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.
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.
Dawn says
Elana, my heart breaks for you! When I had my breast implants removed I ended up with severe burning nerve pain covering both breasts. My surgeon told me to scratch the entire area daily with my fingernails to stimulate nerve regrowth. It was extremely painful to do, but did actually work to get rid of the pain after a few months. You may have already tried this to no avail, but I thought I’d throw it out there anyway. I have been following you for many years and appreciate all you do. Please know that I’m praying for you to find relief very soon.
Elana says
Dawn, thank you for your kind words and for the great idea.
Melanie says
Hello. I have suffered from the pain too. I am 4 years post surgery for Inflammatory Breast Cancer. I only had my right breast removed. It took two years to find a doctor that could understand the pain and offered some relief through trying Cymbalta. It has helped me. Most doctors told me that they had never heard of anyone experiencing this type of pain. I still experience a few days of pain here and there, but I no longer have the continuous pain. I can now wear clothes without experiencing the intense pain and nausea when the cloth lightly touches the area. The arm and armpit pain that you describe has decreased for me with time and it no longer feels like raw meat or that your skin has been scraped off. However, my chest wall, arm and armpit still have an indescribable sensation when touched. The sensation is a little painful and makes me nauseous. I have electric shock and some pain from when someone touches my arm or shoulder or when hugged tightly; and when I apply lotion or use a towel on my arm, shoulder or chest wall. I have to be gentle when touching my chest wall area but at least it can be touched, though I do experience light pain and some nausea when it is touched. BTW – I tried PT, acupuncture, stretching, self massage, Shamanic healing, and CBD oil and I did not find relief.
Elana says
Melanie, isn’t it unbelievable to go from doctor to doctor and have them look at us blankly like we’re crazy. You said: “I can now wear clothes without experiencing the intense pain and nausea when the cloth lightly touches the area.” That is my dream. The medical system has hurt me and failed me and so many other women like you. I’m sorry for all we have gone through.
Natalie Jansen says
Hi Elana- I’m sorry to hear about your pain and disappointing surgery results. When I read what you are experiencing, pleural (concavity) and nerve restrictions (burning sensation, trigger point work helped) come to mind. Visceral, neural, and vascular manipulation could help. There are many skilled therapists in Boulder and here’s the website where you can search for a practitioner: https://www.iahp.com
I specialize in this work and am happy to answer any questions. I also have excellent acupuncture referrals if you need one. Wishing you the best:)
Elana says
Natalie, thanks so much for your comment and helpful suggestions.
Victoria says
Hi Elana,
Don’t know if any of the 5 PT’s you saw are trained in the methods of Upledger and Barral? If not, no doubt there are at least a few with advanced training/skills in your area. Check this website, plugging in your zip code: https://www.iahp.com/pages/search/index.php .
I know you’ll keep looking under every stone for answers….and relief.
Thank you for everything you do for others; we’re all sending love and support!
Elana says
Thank you Victoria, for your suggestion, as well as your love and support. It means so much to me.
Jan schroeder says
Hi Anne
I am a Rolfer and I have worked with pain and also have worked with breast cancer clients. I also have suffered from chronic pain. All the surgery moved around your tissues and fascia causing adhesions and painful posture. Rolfing is affective in reducing adhesions and realigning tissues for better posture. I have had great success reducing pain and improving mobility. But also the deep work touches the nervous system and for me and many clients it helped reset my pain tolerance.
I have other ideas too that are based on alternative therapies that I have worked with myself and clients. Feel free to contact me for further discussion
Jan
Elana says
Jan, thank you so much. I will be in touch.
Michelle says
Hi Elana,
I was diagnosed with triple positive breast cancer in September, 2021. I relate so much to everything you said about the overwhelm, options, and the allopathic cancer machine. Within 2 weeks of my diagnosis, I was receiving my first treatment of two chemotherapies and two immunotherapies. What I forgot to mention to the oncologist was that I have Multiple Chemical Sensitivity. Long story short…I chose to stop after the 3rd round. I was pretty sure I wouldn’t live through the 4th. I also had a lumpectomy and several lymph nodes removed after the third and last round of treatments. I was a mess, really struggling, and chose not to do any further follow up like radiation, etc.
What I also did do throughout the journey were alternative modalities. The two that helped the most were the Rife machine and hands on energy healing. I still rely on both when I am not feeling well. Overall, I’m recovering well, but I still have pain in my breast, fear that it will come back, and fatigue. It’s definitely life changing. I do believe that our bodies “know” how to heal. Sometimes loving “helpers” can lift and carry us through when we’re emotionally, spiritually, or physically too fatigued. If you would like some help with sourcing those two things in your area, I would be happy to. Thank you for all that you freely give to so many.
Elana says
Michelle, thanks for sharing your story here. I could not have survived the last year without my loving helpers. Let’s keep in touch.
Sharon B says
Elana,
I have followed you for years though not consistently. I am so heart broken that you have gone through and am living this reality now. I know of no other modalities other than what you have tried. I have a couple of friends and will ask them if they have ever helped any women (or men) with PMPS. Please know I am sending out heart ribbons from my heart to yours.
Elana says
Sharon, heart ribbons right back to you. Thank you.
Marcia says
I am using cryotherapy on my back – spinal stenosis. Can’t believe the relief of pain. My chiro also recommended the book – Toxic Superfoods, by Sally K Norton. I recommend you read. It took me a bit to get my head around it – it does work.
Elana says
Marcia, thanks for these great suggestions.
Damselfly says
My functional medicine doctor recommended this book to me. I am still reading it but doing a lot of research on “allowed” foods and such. It almost seems too good to be true to me because it doesn’t appear that difficult. Although I must admit I do not know how I am going to give up my morning cup of black tea. Have you been working the book and seeing results? I am hopeful but apprehensive.
Anne says
Dear Elana
I’m sorry for all that you have to go though, I wonder if ketamine therapy for pain relief could help?
I hope you find soon a solution and wish you soon recovering
Hugs
Elana says
Anne, that is a fantastic idea, thank you.
Lori Zimmerman says
Elena, I’m so sorry you are experiencing this. I’ve had success using a sugar alcohol called mannitol which is diluted and injected directly into the scar. The mechanism of action is to supply the nerves entrapped in the scar with dilute sugar which can calm the pain. Feel free to contact me Drzmonarchmedical@gmail.com
Elana says
Dr. Lori, what a genius idea, thank you. Are you practicing this therapy on your patients?