Q&A

On Cancer: Relieving Pain and Other Symptoms after Breast Cancer Surgery

By Christina Pernambuco-Holsten, MA  |  Monday, August 25, 2014
Pictured: Michael Stubblefeld Physiatrist Michael Stubblefield

If you’re experiencing pain or physical limitations after surgery for breast cancer, you’re not alone. Even as doctors at Memorial Sloan Kettering and other institutions work to refine surgical approaches to treatment, up to half of all breast cancer survivors feel pain or discomfort in their upper bodies, such as muscle spasms, tightness, soreness, or swelling.

Taken together these side effects are known as postmastectomy reconstruction sydrome, or PMRS, and experts at our Sillerman Center for Rehabilitation are highly skilled in caring for women with this condition.

To learn more about PMRS, we spoke with MSK physiatrist Michael Stubblefield, who specializes in identifying and treating the long-term complications many cancer survivors face.

First of all, what is postmastectomy reconstruction syndrome?

Postmastectomy reconstruction syndrome is essentially a blanket term used to describe the various neuromuscular, musculoskeletal, pain, and functional problems that can affect the upper body following treatment for breast cancer. If you’ve undergone mastectomy, axillary lymph node dissection, breast reconstruction, or radiation therapy, the symptoms you’re having may be connected to PMRS.

I should also mention that sometimes the disorder is called “post-mastectomy syndrome” or “post-mastectomy pain syndrome.” I prefer the term PMRS because the condition is not always painful and many woman who develop PMRS have undergone breast reconstruction.

Can you say more about the symptoms of PMRS?

The symptoms vary widely and depend on the type of surgery the patient had and whether she received any additional treatments such as radiation therapy. Medical status and other factors unique to each person, such as how a patient’s body scars and heals, also play a role.

For example, a woman whose intercostobrachial nerve [a nerve in the armpit] was affected during surgery may have some barely noticeable numbness in her inner arm, while another woman may develop a condition called intercostal brachial neuralgia, which can be extremely painful with burning, tingling, and other unpleasant neuropathic sensations.

Physical therapy is the mainstay of treatment for most patients.

– Michael Stubblefield, Physiatrist 

Some patients with implants describe tightness and painful spasms of the chest wall, soreness of the muscles, trouble breathing, and a variety of other sensations that can range from inconvenient to disabling.

Women who have had TRAM [transverse rectus abdominus myocutaneous], or other myocutaneous flaps in which the patient’s own tissue is used during the reconstruction, may experience muscle spasms, or neuropathic pain in the area where the tissue was removed. Radiation therapy can cause radiation fibrosis [scarring and hardening of tissue] leading to additional nerve damage and tightening of the chest wall muscles. Shoulder pain and dysfunction are also a common complication of PMRS.

How is postmastectomy reconstruction syndrome diagnosed?

A rehabilitation physician [also called a physiatrist] with experience treating the condition can usually make a diagnosis by reviewing your medical history and performing a basic physical exam. Sometimes additional assessment, such as electromyography to detect abnormal nerve and muscle function, is needed. Imaging such as MRI of the cervical spine, brachial plexus, or shoulder is also helpful in certain situations.

Determining the cause of PMRS can be complicated, and we are still working to understand the underlying reasons why it develops.

What are some of the ways you treat PMRS?

The treatment of PMRS depends on the patient’s symptoms. Physical therapy is the mainstay of treatment for most patients. A skilled therapist may also use such techniques as myofascial release to loosen scarred tissues, neuromuscular reeducation, stretching, and strengthening.

In addition to physical therapy, lymphedema therapy may help people who suffer from lymphedema [swelling caused by removal of lymph nodes] or cording [thick, rope-like structures that form under the skin of the armpit], which are also common complications of PMRS.

Pain medications, usually nerve stabilizers such as pregabalin (Lyrica®) or gabapentin (Neurontin®), are useful in treating neuropathic pain and spasm. Botulinum toxin (Botox®) and other injections can be extremely effective in reducing or eliminating painful spasms.

Comments

I had a double mastectomy and reconstruction in 2013 at MSKCC and I did go thur physical therapy but I notice that I still have difficulty with certain movements. For example recently ideas traveling and it was extremely difficult for me to put my carry on into the overhead but taking it down wasn't an issue. I have been working out and use no weights or 2.5lbs and I experience soreness /fatigue feeling from my shoulder to my elbow . I also feel this at times when running/walking a distances .Not i do not do any weight bearing chest exercises per my plastic surgeons recommendation. Should I go back to physical therapy ?
Thank you

M, we are not able to answer personal medical questions on our blog. We recommend you speak with someone from your MSK healthcare team about your concerns. Thank you for your comment.

It seems to me that most physicians and breast cancer survivors are not aware of this condition. Thank you once again for bringing awareness to the public. Where can I get more information?

Dear Teresa, great question. We checked in with Dr. Stubblefield, and he said the best source is PubMed, a database of biomedical literature maintained by the National Institutes of Health. You can go to http://www.ncbi.nlm.nih.gov/pubmed and search for "post-mastectomy syndrome."

I worked with a PT trained in
Myofacial release for 4 months. I believe that PMPS is caused by nerve cauterization during surgery. The pain we feel is a result of neuroma formation, not scar tissue and adhesions. That is why PT doesn't work. Only treatment is meds and injections in chest. Please refer to the research article do e at the University of San Francisco by Dr. Kathy Tang. This is a breakthrough in treatment of PMPS. I had one set of these trigger point injections and improved 85%! PT makes it worse.

I worked with a PT trained in
Myofacial release for 4 months. I believe that PMPS is caused by nerve cauterization during surgery. The pain we feel is a result of neuroma formation, not scar tissue and adhesions. That is why PT doesn't work. Only treatment is meds and injections in chest. Please refer to the research article do e at the University of San Francisco by Dr. Kathy Tang. This is a breakthrough in treatment of PMPS. I had one set of these trigger point injections and improved 85%! PT makes it worse.

Dear Madelyn, thanks very much for your comment. We shared it with Dr. Stubblefield, who responds: "There are many individual components that comprise the post-mastectomy reconstruction syndrome. A breast cancer survivor can experience one or more of these disorders. Neuroma of the intercostobrachial or other nerves is only one small component of the syndrome. Lidocaine injection into the stump of the intercostobrachial nerve may be useful for some patients but is at best only a temporary solution as the anesthetic quickly wears off with recurrence of symptoms. Other cutaneous nerves cannot be reliably injected which is why myofascial release is an important modality for the vast majority of PMRS survivors. Also, neuroma injection will not be helpful for denervated pectoral or serratus anterior muscles, graft harvest sites, radiation fibrosis, shoulder dysfunction, and numerous other components of the syndrome." Thanks again for sharing your experience.

I am 3 months past my last radiation treatment for breast cancer. I recently began noticing my limited range of motion in the shoulder, and I also have tight, sore pectoral muscles and ligaments in my arm. I do not want it to get worse. When I mentioned it to my radiation oncologist, she said yes, some girls get that. Well, so, what do I do now? I also have mild tingling in that arm sometimes, into the hand. I had 4 lymph nodes removed, and also had a lumpectomy in the left breast. I am cancer free. I did not have to do chemo, but I did do radiation for 33 days = 66 grey. Can you tell me what I should do now to help myself with this condition?

Dear Vickie, the type of specialist who can help you with this condition is called a physiatrist. A physiatrist can perform a medical evaluation and then make a diagnosis and provide treatment recommendations. If you would like to make an appointment at MSK, you can call our Sillerman Rehab Center at 646-888-1900. Thanks so much for reaching out to us, and we wish you the best.

I was not prescribed any PT after my single mastectomy(2011), I got significant relief from a lymphedema therapist over a year after surgery. When will PT become standard practice as after care??

Alaine, thank you for your comment. We agree physical therapy is very important for patients who may need it following treatments such as mastectomy. All breast cancer patients should communicate with their physicians about any symptoms they may be experiencing. You can learn about rehabilitation services at Memorial Sloan Kettering, including our lymphedema therapists here:

http://www.mskcc.org/cancer-care/rehabilitation-services/rehabilitation-medicine-occupational-physical-therapy

Also, if you are interested, here is information (including a video) about lymphedema.

http://www.mskcc.org/cancer-care/adult/breast/lymphedema

Hi, Dr. Stubblefield. I'm sorry to bother you about this but I have been through no mastectomy and only sentinel lymph nodes (5) removal, lumpectomy, aggressive chemo and radiation for triple-negative breast cancer Stage 2, in my one breast, diagnosed last Dec. 5, 2013. I am now experiencing "new" symptoms that I question. I recently ran into your videos and articles (I am able to view Scholarly Journals) on Radiation Induced Fibrosis/Radiation Fibrosis Syndrome. I do have Lymphadema Stage 1 in my trunk/affected breast and into my armpit/nodes area, with no arm involvement and am currently in treatment (MLD) for that. I also have had early and ongoing nerve-related numbness (face/scalp) that I am in PT for. Other than that, my "chemo" and "radiation" symptoms have been improving since I completed treatment in early August 2014. More recently (the past several weeks), I have been experiencing increasing persistent fatigue, general malaise and weakness (overall but especially upper body), upper back, arm and hand pains that don't quite feel just muscular (combo muscular/joint/bone?) that seem to persist, with days of reduced pain where I feel more normal and regain hope of improvement. It seems to return, and for weeks now I just "don't feel right." I would like to know if you think it may be too premature or early for me to attempt to be evaluated for RIF? Should I wait until symptoms are more aggressive, persistent, debilitating before I seek advice? I recently even thought I might have Lyme disease, and was "disappointed" by "normal" bloodwork, as I want an explanation for how I'm feeling. Please advise me as to if you would encourage my early search for medical counsel or waiting until I am more certain that "something is wrong." I feel that with RIF, it appears that early treatment really helps, but I don't want to jump the gun and bother medical professionals before anything can really be determined by testing. I certainly would not hold you responsible for any recourse if you suggest I wait; I just don't want to test "too early" where I might have a premature negative diagnosis. THANK you for any valuable advice you can offer. I appreciate your expertise in this matter.

Kelly

Hi Kelly, thank you for reaching out. Unfortunately we are unable to answer specific medical questions such as this on our blog. (The blog is not actually monitored by physicians such as Dr. Stubblefield so they do not see comments.) We suggest you consult with a physician about the symptoms you describe. If you would like to make an appointment with a Memorial Sloan Kettering physician, please call our Physician Referral Service at 800-525-2225 or go to http://www.mskcc.org/cancer-care/appointment. Thanks for your comment.

Thank you responding back to me via my past comment (11/24/2014). I do have a couple further questions.
Suspecting early RIF, I did just recently consult with my radiation oncologist per my suspicions and he examined my breast and told me "this is normal swelling and thickening, this is not fibrosis" and "RIF doesn't happen in breast cancer treatment." I did question him back about stage 1 of the RIF and how does he know I'm not in an early stage/pre-fibrotic phase, as I do now have problems with lymphadema, and radiating pain in my upper body. He really just dismissed it, and I'm not convinced that RIF is not present. I would like to know 1) what some of the potential "early" signs are of RIF (as I said, just 3 months post radiation now for breast cancer treatment) and 2) what are some of the ways that you at Sloane Kettering diagnose or test at an early phase? I am considering consulting with you and would also like to know what type of doctor I need to schedule with, and what locations I might be able to choose from. Thank you again for your response.

Hi Kelly, we're waiting to hear back from one of our experts re: some of your questions. You might also want to consider giving our Rehab Center a call directly. The number is 646-888-1900. You would see a doctor called a physiatrist, who could then make subsequent recommendations about the type of therapy that would be right for you. You can learn more about our Sillerman Center for Rehabilitation (which is where we see rehab patients) here: http://www.mskcc.org/cancer-care/outpatient/sillerman-rehabilitation. Thanks for reaching out to us again, and we'll post again once we hear back from an expert.

Kelly, we sent your additional questions to Dr. Stubblefield. For question 1, he said, "Early signs can vary dramatically and include pain, weakness, and tightness, depending on which tissues are involved." For question 2, he responded, "History and physical examination are the primary ways we determine if someone has radiation fibrosis syndrome. Certain testing such as MRI or EMG can be useful in some situations." Thank you for your comment.

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