Coping with Pain after Breast Cancer Surgery

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A patient does strength-training exercises as a physical therapist looks on.

Physical therapist Sharlynn Tuohy works with a patient to rebuild muscle strength.

After undergoing breast cancer surgery, many women experience lasting pain or discomfort in the breast or chest area. Called postmastectomy reconstruction syndrome (PMRS), this condition is a reality for up to half of women who have breast cancer surgery.

“We use the term postmastectomy reconstruction syndrome to describe specific symptoms that some women may experience after treatment for breast cancer,” explains Memorial Sloan Kettering physiatrist Katarzyna Ibanez.

Physiatrists are doctors who specialize in rehabilitation medicine. MSK has a team of rehab specialists dedicated to caring for people with cancer.

Although the name implies that only women who have undergone mastectomy (surgical removal of the breast and underlying tissue) experience PMRS, the symptoms may be caused by a number of treatments for breast cancer: surgery, lymph node biopsy, reconstruction, chemotherapy, or radiation.

“Whatever the cause, treatment and management are essential so women can get back to their lives in the most comfortable way possible,” Dr. Ibanez says.

A Range of Symptoms

Women with PMRS may experience weakness, tightness, or pain in the shoulder; muscle loss in the chest wall; or muscle spasms and pain. Some women say they have trouble taking a deep breath, comparing the sensation to wearing an “iron bra,” Dr. Ibanez explains.

Other signs include:

  • swelling of the chest wall
  • sensitivity to touch on the chest wall or armpit
  • restricted range of motion
  • axillary web syndrome (also called cording, in which ropelike tissue structures form under the skin of the arms)
  • breast tightness

These symptoms, which can range from mildly annoying to severely restricting, might not be present right after surgery but can pop up years later.

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Seeking the Right Diagnosis

If you have complaints of pain or discomfort after breast cancer surgery, you may find that it can be hard to get a diagnosis. The surgeon has removed the cancer and the oncologist has done his or her job, but how does the leftover pain get diagnosed and treated?

It's important that women with PMRS understand that this is a real syndrome.
Katarzyna Ibanez Physiatrist

If you think you may have PMRS, make an appointment with a physiatrist in your area, Dr. Ibanez advises. He or she will need to take a detailed medical and functional history. A comprehensive physical exam, which includes seeing how well you can move, may help your doctor determine if there are underlying problems with your nerves, muscles, or other tissues.

Sometimes, blood tests or an imaging test such as an MRI may be needed. A test called an electromyography can help to see if there is abnormal muscle or nerve function in the area.

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Finding the Solution

Treatment for PMRS is as varied as its symptoms are, which means there is no specific intervention that will work for all women.

Rehabilitative treatments may include medication, occupational and physical therapy, and lymphedema therapy.

The mainstay of treatment is a highly specialized physical therapy that reeducates the affected muscles and nerves, improves posture and body awareness, stretches the chest wall muscles, strengthens other muscles, and restores joint and soft tissue mobility.

Pain medications may be effective for some women. Others find relief from botulinum toxin (Botox®) or other injections that may reduce or eliminate painful spasms.

In determining a treatment plan for her patients, Dr. Ibanez says, it’s important for her to know more about their lives. Your doctor should be asking questions like:

  • What kind of activities, hobbies, and sports do you participate in?
  • What type of job do you do?
  • What have you found the most disabling?
  • What activities do you most want to return to, and is there a timeframe or any other factors to keep in mind?

Other factors to take into account are how long the symptoms have been present and what treatments, if any, have already been tried.

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Getting Back to Normal

Many women come to her office seeking help, Dr. Ibanez says, and are relieved to hear that they aren’t alone — and that there is treatment. “It’s important that women with PMRS understand that this is a real syndrome,” she stresses. “There is a physiology to it. There is nerve and muscle damage, atrophy, and a change in biomechanics.”

Anesthesiologist Amitabh Gulati
Neuromodulation Center for Cancer Pain
We are the only center in the tri-state region dedicated exclusively to alleviating pain caused by cancer and its treatments. Learn how our experts we can help.
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With a comprehensive program that can last six, eight, or 12 weeks, followed by a lifelong exercise program to maintain the gains, most women will feel much better. “We can never say 100 percent, but I would say 80 to 90 percent of women see great improvements,” says Dr. Ibanez. She adds that it’s important to continue the exercises after the completion of therapy, because symptoms may return or worsen.

“My patients say that life isn’t the same as before cancer treatment, but it’s better than when they first came to see me,” she notes. “They can participate in activities like yoga and swimming, and they can lift their child or grandchild.”

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Comments

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Thank you everyone for speaking up & out in regard to our experiences. I am so happy I found this site and appreciate each & every one of your posts.
I had a Double Mastectomy, 12/4/29017, skin sparing, no Lymph node involvement. Only additional treatment needed was reconstruction. Tissue expanders in place during Mastectomy. Weekly increased until end of 02/2018. My skin was "very fine" I was told hence one breast looked purple & even an expander flipped!!
Permanent Silicone Implants 3/4/18 (34C which I had always been) . Right one has "sagged", top part of breast is loose skin; scars were on same level initially, now very different (which is ok with me) . What is Not ok with me besides of the physical appearance (not looking for perfection just to like what I see) - the Pain. Both side at the outermost quadrant, where i can feel my ribs is sharp, tender raw pain, which I also feel under my breasts. I had the same pain when I had the Expanders & was told that was the cause. The amount of anti inflammatories I was told to take, caused an Ulcer! I also get a very heavy feeling in the Left Breast. The original plastic surgeon suggested I have Lipo to "inflate" the right side. I am in between Plastic Surgeons now & released from Breast Surgeon care. To date, all treatment has been done at Sloan. I am so Sore i can barely rest my arms along my chest. Any comments, thoughts (especially from Sloan) would be greatly appreciated. Oh also the right one is bluish in color, again I was told this and the sagging is due to "thin skin & not forming scar tissue". I have had multiple major operations and never told that before.
Thank you .

I wonder why the lady from the cancer society that came to talk to me before my surgery didn’t tell me about the possibility of nerve damage ?should of been one of the things you go over right?

Rhonda, thank you for reaching out. If you think you are experiencing problems from nerve damage due to treatment, we recommend you ask your doctor for a referral to a physiatrist. This is medical doctor who treats a variety of issues related to problems with pain and movement. You also may want to seek out an expert at a National Cancer Institute-designated cancer center that is close to where you live. You can find a list here: https://www.cancer.gov/research/nci-role/cancer-centers

I am so grateful to come across this website. I had my bilateral mastectomy in October 2017. Then a second surgery in November 2017 because they didn't get it all and had to take more lymph nodes at the same time. Then I had the tissue expanders and the "gummy bears" were placed in March 2018. I hate how uncomfortable I am - constantly. The tightness and muscle spasms - I saw above some called it the Iron Bra - that fits it to a tee! I always tell the doctor it feels like I have a sports bra on that if 4 sizes too small. They all just smile at me. The oncologist told me "this is your new life." :( I am still sleeping in the recliner at night because I still struggle to get comfortable. I went through physical therapy and I continue to do the exercises they showed me how to do. But their focus was more on managing any swelling in my arm - which I haven't ever noticed. I too, will print this article to take with me to my next doctor appointment. Thank you everyone for being brave and for sharing. Stay strong in your battles.

This is the most useful information I have read post bilateral mastectomy. I'm wondering why none of my MSKCC md's raised this with me.

Dear Lisa, we’re sorry to hear that you felt you didn’t receive the information you needed from your doctors. MSK’s Patient Representatives can help to address your concerns regarding your care. If you would like to discuss this further with them, please contact them at 212-639-7202. Thank you for your comment, and best wishes to you.

I had a bilateral mastectomy in December of 2011. After about 6 months the pain in my chest began. I did chemo and in 2014 had a recurrence and had 35 rounds of radiation, which almost killed me. I suffer from all of the above, pain, burning sharp pain in my chest that sometimes I fell like my chest is going to explode. This has been going on since March of 2012. After doing quite a bit of research I have learned that during surgery a nerve was damaged. I have been to pain management, physical therapy, taken pain pills, which I don't do well with and also pain patches. The pain patches work the best but are so expensive, I can't afford them. for 60 pain patches it was $400.00 and I would use two per day. Anyway, sometimes I feel like I will go mad, but keep going on. I know it will never go away. I can't even wear a bra with light weight prosthetis (sp) because it causes so much pain in my chest that it is unbearable. Maybe one day the pain patches will get affordable.

On December 28, 2017, I had bilateral mastectomy with tissue expanders placed during the surgery to begin breast reconstruction. I was expanded every few weeks until reaching the size that I felt comfortable with. The plastic surgeon recommended waiting several months for everything to settle before the second surgery to place the breast implants.
Over the summer I developed itching deep in both my breasts and decided to have the expanders removed and go flat with no implants. Part of the reason for going flat was information that I read explaining that implants frequently need to be replaced in 8 - 10 years along with having MRI's after 3 years and then every 2 years. I am 63 years old and wish that I had asked more questions prior to my initial surgery to learn that implants are not permanent devices.
On August 24, 2018 I had the expanders removed and am pleased to report that I had very little pain after the surgery. Now, however, my chest is concave on the side that did not have the cancer. Do you have any recommendations where to turn for help or will a prosthesis help me look normal again?

Dear Patty, we’re sorry to hear about all that you’ve been through, but happy to hear that you no longer have pain. We recommend that you discuss your concerns about the current appearance of your chest with your surgeon. Thank you for your comments, and best wishes to you.

I just stumbled across your web site.. I had breast cancer (dcis) in 2009, mastectomy left breast with immediate implant. Had to have it removed because of fluid problem, 2 years later saw a surgeon who suggested Latissimus flap surgery which I should never have had done. My life has been chronic pain ever since. Swelling, cramping, loss of motion, all the symptoms I have just been reading, I am seeing a shoulder dr. today. He has given me shots for pain which help but I don't think that is the problem, I had some shortness of breath and cardio dr, had me wear heart monitor for 5 weeks. No issues. I think it is all the cancer related problems. Any suggestions would be appreciated. I live in CT

Dear Marilyn, we’re sorry to hear that you’ve been having these problems. We recommend that you ask your doctor for a referral to a physical or occupational therapist or a physiatrist. This is a doctor who specializes in pain and mobility issues. Thank you for your comment, and best wishes to you.

I had right mastectomy with diep flap reconstruction at MSK in June 2018. The right side of my chest under the breast still feels raw and tight. It hurts when I turn in bed. This extends around my right side under my arm, which feels like a football. Iron bra is a good description. What amazes me is the lack of information from the surgeons when I describe these symptoms. Also no one ever told me anything about this before surgery. It almost feels like it is being swept under the rug. Drs say 'give it time.' But none of them ever mentioned PMPS. The abdomen also swells up so much during the day - I wasn't aware that this would happen. I just wish it was spoken about more openly so that we don't feel like we're the only one left like this. Is it nerve pain? Is it muscular? Can anyone tell us what is the cause and can it be fixed?

Dear Bernadine, we’re so sorry to hear you’re going through this. We recommend that you speak with your MSK surgeon and let him or her know that you are still not feeling better three months after your surgery. Your surgeon’s office should also be able to refer you to a therapist who can help you work with these issues. Thank you for your comment and best wishes to you.

How many women complain of breast pain years after surgery?? So far have not seen any good reports. I went into doc for small breast change and now fear for my life. When does the pain end?

Dear Sue, we’re sorry to hear you’re having these issues. We recommend you discuss this with your surgeon. Thank you for your comment and best wishes to you.

hello, It has been almost 8 months since my BMX w/immediate reconstruction. I am in as much pain as I was the first month post op. My surgeons have said it could take a year or more. My chest is extreamley sore, when showering I feel like the water is millions of pellets hitting massively bruised chest, although I am not visibly bruised. The reconstruction LOOKS great but I feel terrible and I still have frozen shoulders in which I cant lift my arms over my head. How long and should I be concerned that its taken THIS long? My DX was DCIS stage 0 but the pain is an 7-8 at night trying to sleep and about 2-4 in day. My other concern is however surgeons were not is I do have a Positive ANA and I wonder if my body is not accepting the implants, I just do not know what to do. I take pain well usually and have given birth to 3 children without meds of any kind. I hope I can get answers soon I do not see doctors again until January. Thank you so much, Kathy

Dear Kathy, we’re sorry to hear that you’re going through this. We recommend that you speak to your doctor about a referral to a pain specialist. Thank you for your comment, and best wishes to you.

I am so thankful to have stumbled onto this site. Had left mastectomy May 2015, and I am still having pain and tightness in my chest right at the sternum. I even have to hold my chest when I cough or sneeze. The only relief I have had was a from prednisone taken for something else, but three days after completing that course sew of treatment the pain returned. I don’t want to be on long term prednisone because of the side affects. I have burning, electrical jolts that pass throughout the left side of my body at will. No doctor has given me any assistance in this area but my physical therapist did help when I was able to go but that course of treatment doesn’t last forever either. Thanks for your informative website.

I had a bi-lateral mastectomy 12-2017 with immediate reconstruction. After the expanders were replaced with implants the right side healed but the left did not. Eventually, my left chest broke open and the implant had to be removed. I am so happy to have found this site. My primary care physician doesn't seem to have any idea how to help with the iron bra syndrome. In addition, I have began having muscle spasms on both sides as well as pain in my right shoulder. I am going to have the implant on the right side removed this spring. I cannot tell you how much it has helped just knowing my experience is not isolated. I agree doctors should be more forthcoming with information regarding what could happen and often does, post mastectomy. Thank you.

Dear Regina, we’re sorry to hear about everything you’ve been through, but glad to hear that you found our website helpful. Thank you for your comment and best wishes to you.

Interesting information. I had axillary node dissection, lumpectomy, radiation in 2001 (18 years ago). The surgeon took huge amounts of tissue from my underarm in 2001 and I had so much nerve pain I had to hold my arm at a 45 degree angle away from my body otherwise I had the feeling that a double bladed sword was under my arm. That went away eventually (months). Lymphedema was treated with manual lymph drainage. I have ALWAYS had a sharp 'electric' pain when I lean a certain way, I.e. if I'm in bed and lean down to get something on the lower shelf of the nightstand. The surgeon said I would always have that. I had a recurrence and mastectomy in 2009 (10 years ago) and a prophylactic mastectomy on the other side as well as DIEP flap reconstruction in 2014 (5 years ago). Flash forward to now (2019) and I have a constant pain in the outside of my 'breast' (mound). I obviously have some scar tissue but man! this is painful AND scary! My GP says there's no pont in a mammagram because I don't have any breast tissue and says there's no point in a CT scan or MRI because it'll just show the scar tissue. I know it IS probably nerve pain but 18 years later?? I guess I'll try and find a massage therapist that can do SOMETHING.

Dear Siobhan, we’re sorry to hear about all that you’ve been through. Thank you for sharing your experiences. Best wishes to you.

Is it possible to have this syndrome if you don't have reconstruction. I had double mastectomy 1/4/19 without reconstruction. I have been doing physical therapy and I am out of appointments that my insurance will cover. The muscle spasms are debilitating. I am so glad to make it to summer break from my job but I want to be able to do normal activities.

Dear Amy,

We are sorry to hear that you are experiencing these symptoms.

Yes, it’s possible to have post-mastectomy pain, spasms, tightness and/or shoulder range of motion limitations even without reconstruction surgery.

You mentioned that you have done physical therapy. We also recommend that you ask your surgeon for a referral to someone who is a specialist in dealing with this type of pain. If he or she doesn’t know of anyone, you may want to seek out an expert at a National Cancer Institute-designated cancer center that is close to where you live. You can find a list here: https://www.cancer.gov/research/nci-role/cancer-centers

Thank you for your comment and best wishes to you.

I had a unilateral mastectomy with Latissimus flap reconstruction on the left side on 6/19/19. Recovery has gone well. Everything as expected. Off all prescriptions. Have been walking. All was good until 2 nights ago. Excruciating back spasms on the Right side only at night. Cannot find a comfortable position to sleep. I go from bed to recliner all night. Only position that makes the spasms go away is standing on walking. Unfortunately, I haven't figured out how to sleep standing up. I do see the reconstructive surgeon on Tuesday. I wondered if there was an helpful tip before the appointment. I will be having PT after my final drain is out this week. Any help would be appreciated.

Dear Kathy, we’re very sorry to hear about what you’re going through. We recommend that you discuss this with your medical team. Thank you for your comment and best wishes to you.