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.
Toki Birch says
Hi Elana,
I’m sorry to hear that you’re still having such an awful time of it d your pain hasn’t lessened with any of the therapies you’ve tried.
I don’t wish to overwhelm you, but you may wish to contact Dr Carolyn McMakin; she uses and teaches Frequency Specific Microcurrent (FSM) and it’s amazing for reducing pain. I use FSM with great success, but I’m based in England. Have a look at her website frequencyspecific.com and either contact her or find practitioners near you.
I wish you all the very best and hope you find a pain-free life once again.
Warmly,
Toki
Elana says
Toki, not overwhelming at all! Much appreciated, thank you.
Shaul says
Elana Shalom,
Recently I encountered the Lifeworks clinic in Clearwater, Florida (https://www.lifeworkswellnesscenter.com/).
We’ve been there and met with Dr. Minkoff.
Based on our personal experience I am sure they are the right place to heal you from your pain.
Refua Shlema,
Shaul.
Elana says
Shaul. thank you, I will check them out ❤️
Rachel says
Oh Elana. I’d not been spending as much time looking at blogs for a while, so I only just now have encountered your painful story. I am sending you so much love. I hope you will find something, anything, that can ease your pain. You’ve made so many folks’ lives better by what you’ve put into the world. I hope some of our energy can help you, even if it’s just the tiniest bit.
Elana says
Rachel, thank you for your kind words and for sending energy, I am so grateful for you.
Annette Berkowitz says
I am equally grateful for all the ways in which you have made others lives better! Sending you metta wishes for love, healing, being at ease and pain free. Wondering if you might want to try something else entirely, i.e., coming to address the pain from a different vantage point. I have a friend with chronic pain, who has taken the MBSR (Mindfulness Based Stress Reduction) 8-week series, and have come away from it, with a different way of looking inward. It is based on Jon Kabbat-Zin’s 8 week, evidence based program, which he developed while working with patients with acute chronic pain, at the University Of Massachussets Medical Center. You can research this and see if this is something that speaks to you.
Elana says
Annette, thank you for your comment and metta wishes, appreciate it.
Nancy says
I’m so sorry my first post was rejected. I am so sorry for what you are going through. I know what can help. Maybe look for my first post.
Elana says
Nancy, I received both your comments. One is on an earlier page, thanks you so much.
Vickie Frank-Fields says
Hi Elana – I have followed you on and off for years in my lifelong quest to overcome chronic fatigue. Your recipes have been a God send. I have not had a mastectomy, but have had nearly 20 major surgeries in my life stemming mostly from scoliosis and lower joints wearing out one by one and multiple botched surgeries by incompetent surgeons. One surgery resulted in killer infections. more surgeries to the joints and eventually heart surgery to repair the damage from the infections. During that time, I would take painkillers to get to sleep, wake up when they wore off and spend the day sitting in a chair crying. Later, I read that sometimes pain can create a neural path in the brain that continues to send signals even after the trauma may be improved. Also, anesthesia affects the brain in adverse ways and may take at least a year to flush out. For me I have chronic depression and anxiety. So, in addition to your severe chronic pain, which is so debilitating, the long term affects of general anesthesia and the neural paths of the pain circuit, it can be a triple whammy. I’m sure this is probably no help to you, but you are so smart and know many people in the health field who can perhaps try a different approach, since the physical therapies do not seem to be helping you.
Elana says
Vickie, your comment is a very big help to me. I’m so sorry to hear about everything you have been through and continue to go through. Thanks also for pointing out the impact of general anesthesia. My surgery was supposed to be 2-3 hours and it took over 5, so I am probably still recovering from that. Thanks for stopping by and I hope you’ll stay in touch.
Vickie Frank-Fields says
Having been a long believer in our connection to the earth and the natural vibrations in various crystals and gems and how they affect our own body’s natural vibrations, I came across the following article about tourmaline: https://healthyfocus.org/benefits-of-tourmaline/ It may be worth checking out. Again, my deep sympathy for your pain. I have special feelings for inept and/or uncaring surgeons that I would not express in print.
Elana says
Thank you Vicki!
Ann says
Immunoglobulins help small fiber neuropathy check that out. That is to burning pain SFN. Bull shit doctor. Sorry I feel your pain
Elana says
Ann, thanks for your comment, for the tip on IgG and for sharing your sentiments here!
Amanda Holden says
There are no words. It all just sucks. So, so, so much. You didn’t deserve any of this devastation and I hope that one of your readers will have some place to turn to offer hope.
I’m a mental health therapist and am reaching out to colleagues to see if any of them who specialize in chronic pain have resources for clients suffering with Post Mastectomy Pain Syndrome, specifically. I don’t know that anyone does, but I will share it here again if I get a lead.
Also, have you met with a therapist who specializes in working with clients suffering from chronic pain? I know that you’re working to find physical relief from the pain, but there are some pretty talented therapists that can help with interventions that lessen the perception of pain. And, honestly, the management of it so that someone doesn’t then suffer additionally from depression, for instance. It’s just so freaking terrible you have to consider ANY of this. If you’re interested in trying to find a therapist, I have two colleagues who have been specializing in chronic pain management (not in your state though) for almost 20 years and I’d be happy to ask them what direction to go/what to look for/what to ask/etc. if you want to try to find someone in Colorado.
Elana says
Amanda, thank you so much for your thoughtful comment! I am starting to get some relief from the trigger point injections and will look into the other modalities that you mention in your comment <3
Ann says
When your body is on fire from a surgery that was awful the last thing Elena needs is Cognitive Behavioral Therapy. Her pain sucks and she can’t CBT it away. Maybe a good attorney would be a better fit for Elena’s mental health.
Elana says
Ann, lawyers don’t take these types of cases, they are unwinnable.
Ann says
Elena,
Your voice is more powerful than anything. Keep speaking up loudly. You are brave. Love and kindness to you. Your story matters.
Ann
Elana says
Ann, thanks for your wise words and incredible support, sending love back to you.
Amanda Holden says
Yeah, I have no idea if seeing a chronic pain specialist would be helpful or what modality they use or whether they use CBT or something else. I know the research shows that chronic pain management can be helpful to varying degrees for some when physical interventions are not, (or in tandem) so thought I’d suggest it.
It was in no way meant to imply that a psychotherapeutic intervention or modality could somehow erase the physical damage and resultant pain of Elana’s botched surgery. Just that mental health support and intervention can sometimes be an important tool when we’re up against very real physical pain and suffering. It’s not effective for everyone, but as she asked for input and advice, I thought I’d put it out there in case it could provide even 1% relief from the toll this has taken. It came from a place of genuine care.
Elana says
Amanda, I think mental health support and legal support are both good strategies.
Amanda Holden says
Oh, of course. I don’t know how helpful it would be as that’s not at all my specialty, but I was trying to rack my brain for anything I could think of that might be remotely helpful as I can hear how much you’re suffering. I really hope that the trigger point injections continue to help at least to some degree. It’s just so unbelievable that this was done to you.
Elana says
Amanda, thank you for your thoughtful and caring comments! I too have heard of CBT And neural rewiring of chronic pain pathways as a modality for healing unrelenting pain. It’s a great suggestion. I don’t think that in any way you were suggesting that I gloss over or “think positive” my way out of pain. The topic of “women’s pain” in general is complex and a hot button as so many of us have not received proper attention and treatment for our pain (myself included for this overly aggressive amputation). This is a tough conversation, and you are amazing for showing back up here and sticking it out in a highly charged environment. Thanks for being brave and loving ❤️
Ann says
I didn’t mean to offend Amanda. I was just pissed at the medical profession and how they ruin a lot of life’s. They swear to the Hippocratic Oath but do not always abide by it, such as in Elana’s case. Women are still treated different when it comes to pain and our bodies. Sorry Amanda I was angry at the whole situation not your suggestion. I meant it genuinely.
Elana says
Ann, thanks for stopping back by. I’m thankful the three of us can engage in this conversation! Like I said, women’s pain (and neglect thereof) is a highly charged topic for so many of us, I know it is for me. We can all have our feelings and be angry and still connect here about all of it. Grateful for readers like you and Amanda!!! ❤️
Amanda Holden says
Love to both of you. I’m angry right along with you!
Elana says
Amanda, thank you for your love, anger, and support. I hope someday the three of us can meet ❤️
Laura says
Yes. There is a relation and it can be helped. Please feel free to reach out to me. You have tried 5 PTs, but were they truly certified in breast cancer with gentle manual skills? I can help you find someone in your area.
Elana says
Laura, thanks for your comment, 4 of them were onco-breast specialists.
Katie says
Elana reading afresh of your ongoing pain makes my stomach turn. I’m so saddened by your continual ordeal of seeking relief, fighting for a less painful life, and caring for yourself bravely. You were left with no other choice, which is plain unjust. I pray that your request will reach the very people who have answers and ideas that will offer you substantial improvements. I wish I could offer more, but my prayer for your healing, comfort and an end to your pain is earnest and real. I will also be alert to any possible stories of hope and help that I may come across. Cyber hugs!!
Elana says
Katie, thanks for your kind words and support –sending cyer hugs back to you.
Bethany says
Hi Elana, I’m so sorry you’re going through this :( I don’t have any advice or help, but just wanted to send my best wishes and hope for healing, from one Colorado lady to another xo
Elana says
Thanks so much Bethany.
teresa waldron says
I don’t see acupuncture on this list of “tries”?
Elana says
Thanks Teresa! I have tried acupuncture many times over the years without much success, so did not use it for this project, but maybe I can find someone great here in Boulder :-)
Carmen says
You need to go to a good Chinese acupuncture expert. It worked very well for me years ago. May be you should give it a second try. Also positive mind. See yourself better each day. Less pain ea day. Mind is a very powerful thing. Also spirituality. Talk to the God of your heart every day. He listings.
God Bless you and always protect you!
Elana says
Carmen, thank you for your inspiring comment.