Over the last year or so, I’ve written about my experience with a breast cancer diagnosis, and recently, about the chest wall pain that resulted from a double mastectomy.
Mastectomy Chest Wall Pain Update
Now I’d like to provide you with an update on this situation.
Breast Cancer and Double Mastectomy with Flat Closure
In case you’re just joining us here, I was diagnosed with breast cancer in August 2021.
In February 2022 I had my breasts removed in a double mastectomy with flat closure, which means no implants. The procedure resulted in numerous complications and issues.
Resulting Chest Wall Pain
This double mastectomy with flat closure did not go well, and I am still dealing with the fallout of the procedure.
During my travails, shlepping from doctor to doctor to find relief, I have found that, in general, physicians are reticent to speak to another doctor’s work, or lack thereof.
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This has cost me dearly, and also made me question my sanity.
Your Comments, Your Support ❤️
But thanks to you my dear readers, I am still here, still sane.
I owe you all, a debt of gratitude, for sharing your incredible advice. I am so lucky to be blessed by this loving community.
Reader Comment: Mastectomy Chest Wall Pain
Here is a comment from one of many kind readers. There are so many others that saved me from giving up, from thinking I was totally crazy:
“I am full of sorrow for you and your sweet family. I am angry at your doctors… To observe an intentional, intelligent, conscientious person such as yourself receiving such a level of blundering care (at the least) is maddening and unconscionable. I am at a loss. I am grieving for you.”
Hundreds of Comments Re: Intractable Pain
The above comment was in response to my PMPS blog post.
In that post, I outlined the intractable pain I am experiencing as a result of the double mastectomy I consented to, in order to put the suffering of cancer, behind me.
Three Types of Support
Your hundreds of comments, like the one above, gave me three important types of support when I needed it.
Confirmation Of Reality
The first type of support was a confirmation of reality.
This was very helpful, after I was gaslighted by the medical community and thought I might lose my mind, after I lost my breasts.
Your Healing Solutions for Intractable Pain from Mastectomy
The second type of support you gave was in the form of healing solutions. You shared the most incredible ideas. Here is a small sampling:
- BioXcellerator
- Bowen Therapy
- E-Stim Therapy
- Fascia Blasting
- Frequency Specific Micro Current
- Immunoglobulins
- IV Therapy: PK Protocol
- Ketamine Topical Pain Creams
- Low Light Pulse Laser
- Near Infrared Treatments
- Neural Prolotherapy
- Red Light Therapy
Support from Around the Country
The third type of support was contact, even phone calls, from other women who had botched flat closure mastectomies with careless, carved out results like my own.
Botched Flat Closure Mastectomy
I have now learned that there are far too many women who have very poor flat closure mastectomy outcomes.
In fact, this UCLA study indicates it may exceed one in five women.
How to Deal with Intractable Pain?
Still, even with your tremendous outpouring of support and incredible healing solutions, I was dealing with intractable pain.
As you can imagine, living with intractable pain as a result of the double mastectomy that I was told would give me relief and peace of mind, has been far from easy.
Lateral Chest Wall Pain
Still, I did not give up and focused on the sensations and etiology of the pain to find a solution.
I went deeper and questioned the pain. How exactly does it feel? Where does it hurt, what is the type of pain?
Describing the Intractable Pain
In doing so, I realized that in addition to the intractable pain I mentioned in my PMPS blog post, there were even more specific ways to describe this syndrome.
Intractable Pain in the Axilla
Much of the pain and discomfort I experience is the restricted feeling of wearing a shirt that is 3 sizes too small for me, but the shirt is inside my own body. It also feels like my armpit has been shrunken in and pinned down, a tight, vice-like feeling.
Then there is the sensation of a strange, painful seam inside my body, and the feeling of a thumbtack in my right axilla.
Post Mastectomy Pain Syndrome
Now that I understand these components of this intractable pain and can better describe it, I am making a bit more progress in treatment.
Stay tuned to hear more about how I am navigating the fallout from a botched flat closure mastectomy.
Thank You
Readers, I cannot thank you enough for listening and providing solutions.
This has been crucial for me when the medical system could not, or would not, help.
What’s Your Mastectomy or Breast Cancer Story?
If you, your sister, daughter, mother, friend, or anyone you know has suffered from breast cancer leave a comment and let me know how they fared.
I first shared this article on June 23, 2023
Laura says
Elena, I am a physical therapist who specializes in persistent pain, pelvic health, as well as being part of the oncology team to help women manage the cancer journey. There is no one I could recommend more to you from a physical therapy intervention to help with this pain than Susannah Haarmann at kickpink.com. She is the most knowledgeable, skilled, and heartfelt therapist who may have techniques and solutions to help reduce your pain. Please know there is a solution out there to help reduce your pain. May you have ease of mind.
Elana says
Thank you Laura!