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
Anonymous says
I’m a very longtime reader of your blog, and I have several of your cookbooks. I’ve been following your journey with very much sympathy for you, and horror at how you were treated.
I do have a question: My son is transgender and wants to have top surgery. Every time he talks about it, I think of you and am terrified for his safety. Should I try to stop him, or let him go ahead with this surgery?
Elana says
Anonymous, thanks you for your kind words and for your sympathy and horror. To start, I am touched that you would check in with me, a cis woman, regarding top surgery, and want to acknowledge my limitations in responding to your inquiry. That said, top surgery is a form of mastectomy, though top surgery is not an oncological mastectomy so there are some differences. From my research I have heard that the FTM (female to male) surgical world is quite far ahead of the oncology world when it comes to mastectomy surgery. There are numerous oncology mastectomy surgery medical battery stories, in fact, a UCLA study reports that as many as 1 in 5 women are medically battered when they attempt to get flat closure mastectomy. This may be because the oncology world is fixated on giving women breast implants due to heteronormative bias and economic motivations and sees fit to “punish” women who fail to conform to that expected outcome. If I had a child who wanted to get top surgery I would be far more hopeful of their outcome than that of a woman trying to go flat. LMK if you have any other questions and please keep in touch.
Anne says
Elena I was just thinking something I don’t know how long your surgery was but maybe there is a chance your idiot surgical team positioned you poorly and damaged your brachial nerve. I have brachial plexus injury. Look into that. So sorry and I am still so angry. I am trying to be positive but pain sucks when caused my clinicians. Sending positivity.
Elana says
Anne, thanks for your comment and thoughts, incredibly astute. I think there may be something to what you’re saying. It’s more than 2 years since the surgery and I’m using lidocaine patches for the pain in the brachial area. Take good care and let’s keep in touch.
Anne says
Elena,
Sometimes when the brachial nerve is damaged or injured stretching, overly stretching can just put the nerve under more stress. Have you had an EMG of you brachial nerve or seen a neurologist? Nerves take time to heal. But they do heal. Unless someone had a nerve injury that can’t feel what you are feeling. UCSF has a brachial nerve center maybe they can refer you to someone in your area. The reason I know about this the brachial plexus is because I was positioned poorly in a mri machine for 3 hours strapped down hyperventilating and could not say anything because I was traumatized, to top it if I had anaphylaxis from the contrast agent and developed RA. Anyways I feel your pain and just wanted you to keep the brachial area in your mind. God know what happens during surgery.
Anne says
Also Elena the brachial nerve can be damaged when a drug is administered during the IV line. Maybe the nerve was injured and then the surgery happened and the nerve suffered. This is a huge area the brachial nerve. No one thinks about it unless maybe someone like me is injured or from a trauma such as a birth through the vaginal canal and the baby’s arm is stuck. But you can get better.
Lesley says
Hi Elana, I’ve enjoyed your recipes for many years. I’m just learning of your experience with Breast Cancer today. I can’t imagine how you feel. I decided to only have the lumpectomy and sentinel node biopsy when I was diagnosed in August 2023 and surgery was in September. Radiation begins January 2nd. Breast Cancer creates this alternate universe within your own life. When I’m out running, or playing ball with my dog, and working with my clients, I’m the strong, resilient, optimist, who’s happy and energetic. Other times I silently cry while I work with my clients and give myself mental pep talks to not think about it. At night I fret about dying before my dog and what will happen to her. No amount of type-A planning saves me from all the fears.
With all that said, I wanted to write to you because of your description of what you are feeling after your double mastectomy: I haven’t read any details about what you are doing for treatment, but do you see a massage therapist trained in Myofascial Release and post-mastectomy massage? Nerve injuries are common too and injuries to the fascia can cause pain and restriction that feels similar to nerve injuries. Chronic pain takes up so much headspace and you already have enough to deal with. I truly hope there is a solution for you.
Elana says
Lesley, thanks for your comment –I am so very sorry to hear that you have entered the nightmare of the breast cancer treatment system. Yes, I have seen massage therapists with expertise in “anatomy trains” work and also have some great onco PTs. I am being told that the mastectomy was more aggressive than it should have been causing an injury. Please stay in touch and keep me posted on how you’re doing.
Grace says
I’m so sorry. I pray for you every time I go on your website. Thank you for your candor, thank you for using this as a platform for you and others to share their experiences.
Elana says
Grace, thank you for your prayers <3
Deb says
Hi Elana,
I’m very sorry to hear about your struggles. I have enjoyed your website and recipes for many years.
I am a two time cancer survivor (uterine and breast) and BRCA1 positive – which I only found out about in the middle of chemo for my second cancer.
After I had a double mastectomy and reconstruction and at the Centre for Restorative Breast Surgery in New Orleans. (It was a big trip as I am from Canada.) My doctor was Dr. DellaCroce.
I have to say, it was practically the only thing about my 2 cancer treatments that WASN’T traumatic! They run a very professional tight ship there (or at least did when I was there in 2013.)
I’m wondering if it would be worth it for you to get a consultation from them. To see whether they could help you at all with the surgical site and scar tissue. They seem to have a reputation for fixing up badly done mastectomies… Just a thought.
I have done – and continue to do – lots of myofascial release, osteopathy, and acupuncture. It all helps a little.
Wishing you all the best!
Elana says
Deb, thank you for the rec! I have heard great things about Dr. DellaCroce :-)
Cathy says
Hello, Elana,
I too have used your recipes over the years and am very sorry that you had breast cancer, in the first place, and then the poor surgery. It sounds like way too many people have problems with their surgeries, regardless of the type of surgery the select.
I am also a Certified Lymphedema Therapist. You have a great resource there in Boulder, Klose Training. They have trained more than 4,000 therapists, https://directory.klosetraining.com/. I would hope that many of those who have made comments here could find a therapist who could help them.
My sister recently had surgery at the Center for Restorative Breast Surgery in New Orleans. Her surgeon was Dr. Wise. She is very happy with the outcome and highly recommends him. Many of her pre-surgery challenges have gone away post surgery.
I hope that you find relief from the pain caused by your previous surgery.
Elana says
Cathy, thanks for your incredibly sweet comment. I have worked with 2 of the lymphatic specialists from Klose and they are highly skilled. Question re: your sister. Can you LMK what her pre-surgery challenges were? Did she have 2 surgeries? Thank you so much.
Laura Teague says
Lovely Elana:
Just passing on a couple of tips not yet mentioned!
1. Acupuncture! Yes, It can break up scar tissue and do amazing things! (Great pricing for treatments at schools for Traditional Chinese Medicine TCM), overseen by TCM doctors. It has worked in just 1 treatment for scar tissue on a surgery where the surgeon cut my abdominal muscle to do his other work. It left me in great pain all the time, especially when my bowels were moving! Acupuncture is also working on my lower back pain due to compressed nerves.
2. Grated Potato Poultice! It’s great for tissue inflammation. Look for “Living Springs Retreat” on YouTube, Barbara O’Neil (An Aussie). There are many ‘shorts’ on “natural remedies” put out by Living Springs Retreat. Grated potato peel…try it, it’s cheap, but it might stain your sheets. Barbara O’Neil is a Seventh-Day Adventist, following the heath teachings of their founder, Ellen G. White who was a woman ahead of her time in regards to health.
Blessings to you and your family Elana.
Elana says
Laura, thanks for the potato peel rec, I found a medical study discussing the benefits –will give it a try!
Brooke says
I didn’t know this was a thing! I have been dealing with this for over 5 years and have always been told “it is just part of it”!!!!!!!!!!!!
Thank you for the renewed hope and wish you the best on your healing.
Elana says
Brooke, thanks for your comment. Glad we found each other on this challenging journey.
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.