Coping with Pain after Breast Cancer Surgery

By Marijke Vroomen Durning,

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

Nearly half of all women experience pain or physical limitations after breast cancer surgery, a condition known as postmastectomy reconstruction syndrome, or PMRS. However, many women find relief with treatments that include medication, physical or occupational therapy, and lymphedema therapy.

Highlights
  • PMRS is a common side effect of surgery and other treatments for breast cancer.
  • A physiatrist can best diagnose the condition and recommend treatment.
  • Weakness, tightness, pain, or muscle loss in the chest wall are common signs.
  • Treatment for PMRS varies according to symptoms.

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
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.”

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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

For those dealing with breast cancer surgery stay strong for your family, friends, loved ones, and yourself!

Patients can contact a certified Cancer Exercise Specialist thru the Cancer Exercise Training Institute's website, and/or a massage therapist who does manual lymphatic drainage by going to the Society for Oncology Massage website s4om.org.

Its been 2 years since my double mastectomy. I had gone back to work thinking it will get better but im finding it harder to deal with the pain and swollen fingers. I am now experiencing muscle spasms. I am disapointted with my primary Dr. for not being able to connect with my real pain. I have worked for the same department for over 25 years and now im unable to do the job. Its heart breaking not being able to find the Dr to help me.

Abby, we're sorry to hear that you're going through this. We recommend that you ask your surgeon or your primary care doctor to refer to to a physiatrist, who may be able to help you with some of the side effects you're experiencing. Physiatrists are medical doctors who specialize in pain and mobility issues related to surgery or injury. Best wishes to you.

HER2+ IDC stage IIB
I had 5 rounds of chemo, refused #6 due to debilitating side effects. Followed by right masectomy involving 2 lymph nodes under my arm with expander. 6 weeks later expander removal and more tissue due to infection. Next came radiation, had my 33rd and final treatment last week, the last 5 being boosts. I have a muscle under my breast that is inflamed and spasms if I use it. It is so very painful I have a hard time catching a breath and lasts long enough to make me break I to a sweat. There is another muscle below that muscle that the radiation didn't hit that does the same thing. I also have other body spasms that are new to me and very painful and frequent. Could a psysiatrist help this and is this a common side effect of my treatments?

We are sorry to hear about the painful side effects you have experienced. If you would like to make an appointment to consult with one of the physiatrists at MSK's Sillerman Rehabilitation Center, please call 646-888-1900. To learn more about the services they provide, please visit https://www.mskcc.org/locations/sillerman-rehabilitation. Thank you for reaching out to us.

Oh my gosh. It's been two years since my double mastectomy and this is a perfect description of my daily struggle. Pain, tightness, spasms, restricted range of motion. The 'iron bra' syndrome exactly. I've discussed with all 3 of my team; breast surgeon, reconstructive surgeon and oncologist. I've been to physical therapy, sports chiro therapy and massage therapy. The last one is the most helpful in at least unraveling the knots I get from pain and spasms. I will print this and show my doctor next time I go. There has to be some hope.

Dear Cynthia, we are sorry to hear that you've been experiencing the symptoms you described. We hope this information is a helpful resource when you discuss the next steps in your care plan with your doctor.

I just read the IRON BRA wow great description. I thought I was crazy. I am also having trouble getting help with my situation. I live in Indianapolis IN do you know of anyone that can help me in this area? I would appreciate any help!

Kelley, we're sorry to hear that you're experiencing this. We recommend that you ask your doctors for a referral to a physical or occupational therapist who has experience in working with breast cancer patients. Thank you for your comment.

Ten weeks since my bilateral mastectomy and I am still so sore. Luckily I am seeing a PT who has a massage therapist in his practice. Cannot bear the tightness and burning. Hope they can help. This was my idea not my surgeon's or any of her staff. Disappointed that they did not recommend such an important followup. Maybe I am expecting too much too soon but I want to get back to my active self.

Dear Janet, we are sorry to hear that you are still in pain. Everyone recovers differently from surgery but it's important to get the support you need to address your pain. We hope your physical therapist can help with this. Thank you for sharing your thoughts on our blog.

Almost a year post double mastectomy reconstruction 3/14/16. Great to read I am not crazy having this pain and limitations. Range of motion is good - had PT at my suggestion. I have the spasms if I lift things or reach. Definitely showing to my Reconstruction doc, she offered to do surgery again... She Didn't understand why I was still having pain and limitations!!!! Now I know. Thanks

Dear Neva, we are sorry to hear that you are experiencing pain and limited range of motion from your surgery. We are glad to know this information has been helpful. Thank you for sharing your thoughts and experience on our blog.

I had a bilateral mastectomy just one month ago with immediate reconstruction via the use of a prepectoral implant. Overall, I feel great and I am back to work (desk job). Unfortunately, at random times, a wave of tightness takes over my breast area and feels very much like an "iron bra". It is so incredibly uncomfortable. My real bra will fit normal and then when the wave of tightness hits - it feels like my breasts are going to bust out of the bra. I worried that it was lymphedema of the breast but my breast surgeon told me that it was next to impossible because I only had a sentinel node removed. I asked about physical therapy and both breast and plastic surgeon said I did not need it because of the prepectoral reconstruction. I feel like no one understands what I am feeling. I have taught myself how to calm it down with some stretches and lymphatic massage once it hits. That seems to help. I wish there were more resources out there to help us with this issue. I also feel this tightness first thing in the morning when I get out of bed.

Dear Lauren, we're very sorry to hear that you're experiencing this. We recommend that you continue to seek out a physical therapist who may be able to help you with these problems. You may also find it beneficial to speak with other women who have gone through this. Our online support group, Connections, helps cancer patients, survivors, and caregivers to connect and support each other by offering advice and encouragement. You can learn more by going to https://www.mskcc.org/experience/patient-support/counseling/groups/conn… It is open to anyone and not just people who were treated at MSK. Thank you for your comment, and best wishes to you.

I have had a left breast semi-masectomy in October 2013 and am daily experiencing tightness in my breast. My oncologist says it is the result of the muscle having had to go deep in to remove the cancer. I am active and swim and do yoga 3 -4 times a week but I am always experiencing discomfort. I am glad to have found this site; thank you. I will ask my general practitioner about a referral for further care. I am in the Princeton area, NJ.

Dear Terry, we're sorry to hear that you're experiencing these side effects, but glad to hear that you found this information helpful. Thank you for your comment, and best wishes to you.

I had mastectomy on right breast May 2009! In Aug 2012 I had left breast mastectomy and expanders put in. Then implants. I've pain in my left side back shoulder blade area. Some days I don't. I had mri 2 years ago and they said mild case of arthritis. Now it really feels bad and I fell it from front to back! I don't know if its my lungs! I don't have problems with the right one! I don't know what Doctor I should see!

Dear Lori, we're sorry to hear that you're experiencing these side effects. We recommend that you ask your doctor for a referral to a physiatrist. This is a doctor who specializes in rehabilitation after injury or surgery and helps with movement, weakness, and pain problems. Thank you for your comment, and best wishes to you.

I had my Bi-lateral double mastectomy on 6-1-16 and reconstruction on 9-17-16. Then had to do OT from October- December because it felt like my muscles locked up after my 1st day back to work. Iron Bra is a great description. I still have scar tissue and fluid. My chest constantly aches. I think my chest can't get used to my pec muscle being in front of my breasts. How much longer until they start feeling normal or will they ever? #happycancergone#Iwanttofeelnormalagain

Dear Amy, we're sorry to hear that you're experiencing this. We recommend that you discuss it with your surgeon. You may want to request a referral to a physiatrist -- this is a doctor who specializes in helping patients with pain and mobility issues. Thank you for your comment, and best wishes to you.

I had reconstructive surgery about 12 years ago. I have been having this pain and discomfort in my breast for about a year. I have been to my regular doctor and my gynecologist. I have had a sonogram on the breast and all was fine. Next I called Sloan to speak with my nurse practitioner. Her nurse advised me to see my plastic surgeon which i will see in a couple of weeks. Could I fit this criterion years after the surgery? No one seems to be able to help me and I am getting really nervous and anxious about this situation. I would value your opinion as to what I should do now. Is there a physiatrist at Sloan in Commack? Or would I have to go to New York? Thank you Susan

Dear Susan, we're sorry to hear that you're going through this. Unfortunately we do not have a physiatrist working at MSK-Commack at this time. We do recommend that you call 646-888-1929 for a physiatry consult.

For an overview of our Rehabilitation Specialists as well as the therapy services we provide, you can go to
https://www.mskcc.org/cancer-care/diagnosis-treatment/symptom-managemen…

Thank you for your comment, and best wishes to you.

I had my bilateral mastectomy in April 2016 with tissue expanders placed - then exchanged to implants in Aug/16. I felt the tightness/pressure of the Iron Bra immediately and kept asking my PS when it would get better. He kept telling me it was the expanders causing the discomfort and the implants would feel better - it is still just as uncomfortable. I have done much research and joined some closed fb support groups of women experiencing the same symptoms. Apparently, it is caused by the cutting of the Intercostal nerves during the mastectomy surgery. Have you heard this?

Dear Judy, we're sorry to hear that you're experiencing this. We recommend you discuss your concerns with the doctor who performed your surgery. Thank you for your comment, and best wishes to you.

Thank you for this information! At last I have hope that I may be able to overcome issues after my bilateral mastectomy and reconstruction that have interfered with my daily life and, in some instances, become worse over time. It is not all in my head! Just wish I lived in your area...

I had early breast cancer in 1995 with surgery and reconstruction on my right side, I healed with PT, massage, free dance, and counseling.

In 2015, I had preventive surgery on the left side with many problems. The tissue was expanded to 80% which caused necrotic skin and infection. It was a long healing process. Is this happening to other women? Finally the implant was put in, but sagged. Last March I went out of town for surgery to be made smaller. I'm still sore , but I have full range. I hope the pulling feeling goes way. I am keeping active stretching, PT massage, hiking and moving forward.

Dear Donna, we're sorry to hear you went through this. Thank you for sharing your story, and best wishes to you.

Hi, I had a right breast total mastectomy in 2012. As with the rest of you, the area over the site of my surgery feels tight, tender and always have a burning sensation in that area. I cream the area often with Gold Bond Cream. It makes it better. The cream is a little mentholated and it feels soothing for a while. There are days when I feel like I have a football under my arm. although I see no swelling there.I wished someone would have told me what to expect after a mastectomy. Thank you for all the great information.

Dear Luz, we're sorry to hear that you've gone through this. Thank you for sharing your experiences, and best wishes to you.

hi, i been experience severe pain since i have my mastectomy and my implants 12 years ago, my pain is horrible, it feels like a sharp pain inside, under my ribs, and my back, tight, i have trouble sleeping, some days its worst than others, but the last few months got worst. Help please, i do not know what to do...............

Dear Maritza, we're very sorry to hear that you're experiencing this. We recommend that you ask your doctor for a referral to a pain specialist and/or a physical therapist who specializes in working with cancer patients. Thank you for your comment, and best wishes to you.

I'm not sure if this is what I have. I had mastectomy with immediate reconstruction a year ago. As long as I wear a bra with reasonable support I'm ok, as soon as I take my bra off within a few hours I'm in a great deal of pain. I worry that the implant is moving somehow and not wearing a bra will result in the implant slipping down! I didn't have the dermal matrix in reconstruction to support the implant. Is there anything I can do to reduce the pain without a bra, like exercise to increase muscle for supporting it?

Dear Gail, we're sorry to hear that you're going through this. We recommend that you ask your surgeon for a referral to a physical therapist who has experience working with cancer survivors. Thank you for your comment, and best wishes to you.

I just want to say Thank you for this site....I had dbl mastectomy w/tissue expanders 7/16 final implants 11/16.......I too experienced the Iron Bra -- that's exactly what it feels like! I am having a new deeper pain right now in 1 breast and this site has been helpful in what to ask for next Thank you!

Dear Sallee, we're sorry to hear that you've gone through this, but glad to hear that you find the site helpful. Best wishes to you!

I had a lumpectomy with breast reduction and reconstruction in August 3rd. I am having so much pain and sharp shooting electricity in my a
breast having pain under my arms.Swollen in my chest area I cannot find comfort or sleep.please help

Dear Claire, we're so sorry to hear that you're going through this. We recommend that you ask your surgeon for a referral to a physiatrist (a doctor who specializes in pain and rehabilitation) or physical therapist. Thank you for your comment, and best wishes to you.

Please try as hard as possible to make sure that EVERY WOMAN and EVERY DOCTOR is aware of how many women suffer severe and relentless pain after any kind of cancer-related breast surgery. It is a crime that surgical procedures that destroy nerves, resulting in chronic neuropathy, are still allowed, given that conditions like PMRS and PMPS often occur, that most women are not warned before surgery that a life of pain may well await them, and that many doctors know little or nothing about these syndromes. Thank you for helping make these horrific surgical outcomes common knowledge. Too many women are suffering and it should not continue.

I had a masectomy 3 year ago left breast and a reduction on the right.I have sever pain and muscle spasms it feels at times the implant is trying to flip over, and the top corner which scratches me at time. I have talked to several of my doctors and they make me feel like i'm crazy 0ne saying this is expected because i had cancer. He is my reconstruction doctor. for me this site has helped me a lot, just knowing I am not alone. also i have shortness of breath with sweating.

Dear Mildred, we're very sorry to hear that you've been through all this. Thank you for sharing your experiences and best wishes to you.

I just had breast expanders put for the 2nd time (first ones became infected)

I am having a doozy of a time with pain in the left breast, almost like I am being electrocuted.
My doctor gave me Valium for this, but I can't (obviously) take that while I am at work.

Is there any suggestions for how to make this STOP?
My doctor says it's the nerves.

Thank you!
Angie

Dear Angie, we're very sorry to hear that you're experiencing this. We recommend that you ask your surgeon for a referral to a pain specialist. Thank you for your comment, and best wishes to you.

This web site has given me so much hope! I have not felt good since my surgery Dec 2016. I have all of these symptoms! I live on the west coast, can you help me find a Dr in my area that understands what I need?

Dear Kelly, we're sorry to hear that you're going through this. We 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.

12 years ago I had a double mastectomy and DIEP flap reconstruction. My PS had more trouble on the left side in joining the vessels, and 3 mo. after the surgery Also in the Left breast I had a life threatening post-op infection( cellulitis), which put me back in the hospital,for 2 weeks. After that all was well, until last year when in that same breast I started getting a sharp tugging pain slightly to the left of the sternum, which disappears once I’m moving. U/S, x-rays and exams have shown no problem, but it comes back once I’ve sat for 5-10 mins, then goes once I stretch and move. In the last few years I’ve been taking a low dose beta blocker for AF-could it be that with the slower heart rate and poorer circulation the chest wall muscle is cramping? The flaps were only fat, and to me it feels as if my flap Is attached to the chest wall. Any ideas would be much appreciated, as after a year this is concerning me way more than initially!

Dear Tina, we're sorry to hear you've gone through all this. We recommend you ask your surgeon or your regular care provider for a referral to an occupational or physical therapist who specializes in working with women who have had these kinds of problems. Thank you for your comment, and best wishes to you.

I am so glad to have happened upon this discussion. I had Stage III breast cancer, diagnosed January 2014. I had a bi-lateral, nipple and skin sparring, mastectomy, chemotherapy, 33 rounds of radiation, and breast reconstruction surgery. I have been in pain for over 3 1/2 years now because of this. I see a pain management doctor, whose only answer is pain medication, which I have to take, or I will not make it to work. I am 51 years old, my profession is an accountant. I walk for exercise each morning, but my pain persists, sometimes excruciatingly so, even with pain medicine. I need some help and advise. I don't know where to turn.

Dear Suzanne, we're very sorry to hear you're going through this. 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. Thank you for your comment, and best wishes to you.

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