Post Mastectomy Pain Syndrome

Post Mastectomy Pain Syndrome

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
  • 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.

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