Much time has passed since February 2022 when I had my breasts removed in a double mastectomy.
Yet, I still have so much mastectomy pain that I am wearing an ice pack on my chest as I sit at the computer typing out these words.
Post Mastectomy Pain Syndrome
I’ve bounced back from a number of different health issues and made lemonade out of lemons more than most.
So it’s hard to stare at the screen and take in this scenario that I am not only writing about, but that I am living in moment to moment.
Chronic Chest Wall Pain
It’s harder still, to acknowledge to myself, that this is now my life. A life with chronic chest wall pain.
Diagnosed with Breast Cancer
When I was diagnosed with breast cancer (invasive lobular carcinoma), I was full of options, full of hope.
Free exclusive eBook, plus recipes and health tips, delivered to your inbox.
Today, that is no longer the case as I continue to suffer from post mastectomy pain syndrome, or PMPS.
Flat Chest Mastectomy Without Implants
I had both of my breasts amputated and did not get implants because the surgery for a flat chest is supposed to be far more simple and the recovery time much shorter, than traditional reconstruction with implants.
If you’re looking for more information on aesthetic flat closure, you must visit leading women’s health expert, Kim Bowles’ website Not Putting On A Shirt.
Flat Chest Mastectomy
I had high hopes for my flat chest mastectomy which according to the paper Not Just a Linear Closure: Aesthetic Flat Closure After Mastectomy1 and the National Cancer Institute2 consists of the following:
- Rebuilding the Chest Wall
- Smooth Contour
- Symmetry – “ensure the same size flap thickness bilaterally”
Poor Surgical Outcome
My surgery did not result in any of the above.
I was shocked after surgery when I took off the bandages and saw that my expectations of the surgery were not in line with the results we discussed.
But that’s not what I’m writing about today. Today I’m writing about the pain that came with my poor surgical outcome. The outcome that missed all of the NCI’s above stated goals.
Mastectomy Concavity
The main issue seems to be that the once healthy side of my chest is now concave, painfully carved out, with an indent in it.
It looks like I’ve been left with skin and bones on the right side, and it feels like it too.
MRI and Second Opinion
Both imaging and a second opinion have shown that the mastectomy surgery on the right side was far more aggressive and the naked eye can easily see this as well.
During an examination, the kind surgeon who provided me with a second opinion told me that rather than being built up, part of my chest wall was actually taken, in the overly aggressive mastectomy.
Armpit Pain
I mention this because I am concerned that there is a connection between the concavity and the pain. If you know anything about this please leave a comment.
What is Post Mastectomy Pain Syndrome?
Let’s back up a minute to discuss post mastectomy pain syndrome, or PMPS. According to the American Cancer Society PMPS is thought to be:
“Linked to damage done to the nerves in the armpit and chest during surgery. [Those] who have had axillary lymph node dissection and not just a sentinel lymph node biopsy, or who were treated with radiation after surgery are more likely to have problems with PMPS.”
The above does not apply to me. I did not have any lymph node dissection whatsoever on the right side, nor did I have any radiation at all.
In fact, I did not have cancer on the side that is in tremendous pain.
Flat Chest Pain
The concave side of my chest and armpit have a burning sensation.
Mastectomy Scars
My mastectomy scars are also painful. They have been diagnosed as hypertrophic scars in some places and keloid scars in others.
How do the scars feel? Like I have hot wires buried inside my chest.
Chronic Pain
Living in pain is exhausting, as I’ve learned from post mastectomy pain syndrome.
Scar Tissue Pain Years After Mastectomy?
Did you have a mastectomy? If so, let me know if you still have scar tissue pain years after your mastectomy, or if you’ve found a solution for it.
Intractable Pain
My goal is to be able to wear clothes without pain and have my arm in contact with my body without the sensation of pain. I also pray that at some point I can hug and be hugged painlessly.
Prior to one treatment below that seems to be giving me some relief, the right side of my chest, up into my armpit, felt like it was made of raw hamburger meat with sandpaper rubbing against it.
Mastectomy Recovery and Pain Treatments
I’ve looked into every type of therapy I can find. Here are the mastectomy pain treatments I’ve tried:
- Physical Therapy (5 PTs)
- Dry Needling
- Massage
- Lymphatic Drainage
- Traeger Therapy
- Feldenkrais
- Self Cupping
- Self Massage
- The BodyMind Ballwork Method
- CBD Oil/THC Oil
- Capsaicin Cream
- Diclofenac Cream
- Ice Packs
- Stretching
- Weight Lifting
- Compression Bra 24/7
- Trigger Point Injections
I have been left with a pain syndrome for which treatment has not been obvious.
Trigger Point Therapy
One promising type of therapy I received a couple of weeks ago is trigger point injections. I had two injections into my rib area and felt some initial relief from this. Thankfully it has continued to help. But I’m still living with pain.
Share Your Ideas
If you have an idea or solution to suggest, please leave a comment.
I Miss My Pain Free Life
The side of my chest that hurts is the side that had no cancer. I chose to have that breast removed in a prophylactic mastectomy to prevent myself from future recurring cancers.
This makes me very much regret having the healthy breast removed. Not because I miss having a breast there, but because I miss my old pain free life.
Mastectomy Concavity with Pain
If you’ve had a flat chest mastectomy and suffered from concavity with pain, please leave a comment and let me know if you’ve found anything that helps.
Radical Mastectomy Pain
I’m also looking to connect with women who have had radical mastectomies since this too can cause concavity and pain.
I wonder if there are special treatments for women with pain from radical mastectomies that could help me given that part of my chest wall was removed and that the word “muscle” showed up on my pathology report.
Mastectomy Pain Years Later
Please leave a comment and be in touch with your solutions.
UJ says
thanks to share
Elana says
You’re welcome.
Lily Bridgers says
My friend is on the hunt for a unique post-mastectomy product. She’s looking for a specialized and comfortable bra to help her feel more confident and at ease after her surgery. It breaks my heart that mastectomy scars are uncomfortable as well since they are sometimes classified as keloid scars and other times as hypertrophic scars.
Elana says
Lily, sorry to hear about your friend. My scars are very painful and have been diagnosed as both hypertropic and keloid. I would look at the brand Lulalu, it’s soft and comfy and made for post Mx.
Brigid van der Moezel says
Dearest Elena,
I’m so sorry for what you’ve endured and I pray that some better solutions will come to light.
I didn’t complete reading all the comments and links so I may have missed if anyone suggested DMSO for pain relief. Look further than Google for info on this amazing sulphur compound.
God bless you and help you find solutions.
Brigid
Elana says
Brigid, I have not heard of this, thank you for the rec!
Kim says
26 yrs post mastectomy (age 27 yrs at diagnosis) Stage IIb invasive ductal.
dbl mastectomy – right side was prophylactic. left TRAM reconstruction & right latissimus dorsi flap recon.
4 rounds AC chemo – NO radiation.
2 full term pregnancies AFTER surgeries\treatments.
1997 diagnosis/surgeries/treatments
IMMEDIATE & long term chronic pain. Pain became so bad I could no longer work. Tried everything available at that time (which was not much) & eventually just went on long term pain meds. It’s made daily existence unbearable & am made to feel guilty for it – that I’m lazy or something or should be more grateful to be alive….
Docs just assumed nerve damage/nothing they could do. Give you opiates & then hold your life hostage with them.
No one ever considered the mechanical issue (both harvested muscles are on my right side & I am right handed) & the weakness that ensues the entire right side of your body….Beyond frustrating. Now there is not a place on my body thar ISN’T in pain 24 X 7. I get excruciating charlie horses in my neck, shoulder, chest muscles, & abdominal muscle (the one remainubg & the one now on my chest!) When the occur in public, I have to stop till they pass because it looks like I am having a heart attack since they are so painful….
I wish I’d never done the reconstruction (hard to do as a 27 yr old newlywed!); however, sounds like you did not get off scott free either…..
Elana says
Kim, the surgeons interests are in no way aligned with ours. The options they advance are the most invasive and complex, because those are the most profitable procedures.
The surgeons tell us nothing of the consequences we should expect post op, other than it will be a “six week recovery.” I am 86 week into my “6 week recovery.”
Your outcome is horrifying and my heart goes out to you.
Please stay in touch,
Elana
Mara Schiffren says
I would try 2 more things here, parasympathetic breath work, which is a fancy way to get your body into rest and restore. It’s very easy. Simply do short inhales, like 3 or 4 count and longer exhales, like 5 or more count. Place your tongue on the roof of your mouth, because that is another acupressure point that relaxes your body. Do these together. Any time you feel the pain coming on, do the breath work so the pain doesn’t put you into a chronic stress fight or flight and keep your nervous system stuck there.
I also suggest working with a cranio-sacral therapist, who will be able to release some of the pain in your body so your body is not just storing it up and having it circulate.
That will give your body more respite.
Elana says
Mara, thanks for your comment. Great suggestions –I have used both of those strategies extensively and gotten a bit of benefit from each.
Mara Schiffren says
I wrote this for a friend last night suffering from CRPS. Different etiology, same result of chronic pain. Some of these ideas may be of benefit to you:
Have you yet tried LDN, low dose naltrexone?
https://www.ldnscience.org/resources/interviews/interview-amol-soin-crps
https://med.stanford.edu/pain/research/current-studies/crps.html
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3661907/
I consider LDN to be an EXTRAORDINARY therapy for a large range of chronic ills. It stimulates the creation of the body’s ability to produce endogenous endorphins. Normally this ability is inhibited in people with chronic conditions.
Here is what Jack Kruse — medical genius — suggests about CRPS:
https://www.linkedin.com/posts/drjackkruse_treating-inflammation-nerve-injuries-w-activity-6979505174499274752-V2hP/?originalSubdomain=by
https://open.spotify.com/episode/3VobylkfRocpbgKxt0YFkN
I hope you have gotten a lot more clarity in the meantime and have been able to mitigate some of this pain.
Elana says
Mara, thanks for your comment, i went on LDN about 15 years ago –it is a fantastic drug.
Jen Gash says
Is this related to your autoimmune status?..does ME cause surgical pain issues due to nerve etc status? regional pain syndrome…I think its called possible??
Jayme Race says
June 25, 2023
Hello Elana,
These are some additional references on pain management. Best wishes. Regards, Jayme
________________________________________
Pain Management for Treatment of Breast Cancer
https://www.komen.org/breast-cancer/treatment/side-effects/managing-pain/
5 Surprising Natural Painkillers: Boswellia, Turmeric, and More
https://www.healthline.com/health/pain-relief/surprising-natural-pain-killers
Chronic Pain After Mastectomy and Chest Surgery | Michigan Medicine
https://www.uofmhealth.org/conditions-treatments/surgery/chronic-pain-after-mastectomy-and-chest-surgery
Post-mastectomy Pain Syndrome
https://www.cancer.org/cancer/managing-cancer/side-effects/pain/post-mastectomy-pain-syndrome.html
________________________________________
Elana says
Thanks o much Jayne.
Jayme Race says
June 25, 2023
Hello Elana,
Attached are some references on Capsaicin (Topical Skin Cream) to help with reduce pain as well as other medical references. Best wishes! Regards, Jayme
Capsaicin (Topical Route) – mayoclinic.org
https://www.mayoclinic.org/drugs-supplements/capsaicin-topical-route/proper-use/drg-20062561
________________________________________
Help for Pain After a Mastectomy
https://www.treatingpain.com/news-updates/2019/august/help-for-pain-after-a-mastectomy/
Treatment for PMPS
Capsaicin is a cream made from chilly peppers. It goes over a skin area that burns or feels overly sensitive. It works by desensitizing you to pain (you become used to it).
________________________________________
Capsaicin in the Treatment of Refractory Neuropathic Pain after Mastectomy Surgery: A Case Report
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7506378/#:~:text=Taken%20together%2C%20this%20case%20report%20indicates%20that%20local,neuropathic%20pain%20in%20the%20context%20of%20cancer%20therapy.
Conclusion
Taken together, this case report indicates that local capsaicin as well as an effective multidisciplinary cooperation between gynecologists, anesthetists, and physiotherapists can facilitate successful treatment and rehabilitation of patients suffering from refractory neuropathic pain in the context of cancer therapy.
________________________________________
Elana says
Thanks Jayne, I tried capsaicin and unfortunately it did not work. I really appreciate your support and all of these references.
Kathy says
You might want to look into systemic enzymes to deal with the scar tissue. Drwongsessentials.com
Elana says
Thanks Kathy.