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.
Sue says
Please try Practical Homeopathy from Joette Calabrese for pain. You can get an online educational consultation.
Elana says
Thanks Sue.
Linda says
Elana, just wondering if you could check out Earthing or Grounding? There is a short 15 minute or longer version movie on youtube by Clint Ober. It is basically walking barefoot or laying on the ground letting the anti oxidant & antiflammitory properties of the Earth help heal. I’m 66 & can tell mentally & physically a difference sleeping on a grounding mat & walking/sitting on the ground daily. It’s free & an amazing connection to the Earth.
Elana says
Linda, I LOVE grounding, it is the best.
Christine says
Sommato-Emotional Release (SER) Technique with an Upledger-trained therapist. FMT therapists are also phenomenal. I am a BIG fan of the limbic system retraining work as well (Annie Hopper and Lindsay Mitchell). Or you can come to visit me in NH and I will get you in with all the best <3
Elana says
Christine, thank you! I am a big fan of DNRS. i didn’t mention it in the blog post but my right side feels like it is 3 sizes too small and it is very uncomfortable. I think I was not stitched up properly, but none of the docs will look at another doc’s work. I get a lot of scrips for pain meds, blah.
TJ says
Hi, Elana! I’m also in the Boulder area and have had a bilateral mastectomy and radiation after, though I had reconstruction, which has its own challenges for me currently. I also tend toward hypertrophic scarring. I’ve come across some things recently that I thought I’d share. I do not have a pain syndrome or experience with either of these yet but perhaps they’ll give you a different place to look for solutions. First is thiamine (B1) which seems to be helpful for neuropathy and many other mystery conditions. Evidently, the body can be depleted of it through medications like antibiotics and anesthesia. Note that there are several forms of B1– water and fat soluble versions— to explore. I’ve run across several YouTube videos by doctors explaining how thiamine works and how to take it. Another option to look into is St. John’s Wort oil, which I’ve seen touted as being helpful with nerve pain. Since it would be used topically, my hope would be that there’d be less concern with adverse drug interactions but please check into that before trying it. I’m pretty sure the cancer drug I’m on lists it as a contraindication, but I think that means orally. I wish you the best for your healing.
TJ says
Also, you might want to consider finding a homeopath to see if there could be relief for you in the homeopathy world. Another idea popped to mind also… check into fascia blasting. Ashley Black has resources and tools to help address conditions related to fascia problems, of which there spreads to be many.
Elana says
Thanks TJ!
Elana says
TJ, thanks for your comment. I am so sorry to hear that you suffer from hypertrophic scaring. I have had numerous surgeries and the scars healed so well they are mostly invisible and totally painless. But this one was different, my PCP said the scar was sloppy and that made it inflamed. I love St. Johnswort, just started it a couple of weeks ago but has made no dent in my pain. I’m so so sorry to hear you are going through cancer treatment including a bilateral mastectomy and radiation. I am thinking of you and wishing you all the best.
Damselfly says
I am speechless and heartbroken for you. I am shocked there isn’t more support for women in this area. I wish I had some ideas for you. Maybe look into cold laser. It has helped me a little with an unrelated issue.
Also, I think you should name the doctor that did this to you to help save others.
As you can tell, I am a little angry about what you are dealing with.
Take care Elana. You deserve better than this.
Elana says
Thank you my dear friend Damselfly, for your anger, support, and care.
K Nusbaum says
I’m so sorry you are going through all of this. You have been an inspiration to me an my gluten free family. Although I do not have any personal experience with us, I shared your story with my husband, Dr. Jeffrey Nusbaum who is a holistic MD in Michigan. He said that the systemic enzymes are very helpful with this kind of pain. Systemic enzymes reduce scar tissue and decrease inflammation. He mentioned a few brands but I don’t know if I should post them here. Please feel free to email if you would like and I will give you the brands. You are so smart to reach out to your community. Healing is coming ❤️
Elana says
K, you are fantastic. Thank you for speaking with your husband about my situation. Are these enzymes taken topically, orally, or injected? Feel free to post links here.
Laurie says
please look into Celery Juice by Anthony William.
Elana says
Laurie, celery juice is incredible and I love it, drinking it for years –I hadn’t heard that it helped with amputation pains, but thanks for suggesting.
Lindsay says
P.S. Elana! sorry my phone autocorrected your name to be spelled wrong!!
Elana says
Sending you hugs.
Lindsay says
Hi Elena, when scanning through my email today I happened upon your story and it brought tears to my eyes. I just had a single mastectomy 2 weeks ago. I have other autoimmune issues and did not want the typical option of silicone implants and opted for a DIEP flap reconstruction where they use your own fat to recreate a breast. I know the pain you are speaking of on a a way more minor scale. I am healing well and I am hopeful the zingers in my arm and breast will go away but I can’t imagine living with what you are describing everyday. In my search for someone who would do a DIEP flap reconstruction for me (I am very thin due mostly to my microscopic colitis) I came across a doctor that recommended using a hyperbaric chamber after a fat tissue transfer. I don’t know if you have looked into hyperbaric chambers at all, but the healing that the oxygen provides seems like it could be a good option for you to try? Double blind studies have shown the effectiveness of HBOT in treating victims of stroke, burn, and delayed wound healing. Other studies show improvements in a wide variety of quality of life issues and after googling a tiny bit it seems like it can help with nerve damage as well. I can’t claim I know a lot about it, but thought I would put it out there Incase you wanted to look into it. I am praying for your recovery and return to happy pain free life. Sending love and good energy your way.
Elana says
Lindsay, HBOT is the BEST, I’ve done it for years. Did you go to Dr. Cassileth for your DIEP flap? I have heard the most amazing things about her work.
Johanna N Arora says
Sending healing prayers to you. I know you do extensive research, but have you tried cranial sacral therapy?
Elana says
Johanna, I love cranial sacral, been getting it for 30 years, still getting it.