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
Sara says
This post does bring a tear to my eye. I really hope that this gets better and medical practitioners that are more attentive come your way.
Elana says
Sara, thank you for your kind words.
Melissa says
I’m in active treatment for node positive Stage 2 triple negative breast cancer. I also have a BRCA2 mutation. Will be having a double mastectomy in November. I’m leaning toward a flat closure and have my first consult with a plastic surgeon this week. Thank you for sharing your story in an effort to help other women avoid the pain and disappointment you’ve suffered. I will be asking more specific questions of the surgeon after reading about your experience. I pray you find skilled and compassionate practitioners to help relieve your pain and support you on your healing journey.
Elana says
Melissa, I’m so sorry to hear about what you are going through. One thing I wish I had done is ask for pictures of the surgeon’s work. If they can’t show you a good photo they’re probably not the one –at least that was my experience. LMK if you have any questions.
Holly says
Thanks to Elana and this beautiful community for sharing. One thing that helped me post lumpectomy was breast cancer PT. It isn’t generally offered as a regular stop on the cancer train* and I was lucky to learn of it.
It’s offered at a PT unit affiliated with our local hospital, the PT massaged, stretched and moved tissue around to drain the seroma (hole filled with fluid) and stave off lymphedema. It also helped me normalize my new body – having someone touch my scars (with kindness and free of judgment) helped tremendously.
* Once diagnosed, it felt like I boarded the cancer train that assumed you’d visit all the pre established stations: scan, biopsy, surgery, reconstruction, radiation, chemo, oncology, scan, etc. It took a moment to realize I had choices along the way. Xo
Elana says
Holly, the cancer PTs are quite good –I’ve seen four of them.
Elizabeth says
Elana, my sister had a tumor the size of a grapefruit. It started small and in the period of 2 years grew enormously. She went to a doctor here in town and was told she had cancer (with absolutely no exams) and that she was to expensive for her, since my sister had no insurance. As you can imagine she was devastated. A friend referred her to a doctor in Mexico. She went, had tests done and sure enough it was cancer. She was operated, and the tumor was removed. The difference between doctors here in the states and elsewhere is that doctors here in the states profit from cancer patients. The surgeon cut much much more around the tumor that they would have here in the states. Probably 2 to 3 inches more. He told my sister that is one way of completely removing the probability of the CANCER returning. Furthermore, we are believers who also prayed very much for her. It is only now that I am reading about your breast cancer and the incredible pain you have been subjected to. It is absolutely alarming what doctors here in the states can do.
we are fortunate to live in a border city.
My daughter too had a mental illness which was treated across the border in Mexico ten years ago. I was very hesitant to treat here in the states. I know now that they would have fried her brain with all the medication they prescribe here or she would have been subjected to a Behavioral Center.
I will be praying that Jesus heals you from that pain completely.
Elana says
Thanks Elizabeth. So sorry your sister and daughter, and you have had to go through all of this.