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.
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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.
Deborah says
Dear Elana,
This made me feel such sadness and anger. Not much “care” in healthcare.
I do not have the severity of chronic pain that you are experiencing; I do have unfortunate health issues due to mold exposure and tic related diseases. I have a list of therapies to try…but financial constraints. I will get there eventually.
Two suggestions that are on my list: hyperbaric oxygen therapy (HBOT), and an IV therapy called PK Protocol that is for chronic inflammatory conditions.
The center here in Milwaukee that offers those therapies might be a starting point for research if you are interested: http://www.GoldenReyEnergy.com. Dr. Reynolds is fantastic.
Here are links to those specific therapies:
https://www.goldenreyenergy.com/iv-lounge
https://www.goldenreyenergy.com/hyperbaric
I’m so sorry this has happened and wish you true and deep healing.
x0x0x0
Elana says
Deborah, there’s not much care at all in the healthcare system –thank you for pointing out that irony. Separately, I love HBOT and have written it up here:
https://elanaspantry.com/the-complete-guide-to-hyperbaric-oxygen-therapy/
I am going to look into the PK Protocol. Thanks for your wishes for true and deep healing <3
Debbie McDonald says
I think your lingering pain could be related to your MS. Keto shows promise for MS, and related pain. Worth a try. Hoping and praying for your recovery.
Elana says
Thanks so much Debbie.
Elizabeth Yarnell says
Oh Elana! This is such a horrifying tale and it kills me to hear you are in so much pain.
In a totally different approach, have you ever heard of Dr. Joe Dispenza? He has many testimonials about resolving chronic pain and he is coming to Denver this summer. I will be attending and there are still tickets available. https://drjoedispenza.com/collections/week-long-advanced-retreats/products/denver-week-long-advanced-retreat-july-2023.
Also, I know you’ve already tried many physical therapists, but there is one in Boulder that offers something called IPA that could be new for you: https://functionalphysicaltherapyllc.com/therapists/nancy/
Sending you a big virtual (touchless) hug and lots of love.
Elana says
Elizabeth, thanks for your kind words and great suggestions, I appreciate hearing from you. Love Joe Dispenza and implemented some of his work through DNRS training. I will look into the PT, take good care.
Arlene Kohler says
Hello Elana, so very sorry you are going through this traumatic healing. It doesn’t seem right. After reading all the information, I will agree with a few others that homeopathic medicine may be of help. Practical homeopathy versus classic homeopathy may give you faster relief. Julie Black at Holistic Home Girl, MH, PHom may be able to help. She is located in Colorado Springs and does virtual appointments. You can contact her at: julie@wellhousehomeopathy.com
Also, have you tried Red Light Therapy for pain and healing? GembaRed makes a combination of Near Infrared and Red Light therapy with low EMF. This treatment may help with healing and pain.
Wishing you all the Best, Elana. God Bless you.
Elana says
Arlene, thanks for chiming in on homeopathy and love the idea of red light therapy too.
marilyn says
HI Elana, I have heard that stem cells have done so much to help people in pain and to regenerate. Dr. Harry Adler has a clinic in Park City, Utah. There is also BioXcellerator in Colombia, and there are a few in Tijuana, Mexico. Hope you get the help and relief that you need.
Elana says
Marilyn, thanks for that fantastic idea.
Louise says
Elena I am so sorry to hear you are still struggling with this. I have a few suggestions:
1) ketamine – either in clinic setting with IV (they are doing that in hospital in Oregon for pain syndromes) or nasal spray 4-6X daily. Or both.
2) Topical compounded pain creams – consider reaching out to a compounding pharmacy – you will need a prescriber, but topical pain creams avoid the digestive tract & a lot of the systemic side effects and you can combine medications with herbs (lidocaine, gabapentin, . . . )
3) Fascial Counterstrain (FCS) – if I was going to recommend one person for that it would be Kellie Barnes in Portland OR because she works with very complex health situations and I’ve seen results from her work not seen by others.
4) something to interrupt pain signaling – I’ve seen Kailo Pain patch work in some; TENS device
5) Neural Prolotherapy
I hope something works. Please don’t give up – pain is overwhelming & debilitating, but I am hopeful that your request for ideas will result in something that works well for you. Keep us posted.
Elana says
Louise, thanks for these tremendous suggestions, appreciate it.
Sally Thompson says
Dear Elana,
It’s so distressing to learn of anyone’s chronic pain. I have not used this app, but it seems to be something that might help. I definitely wish you the best of luck with your health.
curablehealth.com or the Curable app
It was rated the #1 app for pain management
Elana says
Thanks so much Sally.
Damselfly says
There were so many good (and different) ideas in the many comments that I decided to gather many of them up into one document that I could reference as I deal with my own health and pain issues.
Then I realized that a list might be helpful to others as well. I do apologize, it is a mess but I didn’t feel it was necessary to clean it up and format it (and I didn’t have time anyway.) If you would like it, email me at damselflydiary@aol.com (put “Modalities List” in the subject line) and I will send you a copy. I hope it helps someone.
Apologies to anyone who posted something I missed. Also, I didn’t include very common modalities like PT, chiropractic, acupuncture, etc. as they were already top of mind for me.
Elana, thank you for your emotionally painful post. I hope you find some relief in one or more of the suggestions. But your post has most certainly helped a lot of other people who are also suffering and out of ideas. You have already helped so many with your work and your loving legacy continues.
Elana says
Damselfly, wow, thanks for compiling everything. You are such a gem, and I appreciate your kind and loving words.
Holly says
This is a very awful story. I’m sorry you are going through this. With cancer, the cure is often worse than the disease. My mother had uterine cancer almost 20 years ago and had so many complications since. It’s really an injustice. I hope you find some relief for your pain.
Elana says
Holly, thanks for your thoughtful and kind words.
Phyllis says
Elana, I’ve been wondering how you were doing and I’m so saddened to hear about the chronic pain that you are in. I hope that you will find a solution soon that is effective for you. What came to mind is homeopathy but then I noticed that you stated that homeopathy is not working for you any more. I personally have had some success with homeopathics over the years, but I, too, have experienced them not working for me at different times. I think that it’s key to find a homeopath who is very experienced & skilled at what he/she does, as it is not only a knowledge-based field, it is also an art. If you decide to explore this field again at some point, I think that it’s worth taking the time to have a good look around to find someone who has the credentials & experience that you are looking for. Although I think that it is best to work with someone in person, but, if that’s not possible, many practitioners will work with patients remotely as well. I am about to start with a homeopath who lives and works close by, this week. (I’m in Ontario, Canada). I’d be happy to send you the link to her website if you’d like. I wish you only the best with this very trying situation that you are dealing with. Phyllis
Elana says
Thank you Phyllis, I wish that worked for me.