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.
Sheryl says
Dear Elena,
I am so sorry this has happened. I haven’t been on your website for a while and didn’t realize you were dealing with such a difficult situation. I hope this information will help with your recovery. My husband had mild hyperbaric oxygen therapy twice a day for at least 40 days after a craniotomy surgery and again a few years later to help with his recovery. Please look into this because it helped heal his surgical sites, nerve pain, rapid healing, etc. We first did this a few years ago and it was not as well known. Now it’s more accessible and I actually see clinics offering this with other therapies. I know this therapy is somewhat controversial in traditional medicine, but Dr. Amen’s clinic recommended it to my husband and he had excellent outcomes. You can also buy a machine for your home since it is so hard to go twice per day for 4+ weeks and then intermittently as needed. I am sure other readers have other recommendations more specific to your surgery but I hope this helps in some way. You have helped so many people in your life and we are all so grateful for your time and energy sharing your health knowledge with us.
Elana says
Sheryl, thank you so much. love HBOT. Here’s more for other readers:
https://elanaspantry.com/the-complete-guide-to-hyperbaric-oxygen-therapy/
Elana
Joanna says
Elana, I am so, so sorry to read about the pain you’re in. My own double-mastectomy nightmare was different from yours, but a nightmare nonetheless. Unfortunately, I don’t have any advice to offer about your pain–I think all my nerves were cut during my surgeries because, aside from occasional burning sensations in my upper back, I have no feeling in my upper chest. I do want to let you know what a wise decision not getting breast implants was on your part. Hundreds of thousands of women are suffering horrible illnesses directly related to breast implants called Breast Implant Illness (BII), and two or three types of cancers are now associated with those implants. I am so glad that you will never suffer any of this. Feeling as though you’ve been “roofied” by a surgeon is well known to us as many of us were put under and woke up to find that the surgeon had completely disregarded our instructions and decisions (myself included). All this is done with the attitude that the surgeon knows better than we cancer patients do about what will make us happy down the line. I wish you refuah shlemah, and that one day, the pain and that feeling of being betrayed by that surgeon will disappear.
Elana says
Joanna, I’m so, so sorry this happened to you. I hope you’ll share more here, for myself, and others. Thank you so much.
Barbara says
Elena, my heart goes out to you. I have also had a double mastectomy almost 20 years ago w/o reconstruction with lymph node removal. Just the emotional and physical navigation of that can be tremendously difficult , let alone when complications ensue. Since that time I have learned of an organization called “Immerman Angels” – cancer support. I became an “angel” to quite a few newly diagnosed women- I was there to offer support, share my story , answer questions etc. That organization does a great job of matching your particular circumstances to someone looking for support. There’s no cost. Maybe you might find someone else who has experienced the same ? Best of luck to you. You are a warrior!
Elana says
Barbara, thank you for your comment and your kind words.
Melissa Woodle says
Hello!
I’ve been following you for years. You are an inspiration. I’m sorry you are facing this as well. I would try seeing an acupuncturist. I’m licensed in CO and FL so I’m aware of the scope of practice in both states. Dry needling is completely different than acupuncture. They only have 60 hours of education. I know CO doesn’t allow injection therapy for acupuncturists. But Traumeel injections from Germany are amazing they can add b12 which is also great for scaring. Dr Lucas is in Denver. She’s an accomplished acupuncturist. I’m sure that you could find someone wonderful in Boulder. It is very common that we treat scars and chronic pain and acupuncture and it’s a completely different approach. You could also look into frequency specific microcurrent. Dr. McMakin has come up with some fantastic things. She has physicians that are trained all across the country to use her specific type of microcurrent frequency. Let me know if I can help you in anyway. Good luck!
Elana says
Thank you so much Melissa.
Evelyn Boykan says
I do see mindbody medicine as important in all body issues including pain. I have dear friends who live with chronic nerve pain. I do believe in the rewiring of neural pathways. I have been impressed with cimbs therapy which stands for complex integrative multiple brain system. I believe Boulder is a great area for alternative medicine. You have been through a huge trauma and someone who has expertise in trauma therapy is important. Thank you for setting the example of reaching out for support. So many women give up. I feel you will be successful and then you will be teaching others just as you have done with food.
Warmly
Evie
Elana says
Evie, what a sweet comment. Thank you for your support.
Flora Chavez says
Hi Elana,
So sorry that you are suffering with so much pain. Here’s an article about promising clinical trial.
The trial, led by Dr. J. David Prologo at Emory University, used a tried-and-true technique for treating nerve pain in a new patient population: women with PMPS. Prolongo and colleagues targeted a nerve in the armpit with cryoablation, a minimally invasive procedure that selectively freezes affected nerves.
https://www.insider.com/woman-got-her-breasts-removed-had-burning-pain-years-after-2022-10
My prayers are with you.
Elana says
Flora, thanks for sending this compelling surgery and for your prayers.
Melinda says
I don’t have suggestions for your pain but my heart goes out to you and your journey through this. Sending prayers to you for grace, solutions and peace. I believe in your ability to return to a pain free life. I’ve gone through tremendous physical pain in my life which has taught me so much. I pray you get through this soon. ♥️
Elana says
Melinda, so grateful for your prayers, thank you.
Ali Zeljo says
Dear Elana, Have you heard about using imagery to compete with the pain circuits in your brain? I read about it a few days ago and I bet you would be a great candidate for this since you are so brilliant!
http://www.neuroplastix.com/
Elana says
Thank you Ali, I will look into that, and appreciate your kind words.
Lynda says
Hi, Elana. I am a long time enthusiastic follower but this is the first time commenting. I just read your recent post on chronic pain. Having been through a long health journey with a family member, I was very touched by your experience. I was always open and eager to hear others’ suggestions for help, gleaning what might work for us, but always appreciative, as I know you are. I just wanted to pass this along, and perhaps you’ve already researched this–red light therapy for pain management. I have no first hand experience but it sounds intriguing. Dr. David Jockers has a post from May 5 that mentions a device that might prove helpful for you. Again, no first hand knowledge but always hopeful! Praying for you, dear one.
Elana says
Lynda, thanks for your incredibly sweet comment and the red light recommendation.
Sheila says
I am so sorry that you are having this pain, Elana. My suggestion would be to contact Deanna Hansen at Block Therapy, a fascia-work program out of Winnipeg. There are tremendous healing stories there, and I have been amazed at how fascia seems to affect everything! In my experience, Deanna is very honest about whether her program will help or not. She is definitely “Canada nice” and is a true healer, not someone just trying to sell her program. She hosts a live Q and A Zoom call monthly. That might be a great place to present your problem. Or email her. Good luck. ❤️
Elana says
Sheila, thanks for the great tip.