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.
Kathy says
Kathy OBrien
10:33 PM (12 minutes ago)
to Elana’s
I wish I had a suggestion. I had a single mastectomy 3 years ago. After a year I went back to the surgeon asking about the pain in my chest (constant). He felt around and told me everything was fine, no problem seen. I felt crazy. Even to this day it is a constant irritation. I seriously thought about seeking out the dry needle treatment. Guess I can thank you for letting me know it did not work.
I can tell you that I have an issue with keloid scarring. I knew it would happen based on other major cuts that I have had. I have used scar cream (it is actually a stick – about $30 for a small stick) since the stitches were removed and the skin healed. I do recommend that you use it. The scars which go all the way across my left chest and my under arm are fading.
I pray that someone out there has a suggestion. It would be great to go to bed at night and not have to hold the covers from touching the left side of my chest. And I hope you can find some relief. At this point mine is a constant irritant, generally not in the full pain category.
Best of luck to you.
Elana says
Kathy, it is just the most invalidating thing when we go to a physician and they tell us everything is fine when we know it’s not. Ridiculous. I am having a little bit of luck doing soft cupping, but no substantial, continued relief. Let’s stay in touch.
Deanna Bishop says
My husband had a bad knee replacement several yrs back. It was bad from the moment he left the operating room. His biggest regret is not suing the doctor to help pay for medical treatments for the pain and suffering he has had to endure.
The doctor’s apology doesn’t pay for future pain management options.
So if you haven’t sued the doctor already give it strong consideration.
Elana says
Deanna, thank you so much for this valuable advice.
Kathy Foulk says
Elana, I just want to say I am so sorry this is happening to you. Living in pain of any kind is so debilitating. Your recipes and information have helped my family in so many ways. Thank you. May you soon find the relief you are seeking.
Elana says
Kathy, thanks for your kind words, they mean lot to me.
Elana says
Margo, thanks for sharing all of your fantastic ideas with me, really appreciate it and sorry to hear about all you’ve been through.
Diedra says
Cold immersion helps me with my chronic nerve pain. It helps to dampen the pain signals and it also helps clear my mind and body from all the stressful feelings from having chronic pain. I try to do it every day and it helps me to stay ahead of it.
Chronic pain sucks and I’m sorry to hear this was your outcome. I wish you peace and spaciousness around it. Just keep making space in your mind and spirit, it will help you to love alongside the pain and not feel consumed by it.
I have also had success with trigger point therapy injections for many things. I had success with Botox for multi-year chronic pain in my back and down my legs. Maybe it could help yours too?
I had a mastectomy in October 2022 and had a relatively good outcome, thank goodness.
Elana says
Diedra, it sounds like you have been through a lot. Thanks for sharing your resilience strategies with me, appreciate it.
Jean says
Hi Elana,
I hear you. Pain sucks. It takes over. I have various areas of pain, all got worse after a 3.5 hour surgery to remove endometriosis plus a hysterectomy.
Have you seen Chris LaRosa, acupuncturist. He uses moxa. My left hand fingers started falling asleep at night and at times we’re extremely painful. Scary. Previous to seeing Chris I couldn’t sleep on my side, even sleeping on my right side would cause the numbness and pain. It woke me up. It’s now gone 99.99%. And I sleep on either side every night. I had 10 sessions with Chris for $1000. I have other weird pains and numbness in my left foot and ankle and pelvic pain issues, shoulder and back. When finances allow, I’ll go back to Chris. In February, I had an interesting and helpful visit with Dr. Fanestil at the Mind Body Center in Boulder. I adore him. Great manner.
Warmly,
Jean
https://chrislarosaacupuncture.com/
https://www.bch.org/find-a-physician/bradley-d-fanestil-md/
Great book on pain: The Way Out, by Alan Gordon. Written by someone who used pain reprocessing on his back pain and is now many years pain free.
“Pain Reprocessing Therapy (PRT), a mind-body protocol that eliminated his own chronic pain and has transformed the lives of thousands of his patients.”
Elana says
Jean, thank you for your valuable insights and suggestions. I really appreciate them.
Linda Solomon says
Dear Elana,
I am saddened by the fact that you continue to have pain after such a serious surgical procedure. It’s terrible that you continue to endure what you are. Just like so many doctors, they haven’t a solution for you. I’m wondering if yours
even cares? If I was you I’d contact a homeopathic professional. I used to treat with a woman by the name of Becky Stevens here in MI for MS. She’d helped me a lot at the time and she does Holistic work. This is her email address bshallc@hotmail.com
perhaps she could help you? http://beckystevensholisticalternatives.com/
Phone
586.294.6540
Address
St. Clair Shores, MI
Linda
This is my suggestion to you because she may be able to ascertain what’s causing the problem & prescribe something for you to help alleviate your discomfort. Good Luck with this Elana. I hope whether you work with Becky or not that your pain is relieved somehow. Take care, Linda
Elana says
Linda, you are so thoughtful, thank you so much for the referral.
Samantha says
Hello Elana,
I don’t know if you’ve ever heard of this cream, this would definitely just be a symptom treatment, and not a cure of any kind, but I have found relief for muscular/nerve pain with this cream. It doesn’t work as well for total pain numbing like some drugs do, but it does seem to help, and won’t harm you in any way. They have tablets too, which I’ve also used, but somehow the cream seems a bit more direct: https://a.co/d/d0Y0bZS
I wish you the best of luck, chronic pain is a tough one – my sister was in a bad car accident 30 years ago, and she still has chronic pain. She has tried PRP injections with some success, but I don’t know if that would be appropriate for your particular situation or not?
Elana says
Samantha, thank you for your kind and thoughtful words and for the trauma cream suggestion, really appreciate it.
Brenda Gaines says
Dear Elana- I have all your books and use them every day, and also recommend them to others. My pain problem is not as extreme as yours. I was in the hospital 3 times for a heart procedure, a nurse nicked a nerve, I have tricky veins. The pain and burning in my hand, wrist and arm was terrible. I went to Urgent care once when I couldn’t stand it, they gave me gabapentin, I took for a week and didn’t seem to help. It’s been 2 and 1/2 years, and the pain has lessened, but hasn’t gone away completely. I think adding magnesium to my supplements has helped but it may just be time that is helping to heal the small bit of nerve damage. I hope you can get relief soon. Brenda
Elana says
Brenda, that is terrible, I’m so sorry.
ELIZABETH PEARCE says
Because my husband was a field service engineer for a large healthcare company and his forte was mammography, I was spared an unnecessary exploratory procedure by a well recommended cancer surgeon that I consulted in Colorado Springs, CO. Plus the fact that she really didn’t like him and was rather was afraid of what he knew. He understood the radiologist’s report. Baruch Hashem, my husband was with me for this visit.
Elena, I am so sorry that you are suffering. I will pray for a complete healing for you.
Elana says
Elizabeth, thank you so very much for your prayers.