Post-Mastectomy Pain Syndrome: What It Is and How It's Treated
Michael Stubblefield, M.D.
October 5, 2018

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Stubblefield

Michael Stubblefield, M.D. is medical director of cancer rehabilitation at the Kessler Institute for Rehabilitation in New Jersey and the national medical director for Select Medical’s ReVital Cancer Rehabilitation program. He is known around the world for his expertise in the identification, evaluation, and rehabilitation of pain and functional disorders caused by cancer and cancer treatments, particularly problems caused by radiation and chemotherapy. Dr. Stubblefield is an accomplished researcher and has published extensively on medical rehabilitation, oncology, pain management, palliative care, and neurophysiology.

Listen to the podcast to hear Dr. Stubblefield explain:

  • the definition of post-mastectomy pain syndrome and the different ways it affects people
  • how surgeries and radiation can cause this pain syndrome
  • treatments for post-mastectomy pain syndrome
  • the three things that anyone experiencing post-mastectomy pain syndrome should know

Running time: 29:38

Show Full Transcript

Jamie DePolo: Hello, everyone. Welcome to this edition of the Breastcancer.org podcast. I’m Jamie DePolo, senior editor at Breastcancer.org. Today, our guest is Dr. Michael Stubblefield, who is medical director of cancer rehabilitation at the Kessler Institute for Rehabilitation in New Jersey and the national medical director for Select Medical’s ReVital Cancer Rehabilitation program. He is known around the world for his expertise in the identification, evaluation, and rehabilitation of pain and functional disorders caused by cancer and cancer treatments, particularly problems caused by radiation and chemotherapy. 

Named one of America’s Top Doctors, America’s Top Doctors for Cancer, and the New York Metro Area’s Top Doctors by Castle Connolly for many years, Dr. Stubblefield is an accomplished researcher and has published extensively on medical rehabilitation, oncology, pain management, palliative care, and neurophysiology. He serves on the editorial board of the journal Muscle and Nerve and is a peer reviewer for more than 30 journals. He also is the editor of Cancer Rehabilitation: Principles and Practice, the only comprehensive textbook in the field, and has also authored numerous review articles and book chapters in the field of cancer rehabilitation. 

He joins us today to talk about post-mastectomy pain syndrome — and that’s pain that occurs in the chest wall and the upper body after breast cancer surgery — and ways to manage that pain. Dr. Stubblefield, welcome to the podcast. 

Dr. Michael Stubblefield: Thank you so much, Jamie. I believe this is our second podcast together, and it’s really a pleasure to be back.  

Jamie DePolo: Yes, and again, thank you so much for your insights on neuropathy. I know people found that very helpful, and I’m sure that they are going to find this podcast just as helpful. 

To start, if you could just sort of explain what post-mastectomy pain syndrome is and how it happens. I know it goes by several different names, so if you could kind of explain what’s going on there. 

Dr. Michael Stubblefield: Yeah, absolutely. This is one of those diagnoses that is still very much in evolution in terms of the components. I see a tremendous amount of it. I get a lot of patients with post-mastectomy pain referred to me, and to be honest, my understanding of it has changed dramatically since I first started in cancer rehab several years ago. 

So, in its basic sense, this is chronic pain, meaning not just your post-surgical pain, which everybody is expected to get, but chronic pain that continues after the normal healing time for breast cancer surgery. Now, it needs to be differentiated from other things that hurt after breast cancer, like shoulder dysfunction in breast cancer (nice topic for another podcast), from pain from axillary cording, and a number of others. This is really largely a neuropathic pain disorder, which is, I think, the reason for much of the confusion. 

So, any time you do a mastectomy, you have to just, by necessity, cut through a number of nerves. If you do an axillary lymph node dissection, you cut through other nerves, and if you do reconstructive surgery, depending on the type you got, you damage other nerves still. So, any time you damage a nerve, you’re going to have the potential of having pain in the distribution of that nerve. Sometimes this is caused by what we call neuromas, which are abnormal growths at the stump where the nerve was cut. There’s probably other inflammatory causes of this. Sometimes the pain is caused by spasms of muscles that are spasming in response to the nerve. So, for most patients, it’s pain in the chest, when it’s neuropathic, from the nerve sending false signals, it’s described as sharp, burning, throbbing, lancinating. It has these what are characteristically neuropathic names to it. It can go down the arm, particularly on the inner arm, where something called the intercostobrachial nerve is sacrificed, particularly during lumpectomy. 

But the big contribution, I think, that we’re starting to see now is sometimes the motor nerves, not just the sensation nerves, but the motor nerves are damaged. And when that happens, the muscle that those nerves would normally go to can spasm and cause squeezing of the chest wall, or cramping of the chest wall, or cramping in the armpit. And that, in its essence, those symptoms are what most people call post-mastectomy. 

Now, I remember when we were putting this together, when we were going over the topics we’d be discussing within post-mastectomy, that the concept of phantom pain came up. And that is also a component of post-mastectomy syndrome. So, if you think of somebody who loses a leg, you know, the reason they’re having these phantom sensations, like the limb is still there, the limb’s painful, or the limb’s on fire, is because the nerves going to that limb have been severed. And they get neuroma formation, and some people are just unlucky for a variety of reasons and start having these phantom sensations. 

The breast is the exact same. So, when you cut through those sensory nerves that supply the skin of the breast, those nerves may respond badly and start sending signals to the brain that there’s still a breast there that can be itchy, burning, squeezing, painful, any number of sensations. And that is just one component of what some people feel in this post-mastectomy syndrome situation. 

Jamie DePolo: Okay, thank you. So, that answers one of my other questions. So, phantom breast pain is all under this larger umbrella of post-mastectomy pain syndrome. It’s sort of included in there. 

Dr. Michael Stubblefield: Exactly. You know, the way to think of it, it’s a neuropathic symptom that lasts beyond what would be the normal healing of the chest wall after mastectomy or reconstruction. And phantom breast pain is exactly one of those symptoms that you would have. 

Jamie DePolo: So how common is this? I mean, it sounds very unpleasant, painful. Do we know how common it is and how long it lasts? 

Dr. Michael Stubblefield: So, a great question, and the answer is we really don’t know. You know, there’s very few good epidemiologic studies on post-mastectomy. It can be as much as a third of patients have some. Probably around 10% have fairly severe. A lower percentage, 1 or 5%, have pain that is really intractable and very difficult to treat. But the truth is, because our definitions for it are a bit of a moving target and it’s not something that is really well studied, we don’t have a great answer. 

Also, there’s a number of different types of mastectomy and reconstruction procedures out there, and different surgeons have different techniques, so it may vary from institution to institution and surgeon to surgeon. 

Jamie DePolo: Judging from your practice, is there any way to say roughly how long it lasts, or is that very much individualized as well? 

Dr. Michael Stubblefield: Very individualized. We’ll have women who come in who’ve had it for 3 months since their surgery or 6 months since their surgery, and we may have women who come in who’ve had it for 10 years past their surgery. And then, when we treat them, some women will respond almost instantly to the modalities and literally have cures. It’s very funny, some of the techniques we use. I’ve had women who don’t show up again, and I’ll get on the phone and just make sure everything’s going okay, and they’re like, “Oh, no, it’s gone. So I didn’t think I needed to come in.” 

And then you have other women where it’s just one of the hardest things to treat. Everything I try is ineffective, and it’s still just all over the place, and I think that’s the experience of a lot of us who see this with any regularity. 

Jamie DePolo: Now, does this ever happen to men? I know male breast cancer is much rarer than breast cancer in women, but it seems like with a mastectomy in a man, nerves would still be cut. 

Dr. Michael Stubblefield: Absolutely. There’s no reason why this wouldn’t happen in men. But male breast cancer is 1% or so of all breast cancers treated. So it’s much less likely. You know, if you have a hundred women with this, statistically you should have one man who has it, but in my experience, it has been fairly rare. Also, the men tend not to get reconstructions, so the incidence is probably less. The reconstructions are probably responsible — again, we don’t know the number — responsible for precipitating this syndrome in a fairly significant number of people. 

Jamie DePolo: So, I have two questions, then. A lot of people on the site talk about this happening, and even the name is post-mastectomy pain syndrome, but you mentioned before, you were talking about the nerves on the inside of the arm, especially with lumpectomy. So, is this a risk after lumpectomy as well?  

Dr. Michael Stubblefield: Absolutely. It’s really any surgery. So, the different types of breast surgery, the lumpectomy’s the smallest and simplest. You take the tumor, and then a zone of “normal” tissue around the tumor, and you look at it under the microscope to make sure it is in fact normal. But that can be quite a substantial piece of the breast, and to get to it, you often have to go through the skin and the nerve — well, you always have to go through the skin, and you often will go through a nerve. So, if even a single nerve is damaged, that can cause it. 

Then, with a lot of lumpectomies, it’s not just the surgery, it’s also the radiation. So, when we radiate the bed that that tumor was in, that further damages the nerves and can cause — in this case we call it post-lumpectomy pain syndrome, but in general we’re calling it post-mastectomy pain syndrome, kind of regardless of what the breast surgery is. And this is where I struggled, is actually coming up with a name — this is the name that’s used in the literature, the post-mastectomy pain syndrome — but coming up with a name that really is all-inclusive of the vast variety of breast treatments that would cause this syndrome. 

Jamie DePolo: Okay, that’s helpful. Now, going back to reconstruction. In many cases, not always, but in many cases, reconstruction requires multiple surgeries. You know, if you have implant reconstruction and you have expanders, or even sometimes with reconstruction using your own tissue, there’s still some touch-up surgeries that get done. I guess I’m wondering, is it the amount of surgery, like, the enormity of what is done that is perhaps more risky for the pain syndrome, or is it just certain people are more susceptible? Is it the number of surgeries? How does that fit into all this?  

Dr. Michael Stubblefield: The answer is all of the above, but I think the biggest one… I know, very helpful, right? I think the biggest factor is really just the patient, and you cannot predict who’s going to get this. I think it’s kind of luck of the draw, same surgeon doing same exact surgery, and one patient gets it and the other ten don’t. And there’s no good rhyme or reason that we can ascertain as yet what the cause is. More surgery is probably associated with a higher risk, but not always. 

You said, we’ve women with just very small, simple lumpectomy who come out with significant, very difficult-to-treat post-mastectomy pain syndrome. And we’ll have women who’ve had, you know, bilateral modified radical mastectomies with any kind of reconstruction, and be, “Oh, no, I’m fine.” We really cannot always predict. The type of reconstruction probably makes a bit of a difference, but even there, we really don’t have good data on it.  

So, the tissue expanders is one good example. So, you know — and just to kind of educate the audience a little bit, there are many ways to reconstruct a breast. And this, I say one of the most common, really is most common depending on where you are being treated and in some cases what country you’re being treated in. I’ve traveled quite a lot internationally, and I see that there’s big sort of ways of doing things in Singapore versus Italy versus the United States. 

So, when I was at Sloan Kettering, before I came to Select Medical, the most common reconstruction there, I think, was just doing implants. An implant is, you take basically an artificial breast implant, but it’s a special one that has a port on it, so you can inject a needle through the skin into the port and put saline on it. You put it under the pectoral muscle, that’s the big muscle under the breast. Like, when you look at Arnold Schwarzenegger’s chest, he has those giant muscles? Those are the pectoral muscles. So, you put them under the pec muscle. The problem with that is when you put them under the pec muscle, the nerve that goes to the pectoral muscle, called the greater pectoral nerve, can be damaged. It can be scratched, it can be irritated. So, those implants in some people — most do fine, but in some — can cause a lot of spasm of the pectoral muscle. You would not get that same spasm of the pectoral muscle if you’re doing other types of implants where you don’t put an implant underneath the pec. 

Some of the other implants you describe, where you use your body’s own tissue — so, for instance, a TRAM flap, a transverse rectus abdominus flap. You take muscle, right next to the belly button, along with the fat next to the belly button, you get a little tummy tuck with it. You take all of that out, that’s a free flap, and sew it into where the breast used to be. Or you could do it as what’s called a pedicle flap, meaning it’s still connected to its own blood supply, and it’s sort of tunneled under the skin and sewn in. Those don’t tend to make the pectoral muscle spasm, because you didn’t go in where the pectoral nerve is, but now you can have abdominal wall issues as part of your post-mastectomy syndrome. 

You know, there’s another one called a lat flap, latissimus dorsi flap, where you take part of the big muscle of the back, and you turn that around and use it to construct a pec. Now, all of a sudden, you can have back issues as a result of the implant or of the tissue graft being taken, and sometimes those are also used with an implant. So, it gets a little bit confusing in terms of the number of types, but each one has its own set of evils, if you will, in terms of the type of post-surgical pain issues that you can have. 

Jamie DePolo: That’s kind of what I thought, but it’s certainly good to have that confirmed. And from what you’re saying, too, it sounds like there aren’t really any risk factors that you could flag somebody and say, “We think you’re at higher risk for this, here’s what you need to know.” 

Dr. Michael Stubblefield: Yeah, there have been risk factors that have been documented, but I think a lot of them are very idiosyncratic. So, patients who have other pain syndromes before this are more likely to have it. Younger patients are more likely to have it. And there’s a few others out there, but again, the risk is low, and it tends to be idiosyncratic. So, I don’t see any of the risk factors as being, at this point in time, able to have us guide patients to having certain kinds of mastectomies or certain kinds of reconstruction. So, I don’t find the risk factors that useful yet, the ones that have been sort of softly defined. 

Jamie DePolo: Okay, well, that’s good to know. So, probably the most important question, then, I’m going to ask is, so, what are the treatments for this? How can this be eased or made bearable? 

Dr. Michael Stubblefield: Yeah, absolutely, and again, the answer is it depends. So, there’s two sort of distinct pain syndromes within post-mastectomy that are quite big sub-headings of post-mastectomy. One is this neuropathic pain. So, that’s the burning, shooting, lancinating type of pain, and also phantom breast pain I would put under the neuropathic umbrella. Then there’s the muscle spasm that I talked about with the implants going under the pec, and also just the general irritation and damage that can be done from the mastectomy itself, and that is the squeezing, tight, pulling sort of pain. And they’re often both together. 

One of the main things I have to do when I see a patient is try to decide, are we dealing with pure nerve pain, are we dealing with pure muscle spasm pain, or do we have a combination of both, which is very common. And some of the ways I tell that is just their description of the pain. Also, if I squeeze the muscles that are likely to be affected, poke and prod on them as part of your physical exam and those muscles are tender, then it tells me those muscles are probably spasming. 

So, regardless of the type, the initial treatment is almost always a specialized type of physical therapy which involves something called myofascial release, that just means the muscle and the fascia. The fascia is the connective tissue that surrounds muscle. Both the muscle and the fascia can get damaged and scarred during any surgical procedure, particularly mastectomy, reconstruction, lymph node dissection, all of those. So, therapists who have special training, in our program, our ReVital program, we specifically train them in these techniques for cancer because they’re a little different from what you might use in other places. You need to understand the difference between the types of mastectomies and reconstructions and the other issues that go along with breast cancer. 

They’ll use these special techniques to try to un-entrap the nerve. So, if you picture in your head a wire that is bound in concrete and the concrete doesn’t move, or the wire that’s bound in some other hard substance, the myofascial release is trying to get all of the concrete, the hard tissue around that wire, to soften up. And when it softens up, there’s less pressure on the nerve, the nerve sends less false signals, and that helps decrease both the neuropathic symptoms that we described and the muscle spasm symptoms that we described. 

So, that’s kind of number one, two, and three on our list of things to do is the special physical therapy with the special manual techniques, particularly this myofascial release. And so, people out there listening who have this, what you want to do is you want to find a therapist who preferably has both cancer experience and myofascial technique experience. But if you have to have one, you really want the myofascial therapist to try to work on you with these techniques. 

So, from the physician point of view, I don’t do those manual techniques. I don’t even pretend to know how to do them, that’s why we have all these amazing physical therapists out there. The things I can do are more medically related. So medication. So, there are a number of nerve-stabilizing medications that in certain patients will help dramatically with this. So, things like Lyrica, pregabalin is the generic name, Neurontin, gabapentin is the generic name, duloxetine, Cymbalta, certain muscle relaxants. These medications sometimes can help with the neuropathic pain, and particularly in the case of pregabalin, gabapentin, Neurontin and Lyrica respectively, it can help with the spasm component. 

So, from my point of view as a physician, almost all of the patients coming in to see me will initially go see one of my specialized physical therapists, and we will have a discussion about if they want to try medication, understanding that not all people want to even try a medicine, much less have the potential of being on it for any period of time. It is sometimes necessary to rotate the medicines, to try different ones to find one that is effective for the patient and agrees with them. And that will often be the second, third visit, and some patients just don’t respond to anything. 

If the medications and the therapy haven’t worked, then we start talking about procedures. So, I have a couple of procedures that can be effective in post-mastectomy pain syndrome. One of them are intercostal nerve blocks. So, what I do is try to identify the little stumps, the neuromas where the nerves were cut, and I inject lidocaine or a lidocaine-like medicine — I usually use bupivacaine, it lasts longer — and a small amount of a local steroid right on top of the nerve. And that helps decrease the inflammation, soften up the tissue, and in combination with the therapy, sometimes helps. 

When I have patients who have that squeezing, spasm pain, like the pectoral muscle, that big muscle on Arnold Schwarzenegger that the implant is under, when that muscle is spasming, I can actually put Botox in it. Botox, the reason ladies like it for their wrinkles is what it does is it poisons where the nerve talks to the muscle, in a reversible way. It goes away, given enough time. So, your wrinkles go away simply because the nerve can’t make the muscle spasm. We use it in spasticity, like people who’ve had strokes or cerebral palsy also to relax the muscles. 

So, guess what happens if I have a spasming pectoral muscle or the serratus muscle on the side of the body? If I put the Botox in it, it not only relaxes the muscle, but actually has an analgesic, a pain-relieving effect, as well. So, the Botox can be very effective in the right type of patient. And it’s not an approved Botox indication, it’s an off-label indication. I bill it as a dystonia, because it is an abnormal spasm from nerve damage, like other dystonias, and in some patients it works really, really well. 

Jamie DePolo: Wow. So, I know that both nerve blocks and the Botox, as you said, will eventually wear off. Do you know roughly how long that would last?  

Dr. Michael Stubblefield: Yeah. So, the nerve blocks are anywhere from lasting until the lidocaine wears off, the bupivacaine wears off in, like, 8 hours to lasting a month or longer. The Botox is different. It can last 3 months, and the patients who I treat don’t show up? The ones that I’m remembering, all Botox patients. For some reason, once I get those muscles to stop spasming, in some patients — again, this is not everybody by any stretch — in some patients it’s been really just remarkable, that you’re basically resetting the nervous system, and the patients do well for very long periods of time if not indefinitely. But that’s really rare. That’s not the rule. 

Jamie DePolo: Okay. And I interrupted with that question. Are there any other treatments that you, as a physician, would try? Or procedures, I guess I should say? 

Dr. Michael Stubblefield: Yeah. So, yes, there are more ablative procedures, meaning — the Botox and the intercostal blocks, those are reversible, right? If they don’t work, it’s no harm, no foul. But the more ablative procedures, where you’d use radio frequency to ablate the nerve, that’s a much more permanent thing, and if you get it wrong, whatever you have, you kind of have afterwards. So, if it made your pain worse, your pain’s worse. But I have seen those done in patients with mixed results, like all of these procedures. And then there’s things like acupuncture, absolutely, that could be very useful for some people. 

Other sort of therapy techniques, like mind/body relaxation techniques, absolutely very useful. There’s a nerve stimulator that was just approved by the FDA that I am looking forward to trying. It’s actually — again, I’ve never done this on post-mastectomy, but I have several patients who’ve been refractory. And I put two little small electrodes under the skin, and you leave them there for a month, and you hook them up to a very small little pulse generator that stimulates. And that may be a way of retraining the nervous system to behave in some of these patients, so I’m very excited to try that as well. 

Jamie DePolo: So, it’s almost like a TENS system that people use if they have herniated disks in their backs and things like that?  

Dr. Michael Stubblefield: Exactly, and of course, we do TENS and electrical in therapy, but I don’t think those are as effective on the myofascial. This is different because of the duration of the time that you would be using it. You’d basically be using it effectively continuously for a month. So, that will have very different physiologic effects on the nerve than just TENS, where you’re doing it for shorter periods of time.  

Jamie DePolo: So, in addition to some of these things, like I’m wondering, in addition to the myofascial release that a physical therapist would do, or even in addition to a nerve block or Botox that you would do, can a person help herself by — are there stretches that you recommend for someone with this syndrome? Are there exercises? Can those help, too? 

Dr. Michael Stubblefield: No. I would never recommend that somebody just go out and do these on their own. I really want them to have a preferably experienced as well as skilled physical therapist try to walk them through the sorts of things that they would do. A lot of what you need to do is not intuitive, and that’s why the therapist is there, to try to guide you into the right things. And what people tend to do is they do the stuff that’s easy and works well, right? And that’s not always the things that need to be done for this. 

So, stretches and conditioning exercises and strengthening exercises absolutely would be a part of a comprehensive rehabilitation program, but I really would like those guided by a licensed physical therapist. 

Jamie DePolo: Okay, that makes sense, absolutely. And before we wrap up, some people have reported that they have itching in addition to the pain? Now is that common, and is that treated any differently, or is that still a nerve symptom?  

Dr. Michael Stubblefield: Yeah, exactly, great question. It’s just a part of the nerve symptoms. So, whenever you damage a nerve that’s going to a patch of skin, wherever, when you damage it, what happens is those nerve fibers just start firing. And it’s kind of random the way they fire, based on how you were injured and your own sensibilities and a number of factors we really don’t know. So what they’re doing is they’re sending false signals, like a short-circuiting wire, into the spinal cord and up to the brain. 

The brain is being met with this garbage input, it doesn’t know what to do with it. So it’s going to process it in the closest sort of analogous thing that it senses. So, it may process it as pain. It may process it as numbness, even though it’s not true numbness. Or it may process it as itching, or it may process it as electricity. So, itching, phantom pain, and all of those are really part and parcel of just a nerve being damaged and sending false signals into the brain. 

Jamie DePolo: Okay, so, it sounds like the treatment would be… 

Dr. Michael Stubblefield: The treatment would be the same.  

Jamie DePolo: That makes sense. So, to sort of summarize for everybody, what would you say are the three main points, if someone is suffering from post-mastectomy pain syndrome, what would you want her to know? 

Dr. Michael Stubblefield: So, the first one is to get an accurate diagnosis. There’s a lot of other causes of pain in the upper body other than post-mastectomy syndrome after breast cancer treatment. It can be a frozen shoulder. It can be cords in the axilla, these little fibrous bands that you can get. It can be a number of things. So you first want to make sure that it is post-mastectomy pain syndrome. And a pain specialist, most will have some knowledge of this. Rehab doctors like myself usually should have… the best would be to go to a cancer-specific rehab physician, if you can, to get the diagnosis. 

The second thing, if you do have it, you really want, as your first starting point, to seek out a physical therapist who’s knowledgeable both in cancer and myofascial release. That’s really the first place to start, and for the majority of my patients, that does it, particularly early on. Earlier is better with the treatment of this. If it becomes chronic, it almost always gets harder to treat. 

And then, the third is be patient, you know? It often takes a lot of time to find, for particularly the refractory patients, a combination of treatment modalities that is going to make your pain better.  

Jamie DePolo: Excellent advice. Thank you so much. I think this will be very helpful for a lot of people who are suffering this very, very troubling side effect. 

Dr. Michael Stubblefield: Thank you so much, Jamie. It’s really an honor to be here, and I appreciate being able to talk to the audience.

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