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.
Joan Cantu says
hello Elena
pretty radical treatment they gave you. if you know anything about radiation treatment on top of your procedure its just not good for a healthy vessel. here’s the number for Terahertz wands call them and tell them whats happening to you and go from there. 858 652 1259
Elana says
Joan, thanks for your comment. Did you have radiation treatment? I did not, thankfully.
Peggy says
Elana, my heart goes out to you. I don’t know if having a name for this would help with your research, but it sounds like allodynia. Here’s a link that helps to explain: https://www.ncbi.nlm.nih.gov/books/NBK537129/
Elana says
Peggy, thanks for that helpful link.
Ulrike says
Elana – I didn’t have your procedure but some of the symptoms for reconstructive are the same. The arm pit pain and the chest cavity pain – have your doctor write a referral for PT – the type that actually helps you release the tightness of fascia (can also be done by an fascia specific massage therapist. (Not cupping) and also a sport Chiropractor. These two entities have brought me around with STEM, fascia release and deep muscle massage – but it has to be done in the correct order. It is imperative that you manipulate/massage your scars every single day! The chest muscles connect to armpit and then shoulder – if you are not careful as time goes on you will wind up with a frozen shoulder on top of your chest cavity pain. without referral. A really good PT will understand that after your type of surgery you should have been referred to them for all the above. You basically have to untrained your muscle because they have been in a protective mode for so long. I won’t sugarcoat it – the first time hurts and may cause some bruising however the relief was worth it. If you have any questions – please reach out.
Elana says
Ulrike, I am battling a bit of frozen shoulder right now, some of the muscles in it are a bit challenging to get firing. Thanks for the tips and also discussing the order in which to do them.
Rhonda says
I have appreciated your vibrant and positive outlook throughout the years, in spite of your health problems. It breaks my heart to know that you are in this constant, horrible pain with seemingly no solutions in sight. I’m so very sorry. I have nothing to offer you but my thoughts and prayers. However, one modality you might explore is PEMF, which seems to work for a variety of painful issues. My husband has this at his chiropractic office and has had good success treating some longstanding issues in some patients. I recently had only two treatments and am shocked at how the issue has improved significantly.
Elana says
Rhonda, that is a wonderful idea, thanks for suggesting and I will look into.
Marcia Nueske says
Dear Elana,
My heart goes out to you.
I would look into Block Therapy created by Deanna Hansen at blocktherapy.com. I have found her methods much more effective than any physical therapy or accupuncture.
Also you have had an extreme amout of trauma that you may be holding in your body. I would suggest trying the TRE method of trauma release. Go to https://www.trecourse.com/p/tre-self-guided-learning-course. It is a free on line course that you can do at home. It has helped thousands of people release trauma.
Also I would suggest checking out Dr. Judith Swack, who will help you release all the emotional and energy blockages you may be holding from going through so much suffering. Her web site is hblu.org. She offers a free 15 minute consultation.
I am currently using all these three modalities in my life, and have found them life changing.
Also I would suggest going on Youtube and watching some talks by Bruce Lipton.
You are a beautiful, strong, wonderful person, who is going through deep challenges. I know you are going to get better. I am praying for you.
Sending love and light,
Marcia
Elana says
Marcia, thank you for your amazing ideas, kind words, and prayers. You are so thoughtful. I am grateful for you.
Eleanor says
Elana, I have chronic pain issues as well. Some things that have helped a lot with the neurological pain aspect is TENS and massage the area. I don’t mean deep tissue. Just a light touch that causes you pleasure. Either ice or heat helps too. For me it’s heat. Baths too. Just something to change the sensation. If you want a natural analgesic, I find Lakota helps me. And I know it’s great to feel active, but first the pain needs to come down. At least it did for me. So watch your spoons. I made some diet changes as well. But from what you’ve said before, I doubt that’s your issue. Though you could see if you have any food intolerances? It may be this is your new normal, and I’m sorry if it is. Good luck!
Elana says
Eleanor, thanks for your super helpful comment. I have found that when I am taking breaks from stretching and strength work I quickly lose range of motion, it is a terrible balance and choice –to have movement or be in pain. I love icing and will try heat too, and your other suggestions, thanks again.
Susan Schwartz says
Dear Elena, I have blessed you every time I use one of your recipes and have recommended your books to everyone.
Learning of this painful journey is a shock. I will add you to my prayers.
Please look into Jin Shin Jyutsu Spirit Mind Body (JSJSMB.com). It is does not manipulate soft tissue and also has self help tools. It causes no harm only can help. We use it without awareness. Please reach out if you want. I know so many people it has helped. I wish you lived near me. Holding you in my prayers. Pain disturbs our joy and happiness. ❤️
Elana says
Susan, thank you for your blessings, I am very grateful. I love Jin Shin, I took a training with one of Mary’s main students a decade ago here in Boulder. Thanks for the reminder.
Christine says
Dear Elana, firstly I’m just so sorry to hear about what you are enduring. Your content (and books) have been a literal Godsend to me over many years and I want to thank you from the bottom of my heart for the hours you must spend creating what you give us here!
Please research Serrapeptase (I have a high dose 250 000 iu) one I use. For scar tissue.
And then, just a thought, for the healing / pain- have you researched the use of a hyperbaric chamber? I guess you have, but no harm in mentioning in case, and I’m sorry if that’s obvious. I haven’t read all the comments so maybe it’s been mentioned a thousand times already
I wish so much that your pain will end and for endurance through it , and thank you again for all you do for this world!
Elana says
Christine, first, thank you for your kind words, they mean so much to me. I am going to see if I can get a topical formulation of Serrapeptase. Thanks for the suggestion.
Katie says
Hi Elana! I have not yet tried this as I just heard about it yesterday while researching pain relief from my gallbladder removal, but you might want to try castor oil packs. After asking my doctor about the on and off pain I’ve been experiencing for the past 3 years and each time being told by different doctors that it was ‘phantom’ pain, I started doing my own research. As I mentioned above, I just learned about the benefits of castor oil yesterday, but plan on ordering some today, as it seems like even if they don’t work, they’re inexpensive and won’t do any harm.
This is the podcast I listened to.
https://open.spotify.com/episode/1ophfziLGTw22djxIKnMXv?si=TniLO2gvQ9i_MyZfMZhCDg
If you try them, please let me know what you think.
Elana says
Katie, I love castor oil packs, what a great idea. Are you using them on your liver region, or directly on the wound?
Katie says
I just ordered them and haven’t received them yet, but I plan to use them on my right side, over my rib cage where the pain is. I found through my own research that even after having your gallbladder removed, you can still get ‘gallbladder sludge’. I have an ultrasound scheduled for tomorrow, which will confirm whether or not I do and if I do, I’m hoping the castor oil packs and bile salts will help.
Elana says
Katie, I hope you’ll keep me posted on your US, take care.
Katherine Simonetti says
Elana, I’ve read about success with pain after amputation using a method involving mirrors (tricking your brain into believing the amputated body part is still there). It was most recently mentioned in an article about the rise in chronic pain, in the New York Times this past week. I don’t have more information about it, but I think it’s called mirror therapy, and might be worth trying. Best wishes.
Elana says
Katherine, thanks for the great reminder, I’ve seen a video using that technique and it’s amazing.