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.
Carol says
Elana, I have not had a mastectomy and like others am so sad about the pain you are living with. I’m wondering if near-infrared treatments might bring relief. My sister-in-law gets dependable relief from her post-surgical knee pain with a simple, inexpensive near-infrared device.
You are wise to reach out to this grace-filled, caring community. Peace and healing to you.
Elana says
Carol, thank you, that is a great idea.
L Hanks, FNP says
Look at LDN for chronic pain. Low dose naltrexone.
Elana says
L. Hanks, thanks, I love LDN, have used it for around 20 years.
Theresa says
so sorry to hear Elana. Awful. It sounds like it’s nerve and that the nerve block injections will help. Perhaps it might be strain of the muscle and tendon. Perhaps Botox injections to relax the muscles might help also. I am a doctor of physical therapy with over 20 years experience. Peace be your journey. xo
Elana says
Theresa, thanks so much for sharing your suggestion.
Danielle says
Elana, your openness to share your horrific experiences has touched me tremendously. Typing any words of comfort feel like platitudes. I am simply so very sorry for your continued emotional and physical pain. You have a long-time fan rooting for you in Pennsylvania!
Elana says
Danielle, thanks for your kind and thoughtful words. It has been a horrific experience, through and through. Sending hugs to you in PA.
Charlotte says
Elana, I wish I did have some recommendations for you. I don’t as I’ve not had this experience, but nevertheless I felt moved to write because I feel so badly for what you’ve had to endure since your surgery. Thank you for sharing your experience. It might be very helpful to others. I wish you the very best.
Elana says
Charlotte, thanks for your comment, I hope no one else ever has to go through this unnecessary trauma of harm to the chest on the side of a prophylactic mastectomy.
Rebecca says
Dear Elana, I am so deeply sorry to read of your journey. I do not have experience myself, but I to belong to Gerson Therapy and if that hasn’t already been suggested, it must be worth exploring Charlotte Gersons Book and the Gerson Clinic. Also, Doris Lohs research into high dose Melatonin? Everything is worth exploring for you. I will keep you close in my thoughts and wishes for a day and future without pain. Still make your amazing recipe for Orange Cake! and the Fruit Version too. With Love. Rebecca.
Elana says
Rebecca, thank you for these helpful suggestions, sending hugs.
Karen says
I have not had breast cancer, and so not surgery or related treatments, but I did have an injury four and a half years ago, and the result was severe neuropathic pain that, just as you have described, felt like hot wires in my body. I fell down some stairs and tore ligaments in my lower back. I felt like I had a hot poker up against my leg. Anyway, I identify with your description of your pain. About a month into the worst of it, I found an excellent Chinese medicine practitioner with an MD and PhD and who used to be an oncology surgeon in China and now practices acupuncture and a form of Chinese massage called Tui Na. After the first three sessions over the course of a week, my pain cut in half. I continued to improve and while I am not (and likely never will be) 100%, I have days and weeks where I feel I’m at about 95% without noticeable pain. The “cycle” of pain is pretty much gone. I still have work to do to regain the level of muscle strength that I had before the accident, but it now seems possible. I have to be mindful of my “tipping point”, i.e., to not go past my own edge when doing new activities. If I do, my muscles get stiff, which cuts circulation, which increases pain, creating a setback. Progress was slow for a very long time, but any improvement was a positive sign. I hope and pray you will experience the same.
Elana says
Karen, thanks for sharing your inspiring story of recovery here.
Marie-Louise says
Dear Elana – I wanted to take a moment and express how sorry I am that you are dealing with and managing pain. Chronic pain feels like a veil shading the world and our experiences. Because I am dealing with chronic pain (Lyme, fibromyalgia and autoimmune), I empathize and wish you the best in finding a solution. I look at the comments and lists of things you have tried, and I cannot offer anything new, but I want to offer wishes and prayers for comfort and solutions. In my own quest, if I find something new, I will write again, but I so appreciate your newsletters/ blogs and I learn from you. You are an inspiration. With love and care, ML
Elana says
ML, thank you for sending wishes and prayers for comfort and solutions. Sending you hugs.
Laura says
Elana, have you tried Capsaicin cream?
Elana says
Laura, I have. Will add to the list above, thanks.
Dianna says
Elana, I’m sorry you are going through so much. I would love to treat you with constitutional homeopathy in my Golden office. I have had success with pain that doctors said would not go away for clients. I hope you find a way to the other side of this difficult situation. Blessings, Dianna
Elana says
Dianna, you are such a gem, thank you more than words can say. I just had an update on my situation which I will be sharing soon.