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
Ilene says
Dear Elena, Thank you for what you’ve shared here and in your previous essays on your experience with breast cancer and the aftermath of your surgery. I’ve read them all closely. I’m deeply moved, saddened, and angered by the gross mistreatment that you and others have experienced at the hands of surgeons. The post prior to this one serves as an incredible resource to anyone suffering chronic physical pain and its profound emotional effects. It is not surprising to me–having been a reader and a huge fan of yours for, well, forever–that even as you are suffering so you continue to share, educate, empower, and build community. I truly hope that you find relief soon. I also hope that your experience helps women and those who love them to seek out the best surgeon possible when faced with crucial decisions, though with full awareness that such decisions come at the most vulnerable, frightening, and stressful time in one’s life (and that profound inequities in our medical system constrain choice for so many). Sending you healing thoughts, gratitude, and admiration. You are a bright light in this world.
Elana says
Ilene, thanks for your sweet and thoughtful comment, and especially for saying this, “…even as you are suffering so you continue to share, educate, empower, and build community.” I needed to be reminded of that today.
Sandy Hardwick-Pettis says
My name is Sandy and I was officially diagnosed with Right Carcinoma in situ and infiltrating Estrogen and Progesterone tumor in February and April 2023. I chose to have bilateral mastectomies with reconstruction, that was April 17 and had to have a second surgery a week later April 24 to remove necrotic (dead) tissue – both nipples and areolas and part of right breast skin and the implant from that side. It took about 2 months for the incisions to heal completely. I was on pain meds, ect. for a couple of months and am now on CBD salve and drops and they are helping me a lot. I just started Physical Therapy last week and am making great progress. My movement and activities were greatly restricted for the two months until the incisions were healed. I am aware of tightness and discomfort and sometimes pain with increased movement, especially with any weight. Fortunately I have had most wonderful doctors and physical therapist and team. My wife and I are grateful for the fabulous care I have received here in Costa Rica where we live. We have had many people praying for us, checking on us and we have had and maintained a positive attitude. I am available for any comments or answer any questions.
Elana says
Sandy, I’m so sorry to hear about all that you have gone through, it sounds like quite a lot. Thanks so much for sharing your story here.
Joann says
I was diagnosed with stage 3 triple negative breast cancer in October 2020. I went through almost a year of chemo, then had a single mastectomy. I did not have the option of reconstruction for at least a year after surgery because of the aggressive nature and size of the tumor. I was also advised to consider having an additional surgery after that year of recovery to remove the other breast & have full reconstruction at that time. I opted for neither because I tested negatively for the BRCA & did not want to put my body through any unnecessary additional surgeries & recovery.
I went through PT for lymphedema, but still occasionally have flair ups. I never wear a bra or tight (under the arms) clothing because of the pain it causes.
I still go for regular doctor visits & have recently been released to visits every 6 months.
Learning to live with a very different body has been difficult, and unfortunately I have not found a close community that understands or has been through what I have.
I think you are so brave for talking about this so openly.
Elana says
Joann, I am so sorry to hear about all that you have been through. Thanks for sharing your story here and for your kind words of support <3
Renate Lapenat says
Blessings and healing mercies from our Lord God dear Elana!
Elana says
Thanks Renate.
Sheila Thomas Hill says
I am saddened to hear of the pain with which you now live, Elana. Hugs, prayers and healing to you and to your family. The responses you have received are beyond comprehension and must be such a support and a validation of your experiences and your trauma. Thank you for sharing this publicly.
Elana says
Thanks so much for your support Sheila.
Valerie says
Also: You shouldn’t ever have had to go through this. I hope you find a better resolution soon. Hugs!!!
Elana says
Thank you Valerie –hugs back to you.
Valerie says
What worries me is that my son is trans and wants top surgery, which I think could turn out like yours. He says not to worry about it, it’ll be fine. But I worry. And worry, and worry. Sigh…
Elana says
Valerie –not to worry, the trans doctors are phenomenal and I wish I had used one. They are not in the habit of butchering women with cancer.
Debbie E says
I am a breast cancer survivor but luckily mine was caught early. I often wondered if i should have had a mastectomy to lessen the fear of recurrence. I didn’t even think about possible pain from a flat procedure. Did they offer you are PT to help with scar tissue? I wonder if some of the tightening under your arms etc could be helped. I appreciate you sharing your journey and hope you can get the relief you need.
Elana says
Debbie, thanks for your comment. Mine was caught at stage one, but further treatment was aggressively recommended. I opted for a double mastectomy due to my BRCA status and to avoid further surgeries and I did not want any of the recommended radiation. I do not regret the decision for the mastectomy, but do regret choosing a surgeon who told me she could perform a flat closure, but who did not have in depth knowledge of the procedure and did carry it out appropriately.
Abigail Tilsner says
I am so saddened by your story of not only being diagnosed with BR CA but of then after having made the very difficult decision of getting the double mastectomy, living now with chronic pain.
I have been investigating the effects of oxalate overload which can play a role in chronic pain. Please look into this diet in which you can easily substitute for the biggest offenders such as almonds, spinach, beets, and potatoes, but you will see if it is helpful in around 10 days time.
Best of luck and I look forward to your recovery story and continuing inspiration!
Elana says
Abigail, thanks for your wonderful comment.
Debbie says
You are a woman of strength. To share as you are will help many to more knowledgeably navigate the waters of breast cancer. May you find relief from the pain. May the love and caring that surrounds you bring healing.
Elana says
Debbie, thanks for your sweet comment.