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.
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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.
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.
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.
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.
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.
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
- Lymphatic Drainage
- Traeger Therapy
- Self Cupping
- Self Massage
- The BodyMind Ballwork Method
- CBD Oil/THC Oil
- Capsaicin Cream
- Diclofenac Cream
- Ice Packs
- 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.
I first shared this post on April 25, 2023.
Kirsten Evans says
Working with an ND practitioner to practice a modified EFT method (Emotional Freedom Technique) might help pain and the emotional trauma surrounding your healing. Would absolutely need modifying to meet your physical limitations but totally possible. There’s a brain reset method too that I use for stress, physical & emotional pain most naturopaths are familiar with.
Thanks so much Kirsten.
Elana, I’m not sure if fasciablasting if something you have heard or tried before. It something I recently got into and I just finished reading Ashley Black’s book “the cellulite myth: it’s not fat, it’s fascia”. I think cellulite is the hook to get many women into starting use of her tools and caring for their fascia but really the book is about so much more and tons of women are now using her fascia tools for pain relief. It does say cancer is a precaution but I would encourage you to email her and her team to see what they think and if Ashley Black has had other cases similar to yours in her decades of work and research on fascia to help guide you. Wishing you the best!
Allie, thanks for this unique idea and for your support.
Dear Elana, I too had a mastectomy in September 2020 and opted not to have reconstruction. After my mastectomy, I had limited mobility and pain under my arm. I had the physical therapist manually work on the scar tissue. She wasn’t supposed to do this, but I knew this is what I needed. Here I am 2.5 years after the mastectomy and recently had a mexican traditional masseuse work on my mastectomy scar, my sentinel lymph node scar, and my chemo port. I haven’t been able to find any massage therapist who will work on the scar tissue. I was blessed to find someone earlier this year. She is willing to work on others, but is located in Southern California. My only suggestion is to find someone who will work on the scar tissue and have patience to ensure the release of the muscles and scar tissue. She would have to work on the entire body. Castor oil is supposed to help scar tissue. Praying that you find someone.
Adrienne, I am so sorry to hear you have gone through this too. I have a fantastic PT who does scar work, and also a great bodywork person who works on my scars too. I cup and massage my scars several time sper week. It is my armpit that has a tacked down vice like feeling that is just intractable. I have been researching what happened to me and I think I may have figured it out thank goodness.
Kathleen Ayers says
I’m sorry to hear that you are going through so much pain and struggles. I’m a clinical psychologist, licensed in California, and have worked with people with chronic pain for several years. I’d be glad to offer you some suggestions about dealing with your pain. You can reach me at firstname.lastname@example.org, which is secure and HIPAA compliant. I’m going out of town for a conference Wednesday through Sunday and will be able to talk with you after that.
Kathleen Ayers, PsyD
Kathleen, oh my goodness, thank you so much, you are so very kind. I have gained some new insights regarding the etiology of my pain and it looks like a solution is on the horizon. <3
Hedy Kling says
I am so sorry for your continuous pain after the poor surgery. I read the list of what you have tried to alleviate the pain and i am think it might be helpful to try low light pulse laser. This can sedate the nerves and it can also help them regrow. It definitely might be worth a try. Multi Radiance Super Pulse laser
would certainly be worth a try. I think they are based in ohio.
Hedy, that is a great idea, thanks.
Angela G says
I’ve heard that castor oil packs are somewhat of a panacea. Edgar Casey was a famous medical intuitive. Here is a link for how to use/make castor oil packs: https://www.edgarcayce.org/the-readings/health-and-wellness/holistic-health-database/therapies-castor-oil-packs/
Angela, love castor oil packs, they are great. Thanks so much.
Kirsten Evans says
Jeri Yahoudy says
I just wanted to say that I have loved your recipes, natural living, research, blogs, and family stories over the years. Thank you for sharing your highs and lows with us folks online. You have inspired me (and I know so many people around the world!) to keep researching, fighting, and finding joy through it all. I wish you the best of luck for a FULL recovery and no pain. Sending you love.
Jeri, thanks for your kind words and support.
Helene LeWinter says
I did not see that you have tried Alpha Lipoic Acid supplements.
It is a supplement that does help with nerve pain. It is given to diabetics for neuropathy. If you try it, please make sure you are getting a high quality supplement…not the cheapest store brand. It is pricey. I think sometimes people do not get positive outcomes from supplements due to the poor quality and or lower dose than is needed. I wish you the best. I know this may not be helpful but I will say it anyway. Over 20 yrs ago I was very, very ill (I am now healthy) and in the hospital. As ill as I was and with an altered body image because of it, I kept focusing on Christopher Reeve (who at the time had fallen off his horse and became a quadriplegic) and said it could be worse. No one can know what it is like to be in someone elses shoes but it is helpful to focus on what you have, what you can do than on the situation that you are in. I know there will be something that will work. Don’t give up looking and trying. I wish you the best Elana.
Helene, thanks for that suggestion. I love ALA, been taking 1,200mg minimum daily for around 20 years.