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.
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
Renee Clark says
Thank you for your vulnerability in being so open about your experience. All I can say is that I wish you healing and a pain-free future and that you continue to find solace in the support that surrounds you.
I have a friend who is about to go through a double mastectomy. I’m torn about sharing your post with her. I don’t want to scare her and would be interested in your thoughts. Knowledge is power?
Elana says
Renee, that is such a tough decision. Maybe ask her how she is doing, how she feels about the process, and if she has doubts you can tell her to trust her gut. I wish I had.
penny mason says
8 years out from left masectomy, expander removal with scar tissue removal and implant, 4 years out from left implant and scar tissue removal with right closed flat masectomy I still have what you call axilla “thumbtack” pain on both left and right. It is not constant, some days it is “there” some not. Was told it was nerve regeneration or something of that nature. Then there is that iron bra sensation which is not a pain as much as a restriction. The other thing is the high ridge of scar tissue on the left. And acute muscle spasm when I bend down to the left and rear, that makes me fear I will pass out or have a heart attack.
Elana says
Penny, thank you for sharing your story here, I am so sorry for all you have been through, and all you are going through.
Ali Vanleeuwen says
A friend has highly recommended “the way out” by Alan Gordon for healing chronic pain.
Elana says
Thanks Ali.
ELIZABETH PEARCE says
Thanks for your descriptive update, Elana. I hope that you will be pain free very soon.
Zai gezunt!
Liz
Elana says
Thanks so much Liz.
Seema says
Elana – you might investigate the Like Mind, Like Body podcast and curable app in terms of additional modalities/viewpoints on coping with chronic severe pain. Some of the stories are revelatory and may offer you some hope.
Elana says
Thanks Seema.
Joan M. Balue says
I had what should have been a lump removal turn into a mastectomy due to covid shutdowns. I chose flat.
I have occasional pain mostly underarm where lymph node was and along the centerline between breast area where there seems to be scar tissue lumps.
I use Celadrin cream and gel caps for pain relief. (active ingredient A cetyl fatty ester, cetyl mysterolite) PS costcoonline.com or amazon
I am starting to use Vit E doe scar tissue removal
Elana says
Joan, I am so sorry this happened to you. Thanks for the advice.
Janelle says
I am so sorry for all you have been though. I am a physical therapist that works exclusively with cancer patients and a large percentage are breast cancer survivors. You are NOT alone in your experience. A large percentage of the women I work with – flat closure and reconstruction both – experience chronic pain that the medical community often ignores. I hope you find hope and healing!
Elana says
Thanks so much Janelle.
Joanna says
Elana, that thumbtack pain in your armpit might actually be a clip. They put them in to mark areas where there might be scar tissue from, say, the removal of a lymph node. This is so that, down the road, they can differentiate between scar tissue and new cancer.
I’m so sorry for all you’re going through. No, you’re not insane or losing it. This type of thing is very real. But maybe you can take a bit of comfort in the fact that you are not suffering the curse of breast implants. So many women are suffering from BII and breast-implant associated cancers. I’m very glad you made the intelligent decision to NOT do reconstruction. I hope this painful experience will eventually resolve. Sending love.
Elana says
Joanne, thanks for pointing this out. My surgeon told me there were no issues at all (healthwise) with getting breast implants. So glad I did not listen to her! But I should have run the other way from this dishonest practitioner and not let her touch me.
Liesje says
If every doctor who performed these procedures could daily feel the pain you feel, MUCH MORE would be done to solve this tragedy. I am so sorry, and wish this hadn’t happened to you.
Elana says
Liesje, there were 6 doctors that operated on me in that one surgery –doesn’t seem like they had their ducks in a row.
Jeff Maloney says
God bless you, Elana!!
Elana says
Thanks Jeff.