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.
Nancy Steetle says
Sending love ..
Elana says
Right back to you Nancy.
Elena Upton, D.Hom.,Ph.D. says
Dear Elana, so sorry to hear about your ongoing health issue. As a Homeopathic Practitioner for over 30 years, I have heard countless stories of surgeries gone wrong. I noticed in your list of treatments Homeopathy was not included. If you are not familiar with this system of medicine which is over 230 years old and the second-largest system of medicine worldwide, you can go to my website for further info, or the many websites available by reputable doctors who practice Homeopathic Medicine. There are many remedies that can potentially help to improve the pain from the damage you describe. The first example is helping to break down scar tissue. The remedy Thiosinominum in a low potency, twice daily over a period of time can be very successful in accomplishing this. As far as the pain itself, Hypericum for nerve pain, and Arnica or Bellis to help to further heal the disturbed tissue. There are a number of remedies, based on your particular symptoms that can help to get you to the next level without so much discomfort. I suggest finding a reputable Homeopath in your area, or feel free to contact me if you would like further information.
Elana says
Elena, thanks so much. Homeopathy worked well on me a couple decades ago, but has not of late :-(
Lorraine says
Hi Elana,
I had bilateral mastectomies. I did not develop PMPS, although I did have the severe sensitivity and pain to clothes touching my skin for several weeks (or maybe months?) after my BMX. Thankfully, it calmed down and went away. It was miserable. I really, really feel for you.
I did develop significant tightness on my radiated side. I had several fat grafting surgeries which resulted in significant reduction in my tightness and even a partial return of skin sensation on my chest. There are stem cells in the grafted fat – they have healing properties. There is a chance that fat grafting might help reduce some of your pain by healing the damaged nerves. So, it may be something to research further. This requires a really talented plastic surgeon to do it right – so do your due diligence.
According to this literature review: “Among the treatment modalities reviewed, autologous fat grafting had among the highest level evidence supporting its effectiveness in treating PMPS.” (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8426165/)
That review article also has some additional ideas. I wonder if the trigger point injections you had calmed down a trapped intercostal nerve. Seems likely. So glad that is helping some!
I hope this helps. I will also add, if you haven’t tried myofascial release or kinesiotaping, they MIGHT we worth a trial run – you never know.
Thinking of you and hoping for healing.
L
Elana says
Lorraine, this helps a lot, thanks very much.
Stephanie says
Hi Elana
I have followed you over the years and am really sorry to hear what you are experiencing. It really sucks when we move in a direction to be healthier and end up in a spot that can make us feel worse.
My suggestion for you is to look into estim devices. In particular Neu Fit (new.fit). This is not a TENS machine. It is much stronger. I will not even attempt to explain the technology. The device is used for muscle development, rehab, pain ect. They do a lot with neurological conditions, which is how I found them. I can tell you I ended up buying the machine and find it really helps with pain. (There are some PT clinics that use this machine but where I live there are not many.) It also helps calm the nervous system so rest and restore can finally be achieved. The creator has a podcast and also has written a book called The Neufit Method. I am happy to talk to you about my experience and how I use the machine if you want some input from someone that uses it at home. Someone did that for me and it was not only helpful but made me feel more comfortable using this medical device at home. Good luck to you.
Elana says
Stephanie, thank you so much, I ∑ill look into this.
Sheila Gholson says
Consider regular acupuncture treatments, regular Healing Touch sessions for support and EFT, Emotional Freedom Techniques on your own.
I understand at home TENS units, electrical stimulation may provide some relief. I use the Cefaly for migraines.
Elana says
Sheila, thanks for the great comment and inspiring ideas.
Maribell Murray says
Elana, here is a website: SageWomanHerbs.com she has a shop in Colorado. I buy online her herbs for allergies & gout for my hubby. I have a feeling she can help you with your pain. She is a very knowledgeable woman. I am so sorry you’re going through this tough time in your life. You’re a very strong woman. Sending hugs & prayers. <3
Elana says
Thanks Maribell, sending hugs back to you and appreciate the recommendation.
Paula says
Oh no, I am so sad to hear you are having so much pain. It’s not fair! You have been through so much already. My only suggestion would be to try CBD lotion. I don’t know if that’s something you are comfortable with or not. However, I will say I have severe chronic pain (from other issues) and I do get a bit of relief from massaging lotion into the painful are, covering it with something warm for 20 minutes. It’s not perfect but the more tools you have that help even a bit is a good thing. Get that toolbox filled up. Another possibility is massaging in bio oil which seems to help me with scar tissue. There are, of course, stronger options. Not sure you want suggestions that way or not. I have used dry needling for nerve pain and it does help as well. Good luck to you!
Elana says
Paula, I love CBD but unfortunately it hasn’t helped with the pain. I also used a very strong CBD-THCA combo which didn’t help either :-(
Paula says
I’m so sorry. I hope you find something helpful and soon. Don’t give up. Hugs.
Paula
Elana says
Thanks Paula.
Petra says
I would look into Wolfe non-surgical.
Elana says
Thanks Petra.
Miriam Kearney says
Dear Elena, I have, like many others been an on and off follower of blogs so am just catching up because your title line really caught my eye. Let me preface by saying that I have not had a mastectomy but am no stranger to pain. I went through a period during the pandemic when a stenosis in my lower spin had reached blast off stage and the pain from the nerves that were being compressed was so intense I could not even turn over in bed without help. Since my surgery, I too have not had a day without pain and have only recently discovered trigger point injections and nerve blocks. They don’t work all the time, and they seem to take a few injections to seriously reduce the pain but they are working for me. Along with a fistful of pain meds and a cortico-steroid injection in my spine I can now stand and walk for about 20 minutes at a time without pain. It takes me many runs as it but I can do the dishes and clean the kitchen as long as I sit down frequently. It’s different but I do know what it’s like to live with pain and my heart goes out to you. You have been through so much in your life; hopefully you will find some solutions in this wonderful community you have built through all your personal sharings and work.
Elana says
Miriam, I am so sorry to hear about what you are going through. it is life altering and not in a good way. Thanks for being part of this wonderful community.
Jabbara Edwards says
My mother had a mastectomy on one side after finding a small cancerous nodule. She told the surgeon that she had no interest in reconstructive surgery at 75. They left her with a large section of fat and skin under her arm for reconstructive surgery anyways. It severally restricted her arm movement. The surgeon’s sutures looked like something out of Frankenstein, large jagged and ugly. If I ever need such surgery I will think twice and do as much research on the surgeon as possible. I’m sorry you’re going through so much unnecessary pain, it’s unfair and maddening.
Elana says
Jabbara, thank you for sharing your mother’s story here, I am sorry to hear it but not at all surprised. The flat mastectomy surgery industry is unregulated and butchers women. The medical establishment should be ashamed.