumab) Chemotherapy 1/22/2010 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 6/6/2010 Lymph node removal: Right, Sentinel, Underarm/Axillary; Mastectomy: Right; Prophylactic mastectomy: Left Radiation Therapy 7/5/2010 Breast, Lymph nodes Hormonal Therapy 9/16/2010 Hormonal Therapy 7/15/2011 Arimidex (anastrozole)
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Feb 12, 2019 03:51PM magiclight wrote:

Bexter, so sorry you are living 9 years with PMPS and no relief in sight. Any thoughts / actual helpful interventions welcomed.

Hugs to you my PMPS sister.

Surgery 4/27/2015 Mastectomy: Left, Right Dx IDC, 1cm, Stage IA, Grade 1 Surgery
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Feb 12, 2019 05:33PM MinusTwo wrote:

Bexter - are you talking about a TENS unit? My SIL had one and swore by it. Anytime she went out it was strapped to her lower back. She turned it on with a remote control to control the pain. She had sever RA and spinal degeneration.

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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Apr 11, 2019 10:38PM LuvMyFam wrote:

I see this post has not had much going on lately. Well, I had a huge turnaround with my PMPS when I started taking Amatryptaline (25mg) nightly. It helps me get a good night’s sleep, which then helps me deal with pain, neuropathy, migraines, and daily living. I was so stressed from not sleeping well and being in pain 24/7 that I was miserable. Now, I find that the Amatryptaline helps by giving me a break from the pain. It resets my pain tolerance. Another HUGE help that my therapist suggested was using the pain scale... When my pain level goes up 2 points, I take a break and try different mechanisms (meditation, prayer, elevating my arm, nap, stretching, etc) until my pain level goes down two points. It is not always feasible, but it works most of the time. Even if I switch tasks to help lower my pain, it works

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 10:53AM Aussie-Cat wrote:

LuvMyFam, I'm so glad you had a huge turnaround in your pain level when you started taking Amitriptyline!

My PMPS is also less bad than it was and I've been able to reduce my Lyrica from 300mg per day to 200mg per day so far. Reducing the last amount made my body feel stressed so I will stay at this level until I feel more relaxed.

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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