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.
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.
Cathy S says
Elana,
I have been following you since 2011 when I found out I could not consume gluten, sugar, corn, dairy, peanuts etc…. You have helped so much with your recipes and blogs.
I have a suggestion. Have you ever tried EFT. It is tapping on meridian points to reset your body’s nervous system.
I follow Nick Ortner and The Tapping Solution App.
I am praying for you!
Elana says
Cathy, I love EFT< I did not think of it for helping with a stabbing pain in a muscle but will look into it.
Theresa says
I’m so sorry to hear about your pain . I had a double mastectomy my self 3 1/2 years ago . I have had 4 more surgery’s since lymph nodes under right arm removed and implants taken out twice a put back it . Finally I have a good surgeon who just fixed left breast with implant .
There is pain with my arm and nerve pain off and on .
Breast cancer for us have had to deal with it is stressful and depressing .
You’re not alone . My heart goes out you . Theresa
Elana says
Theresa, it’s so depressing, the doctors, the system, the pain. I’m sorry we’re going through this.
Sherene says
I just listened to this podcast: Befriending Pain – about Meditation/Mindfulness – and how a research about meditation actually produced results in helping with chronic pain.
Hope you are provided with ideas/suggestions/insights that actually produce results for you.
https://resources.soundstrue.com/podcast/jon-kabat-zinn-befriending-pain/?utm_source=Z-Customer%20Service&utm_medium=email&utm_campaign=N230507-Zinn%20%2801GZEXZ3GXYYQGA0H3HZGKJY90%29&triplesource=klaviyo&utm_klaviyo_id=01GQ44H9SHQ8K4YXNQR6W6RCGG&_kx=tJQfJOGHo623FwmvnkSYsVItb0aQNXZroFNqDtd12jY%3D.JMDgaq
Thank you for all you do and all the information you share!
Elana says
Thanks Sherene, I will look into this.
Joey says
I am so sorry you are experiencing the painful side affects from your double mastectomy. Not sure if this would help but check out Unifydhealing.com.
Are you familiar with HEALY? I have been using HEALY for chronic pain in my neck and head. Has helped me. Assuming you have prayed on it as well.
Home | UNIFYD Healing
http://www.unifydhealing.com
Elana says
Thanks Joey.
Caroline Burnett says
Dear Elana, I am so sorry you have been experiencing this pain in your life. I would like to recommend Nancy Shaw who trained with Dr. Janet Travell, the pioneer of Myofascial Trigger Point Therapy. Ms. Shaw is now the best authority on MTPs and is the only one I would recommend you see. Ms. Shaw follows the 7-step protocol designed by Dr. Travell which includes: comprehensive patient history; pain mapping; range of motion evaluation; postural analysis; identification of perpetuating factors; manual techniques; and a personalized stretch program, which is typically not followed by other therapists.
I would sincerely encourage to reach out to Ms. Shaw.
I forwarded this page to Ms. Shaw and spoke with her. She is very interested in speaking with you via zoom if you are willing, and would like to help if at all possible. You can contact her at 703-861-4852. Bless you my “unknown” friend.
Elana says
Caroline, thanks a million. I will look into this.
Elana says
Thanks Margo, sorry to hear of all you’re going through, appreciate your thoughts.
Sara Solomon says
Hi Elana,
I had a double mastectomy 12 years ago (I was 34) and have found that the single most helpful thing for me has been Pilates. I work with a physical therapist who specializes in breast cancer patients, and she has a separate room for this work. It is not typical Pilates (she has Polestar training). I found that the first few years after my surgery were tough because I had constant cording (axillary web syndrome) that impacted both my chest and armpits and was very painful. I think it is worth continuing to look for the right PT. I hope you feel better soon. PS – My grandparents had Brochstein’s Deli in Patchogue NY, and my whole family follows and loves your work!
Elana says
Sara, OMG, you are Murray Brochstein’s granddaughter?! I think your Gma’s name was Edith, they had the best pickles, I can still recall the smell of walking into the deli, a rich aroma of candy, cured meats, and salt that I will never forget.
Anita Tupper says
Hello, Elana. I have not reached out to you but have read your blogs for years. I am a Bowen Therapist and I did not see this modality shared by anyone else (sorry if I missed it). From the description of your pain and experiences, I believe it could help and in my opinion is well worth a try. Bowen Therapy is not well known in the US, particularly in the Midwest. I have a great deal more I can share with you if you would like to reach out to me directly. You have my email. In the meantime, my intentional thoughts and prayers go out to you. Thank you for all you do for others, I pray it all comes back to you now one-hundredfold. Anita
Elana says
Anita, I have had Bowen therapy and love it, did not think of it for the stabbing pain in my muscle but will look into it, thanks.
Stephanie says
Hi Elana,
I am so sorry to hear about your current health challenge. It sucks when we make a choice in hopes of being healthier and end up feeling worse.
I have read some of the comments and you are getting so really good suggestions. You have wonderful readers!
My suggestion is EStim therapy. I also deal with some chronic pain from my MS. I have found some help with a company called Neufit. The owner has a blog and also a book called The Neufit Method. I can’t intelligently explain the technology. But this is not a TENS machine it’s much stronger. There are some PT office’s that have and use this machine or you can contact the corporate headquarters in Texas. The method helps with recovery, muscle development, neuropathy, pain and more. It has helped me recover some lost range of motion also. A nice benefit is it can be used to help reset the nervous system so that a rest and restore state can be achieved.
I hope you find a solution that helps give you some relief.
Elana says
Stephanie, it sucks when we make a choice in hopes of being healthier and it makes us end up feeling worse –those are wise words you share, thank you.I will look into the Estim therapy.
margaret Conyers says
I am so sorry for your barbaric surgical results. Nothing worse than continual pan with no let up. Have you heard of Pain Free for Life. It involves non invasive use of a battery operated device that acts to reduce pain and inflammation. DrJohn and LorryHache and their son Robert. They sell these devices at The Sana Shop.com and please do yourself a favour by checking out their information…I pray you get relief and rid of this inflammation. I use mine for arthritic pain but they have been used for returning bad frost bitten flesh to normal All the best my friend and thank you for your help to “us” new email address below.
Elana says
Margaret, thank you for choosing those words. The results are barbaric, and my chest is painfully carved out. I will check out this interesting option, appreciate you so much.