Much time has passed since February 2022 when I had my breasts removed in a double mastectomy.
Yet, I still have so much mastectomy pain that I am wearing an ice pack on my chest as I sit at the computer typing out these words.
Post Mastectomy Pain Syndrome
I’ve bounced back from a number of different health issues and made lemonade out of lemons more than most.
So it’s hard to stare at the screen and take in this scenario that I am not only writing about, but that I am living in moment to moment.
Chronic Chest Wall Pain
It’s harder still, to acknowledge to myself, that this is now my life. A life with chronic chest wall pain.
Diagnosed with Breast Cancer
When I was diagnosed with breast cancer (invasive lobular carcinoma), I was full of options, full of hope.
Today, that is no longer the case as I continue to suffer from post mastectomy pain syndrome, or PMPS.
Flat Chest Mastectomy Without Implants
I had both of my breasts amputated and did not get implants because the surgery for a flat chest is supposed to be far more simple and the recovery time much shorter, than traditional reconstruction with implants.
If you’re looking for more information on aesthetic flat closure, you must visit leading women’s health expert, Kim Bowles’ website Not Putting On A Shirt.
Flat Chest Mastectomy
I had high hopes for my flat chest mastectomy which according to the paper Not Just a Linear Closure: Aesthetic Flat Closure After Mastectomy1 and the National Cancer Institute2 consists of the following:
- Rebuilding the Chest Wall
- Smooth Contour
- Symmetry – “ensure the same size flap thickness bilaterally”
Poor Surgical Outcome
My surgery did not result in any of the above.
I was shocked after surgery when I took off the bandages and saw that my expectations of the surgery were not in line with the results we discussed.
But that’s not what I’m writing about today. Today I’m writing about the pain that came with my poor surgical outcome. The outcome that missed all of the NCI’s above stated goals.
Mastectomy Concavity
The main issue seems to be that the once healthy side of my chest is now concave, painfully carved out, with an indent in it.
It looks like I’ve been left with skin and bones on the right side, and it feels like it too.
MRI and Second Opinion
Both imaging and a second opinion have shown that the mastectomy surgery on the right side was far more aggressive and the naked eye can easily see this as well.
During an examination, the kind surgeon who provided me with a second opinion told me that rather than being built up, part of my chest wall was actually taken, in the overly aggressive mastectomy.
Armpit Pain
I mention this because I am concerned that there is a connection between the concavity and the pain. If you know anything about this please leave a comment.
What is Post Mastectomy Pain Syndrome?
Let’s back up a minute to discuss post mastectomy pain syndrome, or PMPS. According to the American Cancer Society PMPS is thought to be:
“Linked to damage done to the nerves in the armpit and chest during surgery. [Those] who have had axillary lymph node dissection and not just a sentinel lymph node biopsy, or who were treated with radiation after surgery are more likely to have problems with PMPS.”
The above does not apply to me. I did not have any lymph node dissection whatsoever on the right side, nor did I have any radiation at all.
In fact, I did not have cancer on the side that is in tremendous pain.
Flat Chest Pain
The concave side of my chest and armpit have a burning sensation.
Mastectomy Scars
My mastectomy scars are also painful. They have been diagnosed as hypertrophic scars in some places and keloid scars in others.
How do the scars feel? Like I have hot wires buried inside my chest.
Chronic Pain
Living in pain is exhausting, as I’ve learned from post mastectomy pain syndrome.
Scar Tissue Pain Years After Mastectomy?
Did you have a mastectomy? If so, let me know if you still have scar tissue pain years after your mastectomy, or if you’ve found a solution for it.
Intractable Pain
My goal is to be able to wear clothes without pain and have my arm in contact with my body without the sensation of pain. I also pray that at some point I can hug and be hugged painlessly.
Prior to one treatment below that seems to be giving me some relief, the right side of my chest, up into my armpit, felt like it was made of raw hamburger meat with sandpaper rubbing against it.
Mastectomy Recovery and Pain Treatments
I’ve looked into every type of therapy I can find. Here are the mastectomy pain treatments I’ve tried:
- Physical Therapy (5 PTs)
- Dry Needling
- Massage
- Lymphatic Drainage
- Traeger Therapy
- Feldenkrais
- Self Cupping
- Self Massage
- The BodyMind Ballwork Method
- CBD Oil/THC Oil
- Capsaicin Cream
- Diclofenac Cream
- Ice Packs
- Stretching
- Weight Lifting
- Compression Bra 24/7
- Trigger Point Injections
I have been left with a pain syndrome for which treatment has not been obvious.
Trigger Point Therapy
One promising type of therapy I received a couple of weeks ago is trigger point injections. I had two injections into my rib area and felt some initial relief from this. Thankfully it has continued to help. But I’m still living with pain.
Share Your Ideas
If you have an idea or solution to suggest, please leave a comment.
I Miss My Pain Free Life
The side of my chest that hurts is the side that had no cancer. I chose to have that breast removed in a prophylactic mastectomy to prevent myself from future recurring cancers.
This makes me very much regret having the healthy breast removed. Not because I miss having a breast there, but because I miss my old pain free life.
Mastectomy Concavity with Pain
If you’ve had a flat chest mastectomy and suffered from concavity with pain, please leave a comment and let me know if you’ve found anything that helps.
Radical Mastectomy Pain
I’m also looking to connect with women who have had radical mastectomies since this too can cause concavity and pain.
I wonder if there are special treatments for women with pain from radical mastectomies that could help me given that part of my chest wall was removed and that the word “muscle” showed up on my pathology report.
Mastectomy Pain Years Later
Please leave a comment and be in touch with your solutions.
Anne Hudson says
Elana, I am so sorry you have chronic pain. You have helped so many people with their health and this makes me so sad. I’m sure you have tried all the things I do (no nightshades, no grains, no dairy, no sugar, plus MSM, Curcumin, DLPA). I also go to a PT that specializes in Integrative Manual Therapy, and that has helped immensely. I’m sorry if I have nothing more to offer you except to send you love.
Elana says
Anne, do not be sorry! I appreciate your support. Seeing my PT tomorrow and will ask re: IMT, thank you.
Debbie says
I have no words of wisdom, though hope you find what you need to ease your pain. If positive energy can help, boat loads of positive energy are coming your way.
Elana says
Debbie, I am receiving your boat loads of positive energy, thank you.
Kate Markell says
Elena, I am so so sorry to hear of your suffering. I have so much respect, empathy, and compassion for you. I, too, have suffered chronic debilitating pain, though not in the same way. I have a few thoughts. For your scars- my c-sec clients have good nerve pain and scar healing response with salves- if you haven’t already tried this, adding a salve with comfrey, st. Johns wort, calendula… you could add a high quality CBD into it. This can help though, as you know, the deep pain from having had severed nerves require your body to heal that tissue. I know that you have spent your entire life studying health and healing. So I’m going to say it for the voices in your head that are weary- it is possible to heal this too. I started using Medical Medium information for diet and pain relief. I have healed a lot. There are many healing stories of others with breast cancer, pain or breast implant illness and recovery. You will need to look or ask for your specific situation to talk with others who are on the healing path. you can find them through the IG account or Facebook. No matter what other modalities you are using, allopathic and alternative, diet makes it possible for you the get the needed ingredients to the area that need healing and dissolve the overactive scar tissue. My love, respect and prayers for you, dear one. As humans walking together on these very difficult paths, we can hold a light for one another when we need it most.
Elana says
Kate, thank you for the salve suggestions, but sadly have not had any relief with the herbs you mention or CBD or THC or THCA salves either, very frustrating. Thank you for holding the light for me when it is so dark and the medical system has failed me.
Monique says
Hi Elana
A practitioner trained in Dr. Sarno’s work could help you with chronic pain. Doing his work with Ralph Ruiz and brain retraining with DNRS and Gupta has mostly eliminated any pain and swelling from rheumatoid arthritis and I have been able to add in some starches like potatoes, yams, sweet potatoes, cassava so eating is so much easier and I have gained a much needed 10 pounds.
Sorry to hear of your suffering. I hope this helps.
Elana says
Monique, thanks so much, love Sarno, need to check out Gupta, have heard tremendous things about him.
Hollis says
My heart goes out to you. As someone with a decades-long history of “mystery” illnesses that involve a great deal of chronic pain, I want you to know how sorry (and angered) I am about your current situation. I hope the trigger point injections continue to provide relief.
Mention was made earlier of neural rewiring. Chronic pain, no matter what the source, will inevitably lead to dysregulation of the limbic system; and healing of pain symptoms is made vastly more difficult, if not impossible, if the system is not brought back into a healthy state of balance and calm. There are now good programs that address this process and have helped many people resolve a very wide range of limbic system-related issues, including chronic pain. For me, DNRS (Dynamic Neural Restraining System), a program developed by Annie Hopper, a Canadian whose life was in shambles due to sudden severe MCS and pain issues after a “perfect storm” of events, has been instrumental in my seeing a degree of healing (which is on-going) when nothing else I’ve tried over the years has really worked. [To be continued. . . Was told my message was too long. . .]
Hollis says
[Continued. . .] If you are at all interested in exploring this, which can supplement any physical interventions you pursue, I would highly recommend your looking into it to see if this approach resonates with you. Reading some of the numerous success stories can give you an idea of what kind of issues can, sometimes almost seemingly miraculously, be vastly improved or completely resolved. In a great many cases, pain issues are involved. Here’s the main site: https://retrainingthebrain.com/
Reply Reply All Forward
Elana says
Hollis, thanks so much.
Elana says
Hollis, thank you for your comment. I am so sorry to hear that you have been in chronic pain for decades, that is awful. I love Annie’s work and DNRS.
Juliann Salinas says
Hi Elana,
I too had a double mastectomy (BRCA1+). Originally had immediate reconstruction, but within 5 years felt so sick from the implants that I had them taken out and requested an aesthetic flat closure. My closures are neither aesthetic nor flat, with my left chest wall looking like I barely survived a battle involving medieval axes.
I see you tried CBD/THC cream to no avail. I have had good luck with them when paired with DMSO, which helps in its own right (but leaves a weird taste in my mouth). I’ll take the weird taste over the pain. I have also used a Tens machine when the pain gets out of hand, which provides some temporary relief.
The worst part is being told “yeah, that [chronic pain] happens to some women post-mastectomy. Sorry about that. We don’t have anything to help.” Grrr. Sending you healing vibes from NM, and huge gratitude for your vulnerability.
Elana says
Juliann, OMG, I am so very sorry to hear about your non-aesthetic, medieval closure. Just awful. And I am sorry to hear that you too are in pain. I will look into the DMSO and the TENS machine. i was just re-reading my surgical report and it looks like some things were not in order when I was sewn up that may be causing me pain. I am continuing to investigate. I wish there was some website that let us leave ratings for the ones that do medieval closures on us. Please stop back by to keep me posted on how you’re doing.
Nancy says
Elena, I have RSD/CRPS which is pain from injured nerves. I have a doc in Albuquerque, NM who has taught me to my own block. She is an anesthesiologist.
No needles. It has been invaluable to me. She does not take insurance.
Dr Hart 505-216-0260. It may help you too. There is also a homeopathic remedy for burning pain, Arsinicum. I hope this is helpful.
Your books and recipes have been very helpful to me through the years! Wishing you the best!
Elana says
Nancy, thank you sooo much for your comment and the great recommendations.
Patricia says
Oh my goodness Elana, I had no idea! I am so very, very sorry for all you have been through and continue to go through.
Thank you for writing about this and bringing it to the attention of others as it is also something I was unaware of being a possibility.
Love and Prayers and Answers.
Elana says
Patricia, I love your comment, thank you.
Jane says
Elana, I’m sorry that you are once again having to fight for your health. You truly are a warrior woman. I have not gone through your experience but I have found Emotional Freedom Technique (EFT) also know as Tapping helpful for other conditions. There is a website called Tapping Solutions which also has an app I use daily. Dr. Dawson Church also has a website devoted to the topic. I believe it is worth looking into as tapping is body/mind focussed. Thinking of you and sending my best.
Elana says
Jane, thanks for the great suggestion.
Anna says
The most helpful modality that I’ve experienced for chronic pain – after shearing my sacrum and then being in a major car accident and injuring my shoulder – is Fascial Counterstrain. When I went to their website – https://jonesinstitute.configio.com/accountdirectory – I do see an experienced practitioner near you. While it is not the same as what you have gone through I’m amazed at the positive changes in my body.
Elana says
Anna, i will check it out for sure, thank you.