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
Darcy McCain says
Hi Elana,
I’m so sorry for the many ordeals you have experienced, as well as the continuous pain you’re enduring. I had a mastectomy & reconstruction, so I can relate to pain and complications.
I would love to give you a free 75 min Clinical EFT Tapping session, via ZOOM.
My booking calendar link is:
https://tapintoemotionalfreedomwithdarcy.as.me/schedule.php?fbclid=IwAR3EXptngYvyUzvYw-jSY9dnNoz_c3PJWmYK_lWQFS8qaMR5x858iFahG8w
For the Free Session Code, please email me at darcy.eft@gmail.com
EFT is a scientifically validated stress relieving tool, endorsed by the APA and the VA. It involves Tapping on Energy Meridians on the face and torso, whilst combining aspects of Cognitive Behavioral & Exposure Therapies. It’s clinically proven to calm the Amygdala (The alarm system of the brain, that goes into fight, flight and freeze) lower the stress hormone Cortisol by 43% and calm the nervous system. It positively influences the expression of 72 different different genes, including those that boost the immune system.
Clinical studies show EFT lowered pain in trial participants by 68%. It is also effective for PTSD, food cravings, unwanted habits, anxiety, phobias, and more.
Scientific research on EFT for pain:
https://www.thetappingsolution.com/blog/?search=pain+research
EFT Universe’s scientifically validated research:
https://eftuniverse.com/research-studies/
Blessings on your healing journey!
Elana says
Thanks you Darcy, that is so incredibly kind of you <3
nancy young says
Hello Elana, I have been following your recipes for years. They have helped me navigate the no gluten, no grains, and no legume and no sugar picture and stay nourished and positive. I wonder if you have thought about going to a shaman to get a soul retrieval? It seems to me that in addition to your physical breast removal, that a soul piece of you may have been lost in the process. If I may, would also suggest that you have someone (An advanced CranioSacral therapist?) help you remove the nonphysical too small shirt.
I am an advanced CranioSacral Therapist near Ithaca, NY. My teacher, Mary, does excellent remote work. Perhaps she could be of help to you. {Mary Derry (845)283-1583}. Please tell her that I suggested that she contact you, if you call her.
Elana says
Nancy, I think you’re on to something <3
Sms says
My wife’s experience was overall positive once she left the male surgeon who did mild flat denial and the a**hole plastic surgeon who told her “she’d never feel like a woman whenever she’d had to put on an evening dress.” I was in the room for both the surgeons.
But even with a great female surgeon who made her feel comfortable, she does have a result that sounds similar, perhaps milder, than yours in that her non-cancer side is more hollow, has significantly less rage of motion, and causes more pain (no lymph node removal on that side either).
Looking forward to hearing hopefully good news regarding progress with your approaches to this chronic pain. thanks for your blog.
Elana says
Sms, I am so sorry to hear about all that your wife has gone through. Unbelievable that a surgeon dared to say: “she’d never feel like a woman whenever she’d had to put on an evening dress.” These surgeons must stop projecting their own heteronormative beliefs upon women in life or death situations. It is ugly of them.
Anne says
Elana, I love you.
Elana says
Anna, right back at you. i needed to hear this today, thank you.
Marilyn G says
Hi Elana… I cannot believe all that you have gone through in your lifetime! I started looking at your recipes I think in 2015 when I had to do a no sugar diet. I saw your post for support and I’m not a breast cancer survivor… my mother did have a B-cell lymphoma cancer that I supported her on natural nutrition and recommended a doctor who knew what nutrients (the ones I consult on) that were important for her situation. So that said there are some natural supplements that can heal nerves which I do know about and wonder if you are on? I’ve looked up your health challenge and don’t see it listed. I did have a lady who had breast cancer surgery and I did recommend the supplements I would recommend to you. I believe they helped her. Any way my conscience wouldn’t let me just read your story and and not say anything.
Elana says
Marilyn, thanks for your support. One of the supplements I’m on for nerve damage is ALA –would love to hear your ideas for others.
Charlotte says
I have nothing to offer but loving compassionate and support, but I did want to ask you to continue the updates. I hope our comments offer you some healing support emotionally, and I also believe you are giving an ear and a voice to women everywhere who suffer from botched medical procedures of all kinds and also suffer from those doctors (hopefully few!) who have become innured to basic human compassion for their patients.
Elana says
Charlotte, thank you for this comment. Your support is an emotional lifeline after the gaslighting of so many doctors. I am grateful for you.
Laurie says
Good morning,
This is way out of the box. but may be very helpful with your pain. My friend has trigeminal neuralgia and was taking pain medication several times a day.
She researched and came up with the book Celery Juice by Anthony William. it took about 6 months but she is pain free with no meds.
thanks for being you ❤️
Elana says
Laurie, thanks so much for your sweet comment and suggestion.
Elyse says
I am distressed to hear of the on going pain you experience from your mastectomy. I have followed you and used your recipes for years.
Just yesterday I was told told of a close friend of my sister-in-law who is a breast cancer survivor and the group she participates in. My family went to see her compete in Dragon Boat Racing. This particular group of paddlers was from Connecticut and the race was held on the Charles River in Boston. I instantly thought of you. Apparently there are groups all over the world. Dragon Racing is for specifically helpful for Lymphedema as a result of cancer treatment. Whether it would benefit you in any way I really don’t know but I just thought I would throw this out there for your consideration in the off chance it could be helpful to you in the future. I don’t know the effect on pain management if any. It is quite strenuous.
https://www.cancerhealth.com/article/dragon-boat-racing-breast-cancer-lymphedema
Living with chronic pain is a misery. I wish you the best and hope you find a solution.
Elana says
Elyse, thanks for your comment and that great idea. I haven’t rowed much but swimming and other water activities seem to help.
Jennifer says
Hi Elana,
So sorry to hear about your complicated, frustrating, and painful experience with breast cancer. Pain is something that inherently changes you, and it’s so hard to mourn yet another part of ourselves.
Background: I started following your recipes a few years ago, when I was diagnosed with chronic autoimmune issues, so thank you for sharing so much of yourself with others, it has definitely helped me very much. In addition, I am a physician (anesthesiologist) with some experience in nerve blocks and pain.
I’m sure you’ve been advised by many health care team members, but in case things get lost in the shuffle, with acute nerve pain, you may consider supplements (vitamin C, fish oil, alpha lipoic acid, L carnitine transferase), and with chronic pain, many times the treatment options end up numbing the affected area, so it goes from a hypersensitive region to feeling numb, neither or which are desired outcomes.
I hope you are able to find improvement with physical therapy, massage, acupuncture, and other modalities. Please continue to update us. We are here to lift and support you, xx!
Elana says
Jennifer, thanks for your fantastic comment. I am getting temporary relief from PT, massage, acupuncture, etc. I recently tried ALA and found a more system healing of the Mx area from that Rx.
Diane Massey-Todd says
Hello Elana
I am so grateful for the information you have provided.
I followed the links and saw many post-op photos of women with ‘flat closure’. I will remember the images for the rest of my life.
Illuminating this issue is vital for the healing of individuals injured in the care of reckless, disrespectful practitioners. Thank you.
Best, Diane Massey-Todd
Elana says
Diane, I’m grateful for your comment, many thanks.