Cancer Treatments Making You Feel Lousy? Consult a Cancer Rehab Specialist

Cancer treatments save lives.  But as we all know, they can have many side effects.  Many cancer patients feel perfectly fine when they are diagnosed, but feel terrible after they are treated.  Cancer can cause fatigue.  Surgery can cause pain and immobility.  Chemotherapy can affect your nerves.  Radiation can affect the skin and cause stiffness and scar tissue.  Hormone medications can cause joint and muscle pain.

Cancer patients are often told to accept their “new normal” after treatment.  They are often counseled to be happy that they survived their cancer, and to adapt to the new side effects of their treatment.  Many patients that I see tell me they talked to their doctors, nurses, and social workers about their symptoms and receive sympathy, but no treatment plan.  Patients who have strokes or heart attacks standardly receive rehabilitation.  It is time for rehabilitation to become a standard part of treatment for cancer patients.   There are now over 13 million cancer survivors in the United States, most of which would benefit from rehabilitation services.  I believe this “new normal” should not be accepted.

Physiatrists, like me, are medical doctors who specialize in physical medicine and rehabilitation.  We are doctors who specialize in improving patients’ function and quality of life.  We are experts in the non-surgical management of problems with bone, muscle, and nerve.  We can help with cancer related symptoms by prescribing exercise, specific rehabilitation prescriptions, equipment, medications, and sometimes injections.   We can use EMG’s and ultrasound to help diagnose problems with nerves and muscles.  Physiatrists work closely with other allied health professionals like physical, occupational, and speech therapists to improve patients’ quality of life.

Let’s discuss some common examples of how a physiatrist like me would help a patient:

Post-mastectomy pain: I frequently see woman with chronic pain after breast cancer surgery.  The first and most important thing I do is determine exactly what is causing the pain.  Pain could be coming from the incision, from a nerve in the armpit, from the rotator cuff, from muscle around the neck or shoulder, from spasm around the implant after reconstruction, or from stiffness (fibrosis) caused by radiation.  Once I have a specific diagnosis, I can develop an appropriate rehabilitation plan which might include specific physical therapy and exercise, oral or topical medications for pain and spasm, or if needed, injections for pain and spasm.  In addition, I often see pain caused by tamoxifen or aromatase-inhibitors, which are the hormone medications given to women with certain types of breast cancers.  There are several different approaches that can be helpful for these symptoms.

Fatigue:  Fatigue is the most common symptom reported by cancer survivors.  There are many reasons for fatigue, and some are poorly understood.  Fatigue in cancer is typically not relieved by resting.  It may seem counterintuitive, but the best treatment for fatigue is exercise.   The key is having an exercise program under the guidance of a physiatrist.  In addition, you may need to be taught an energy conservation program, that will help you learn how to properly utilize your energy throughout the day.

Neuropathy: This can be one of the most debilitating cancer treatment related side effects.  Neuropathy can cause numbness, tingling, and burning pain.  It can affect walking and balance, leading to the risk of falls.  In addition, it can cause some strange symptoms like changes in blood pressure, heat intolerance, and dizziness, which we call autonomic neuropathy.  The first step is to be evaluated by a physiatrist that can determine if you indeed have neuropathy, and if so how it is affecting you.   My treatment plan for neuropathy includes ensuring you are safe by assessing and treating your balance.  I will treat the pain/tingling with oral or topical medications, or even possibly fancy electrical stimulation devices.  There are also things that can be done for the strange autonomic symptoms I mentioned.

Chemo-brain: This is a very common symptom that can be debilitating.  The first and most important thing is to ensure that your difficulty with thinking is only related to chemotherapy and not any other underlying problem.  The good news is that these symptoms typically improve after the chemotherapy stops.  I have found the best treatment for these symptoms, is to develop an interdisciplinary treatment plan with my speech therapists who can help patients compensate for these cognitive problems so they can work, function, and live their lives effectively and safely.

Prevention: One of my favorite roles is to get involved with a cancer patient immediately after diagnosis.  When I see a patient early, I can assess them for any pre-existing impairments (like a shoulder problem or carpal tunnel syndrome).  I will try to improve this problem to help ensure it doesn’t get worse during treatment.  In addition, I can do a pre-surgical assessment for lymphedema if the patient will be at risk for this condition after lymph nodes are removed.  This will allow me to catch lymphedema early after treatment to prevent it from becoming a big problem.  At this stage I can also discuss exercise and how it can be helpful to reduce side effects from cancer treatments and also decrease the chance of cancer coming back.  I also love to work with patients with head and neck cancers to help prevent and treat problems with eating, swallowing, communication, and pain.

As you can see, there can be many helpful roles of a physiatrist in cancer care.  The patients, oncologists, and surgeons that I work with are very appreciative of all that rehabilitation can do to help.  So if you or a loved one has cancer, ask your doctors to refer you to a physiatrist to help you with your symptoms.  This webpage can be used to help you find a physiatrist near you: http://www.aapmr.org/patients/findphysician/Pages/default.aspx

Joint Pains and Aromatase Inhibitors/Tamoxifen

Aromatase inhibitors (AIs) and tamoxifen are critically important hormonal drugs to help prevent the recurrence of certain types of breast cancers.  Unfortunately, they can have a multitude of side effects.  Joint pains are the side effects that I most frequently encounter. Patients are often referred to me by their oncologists to help manage these symptoms.  This is one of the most rewarding parts of my job, because I know that if I can help the patient tolerate this medication, I may be helping to prevent the cancer from coming back. 

While it is not completely clear why this side effect occurs, the decreased estrogen levels caused by these medications, most likely increases inflammation in the body, leading to pain.  If someone has a pre-existing muscle, tendon, or joint problem, it very commonly will get worse while on these medications.  I frequently see hip, knee, back, hand, and foot pain.  Other very common problems I see are carpal tunnel syndrome, wrist tendinitis, and trigger fingers (stuck fingers).  Often, the symptoms will look just like run of the mill arthritis, but when I take x-rays of the achy joint it is completely normal!  This is often surprising when the joint is so painful but it tells me that while the joint is not wearing down, it is likely just inflamed from the medication.

Unfortunately, as I tell my patients right up front, there is no magic potion to make these symptoms go away.  Every patient is different and so my treatment plans are very much individualized based on the type of pain a patient has, where the pain is located, how many muscles/joints are involved, the patient’s weight and baseline fitness status, what type of exercise the patient likes (or doesn’t like) to do, and overall functional goals.  I like to create both a global and focal approach.  By this, I mean that I like to use a global approach which will hopefully help with symptoms all over the body, in addition to a focal approach to attack a particularly bothersome part of the body.

Below are options that can help with overall body pain:

1) Exercise: This is typically my most difficult conversation during a visit with a patient.  It seems very counterintuitive that starting a cardiovascular exercise program is going to help the patient’s achy joints.  Often times patients will tell me that exercising is the last thing they could imagine doing.  However, there is great scientific evidence that exercise can help with these symptoms.  The key is to get people started slowly.  If a patient is completely foreign to exercise, I will send them to one of my physical therapists to help get them started in a program.  If the patient is fairly comfortable with exercise, I may give them an individually tailored exercise program.  If the person starts slowly and builds up over time, in general they will tolerate the exercise and slowly begin to feel better.  If a particular joint is very bothersome (like a knee or hip), I may help them with a brace, or modify the exercise program to take that into consideration.

      2) Medications: There is no single medication that works well for everyone.  Some of my patients do very well on just over the counter acetaminophen or ibuprofen.  PLEASE keep in mind that even though these are over the counter drugs, they can still have side effects, so please discuss this with your doctor.  Topical medications (like diclofenac gel) can also work wonders for these symptoms, but sometimes insurance doesn’t cover this prescription medication.  If these simple approaches don’t work, I may prescribe medications like Lyrica (pregabalin) or Cymbalta (duloxetine).  While there have been no major studies looking at Lyrica for these symptoms, I have seen it work well for some patients.  There is good evidence that Cymbalta does work for these symptoms.  Unfortunately, some patients don’t tolerate these medications due to side effects.  Keep in mind that just because a side effect is listed by a drug company, it does not mean that YOU will get that side effect.  Many of my patients tolerate these drugs without side effects.

      3) Acupuncture: Many people ask me about acupuncture and my answer is always the same – there is no reason not to try it.  It is a very safe and effective treatment that has been around for a few gazillion years for a reason – it often works!  There is good scientific evidence that shows that acupuncture works for these symptoms.  If you have lymphedema or are at risk for lymphedema, you may want to avoid needles in that at-risk arm.

      4) Glucosamine/chondroitin sulfate: These are very safe supplements that can help to restore normal joint surfaces.  The dose that has been studied is glucosamine 1500 mg/day and chondroitin sulfate 1200 mg/day.  There is reasonably good evidence that this may help these symptoms.  Use caution if you have a shellfish allergy.  I usually tell people that the most common side effect is that it effects your pocketbook.  This will not be insurance covered so you need to pay out of pocket.  Most people notice it helping within 4-6 weeks, so if it’s not helping by that point, it’s probably not worth continuing it.

      5) Vitamin D: At this point, there have been some studies showing low Vitamin D levels may lead to more joint pains while on hormon therapy, and another refuting that.  Therefore, I’m not sure what the best thing is to recommend regarding Vitamin D.  However, what I typically do is draw your blood to check your Vitamin D level.  If it is low, it’s probably a good idea to take a Vitamin D supplement.

Now let’s discuss what I call the focal approach.  If there is a specific part of the body that’s particularly bothersome I will try to use specific strategies for that.  For example, if the biggest problem is wrist tendinitis, I will typically prescribe occupational hand therapy, a wrist splint, a topical anti-inflammatory and possibly perform an injection if all else fails.  If one knee is very painful, I may prescribe physical therapy for the knee, a knee brace, and possibly a knee injection if all else fails. 

I typically find that a combination of global and focal treatments leads to success.  There may be some trial and error involved before coming up with the perfect treatment.  For that reason I like to see patients quite frequently until we have found the right treatment.  With a little bit of effort, we can often find the right approach which will help the patient tolerate these potentially life saving medications.

Lastly, if you are experiencing these symptoms and your oncologist has not helped you tolerate the symptoms, ask to be referred to a specialist – preferably a cancer rehab specialist (physiatrist) like me.   If your oncologist doesn’t know a physiatrist – ask them to find one.  If the oncologist’s office or cancer center doesn’t have a physiatrist – tell them to ask their medical director to look into hiring one.   If you are an oncologist reading this blog post – try to get your cancer center to hire a physiatrist, or at least find one in your area that you can send patients to.   Orthopedists typically are not interested in managing these symptoms (since there is no indication for surgery), so physiatrists are the best equipped physicians to help with this problem.

Pain in Breast Cancer Patients

There are lots of potential causes of pain in breast cancer patients:

1) Incisional pain: The breast or armpit incision (if lymph nodes removed) can be a source of pain.  This is most common in the first month after surgery.  However, after radiation, this can cause more scar tissue to form which can worsen incisional pain.

2) Shoulder pain: This is one of the most common causes of pain after breast cancer treatment.  Surgery and radiation can change the mechanics of the shoulder and lead to pain usually from the rotator cuff, but also from other structures.

3) Nerve pain: There is a small nerve in the armpit area, called the intercostobrachial nerve, which is often inflamed or injured when lymph nodes are removed.  This is the most common cause of pain in the armpit region.  This can be treated with medications and physical therapy.  If that doesn't work, I perform ultrasound-guided nerve block injections for this pain.  This type of injection has not been reported in the medical literature for this specific pain source.  I am currently working on publishing some of the cases that I have successfully treated with this injection.

4) Other sources of arm pain: Carpal tunnel syndrome (especially with lymphedema), tennis elbow, or basically any other common arm pain symptoms can be worsened after breast cancer treatment.

5) Radiation fibrosis: Radiation can cause a chronic deposition of scar tissue in the radiation field which can lead to stiffness and pain.

6) Aromatase inhibitor induced joint pains (arthralgias): Aromatase-inhibitors are the hormone medications given to patients with estrogen sensitive tumors.  Joint, muscle, and tendon pain is a very common side effect of these medications.  I see patients with knee pain, hip pain, hand and foot pain.  In addition I frequently see fingers that get stuck, also called "trigger finger".

7) Post-reconstruction pain:  I often see patients after tissue expander and implant breast reconstruction with pain in the chest region due to spasm of the pectoral muscle.  This can be treated with physical therapy and medications.  If that doesn't work, botox injections can be effective for this.

8) Chemo-induced neuropathy: Chemotherapy can affect the nerves and can make any of the above pain syndromes worse.

So in summary, there are many different causes of pain in breast cancer patients.  A cancer rehab specialist such as myself can pinpoint the source of pain, and develop a specific treatment plan.

Lymphedema and Exercise

In the past people at risk for lymphedema or with lymphedema were told not to exercise.  This is outdated information.  The benefits and safety of exercise are backed up by great scientific research. 

If you are risk for lymphedema, it is generally recommended to wear a compression sleeve with heavy exertional activity.  Weight training/therabands are ok with the at risk arm as long as it is not more difficult than what you would consider "a little bit difficult".  In fact, if you are wearing a compression sleeve and following these recommendations, it may help to prevent lymphedema.  There is no "max weight limit" as long as it's no more than " a little difficult".  Slowly over time you should be able to increase your tolerated weight.

If you have lymphedema, essentially the same rules apply and the exercise may help to reduce the edema.

Generalized cardiovascular exercise will also help.  Given that there is a very close association with increased weight and lymphedema, getting in the best shape you can be in will definitely help to reduce the risk of getting lymphedema and may help lymphedema if you already have it.

Chemotherapy Induced Neuropathy Treatment

Unfortunately neuropathy associated with chemotherapy is often inadequately treated.  In my practice, as a cancer rehabilitation physician who specializes in treating cancer related muscle, joint, and nerve side effects, I often see patients who have been inadequately treated for neuropathy for a year or more.  The main reason for this is that the patients' oncologists will try to manage the symptoms.  Most of the oncologists that I interact with are only comfortable using a few different medications for neuropathy, and not always the most appropriate ones.   I do NOT want to badmouth the oncologists in any way.  They do an incredible job treating cancer, and without their life-saving treatments, I wouldn't be seeing these patients in the first place.  However, I do believe there are other specialists, such as myself, that would probably have more success treating these symptoms.  Here's my breakdown of neuropathy treatments:

1) Be sure that neuropathy is not affecting your balance.  If this is the case, this needs to be addressed first.  If I put a patient on a medication for pain and tingling, and they fall and hurt themselves due to impaired balance, I have not done my job.

2) Physical therapy can help with neuropathy symptoms.  Physical therapists can help work on balance but also perform desensitization techniques that decrease the discomfort.

3) Another non-medication remedy is electrical stimulation, or TENS.  These electrical units can be put on the painful area to decrease pain signals to the brain.  It has essentially no side effects and is usually covered by insurance.  You can ask your doctor for a prescription for this treatment.

4) OK, let's finally get to medications.  Gabapentin, or neurontin, is the tried and true option, that's been around forever.  It is a good drug that generally works but can have some side effects.  The "newer" version is called Lyrica (I'm sure you have seen it on TV).  It can also have side effects but works quicker and probably better than gabapentin.  Another "newer" drug for neuropathy is Cymbalta (I'm  DEFINITELY sure you have seen it on TV).  It can work well and a new study in a major medical journal recently demonstrated its effectiveness for chemotherapy induced neuropathy.  It is generally well tolerated and usually only needs to be taken once or twice a day (instead of 2 or 3 times a day for gabapentin and Lyrica).  It's important to note that Cymbalta cannot be combined with tamoxifen.   There are some other meds out there as well that work, but the three I discussed above, are what I typically use.  Tricyclic anti-depressants (TCAs) are old drugs that do work, but can have side effects.

Many oncologists will opioids or narcotics (percocet, vicodin, oxycodone, etc).  These drugs can work but are not very specific for neuropathic pain.  In addition, they can have serious side effects like addiction, overdose, and constipation, so I tend to avoid them.

5) Topical medications: You may not know this, but any medication that has a generic version can be made into a cream.  I do this very regularly in my practice.  I will take medications that are typically prescribed orally and turn them into a compound cream.  I have found this to be a tremendously effective treatment with essentially no side effects.  My patients love it!

6) Natural stuff: OK, so everybody always wants to know about "natural" supplements.  B vitamins have been mentioned today on twitter.  For some reason, most of the oncologists I work with recommend it to their patients.  I really don't know where this comes from.  There is very little evidence basis to this treatment.  It is very rare that I see a patient that tells me that it helps.  At this time, there is really nothing in this "natural" category that I can convincingly tell patients that works.  Vitamin E, L-acetyl-carnitine, and glutamate have been studied, with mixed outcomes.  Some of these treatments, may work, I just can't say it convincingly at this point.  I hope we find out more about this in the future, and there are currently ongoing studies that should give us more information.

7) Autonomic symptoms: This is what I categorize as the "weird" symptoms of neuropathy.  These can include dizziness, feeling hot all the time, and bowel and bladder problems.  There usually are potential solutions to all of these symptoms.  One of my favorite patient stories was a woman I saw who always felt intolerably hot when working out or outside in hot weather.  I figured out that this was a neuropathy.  I put her on a low dose of Lyrica and her symptoms resolved.

As you can see, neuropathy can be complicated and there are a number of different possible treatments. The key is to see a specialist (such as a cancer rehab doc like me) that can get to the bottom of the symptoms and find a treatment that works for you.

Opioid Overuse Even in Cancer Patients

My job as a physician is to help cancer patients feel better during and after treatment.  An obvious part of this is managing pain. The mantra for cancer patients has always been, "don't be afraid to treat pain".  This means that we shouldn't hesitate to give strong pain medications like percocet, oxycodone, and morphine to cancer patients since they are truly suffering.  While the suffering of these patients is absolutely correct, that does not necessarily mean that an opioid pain medication is always the right choice.

The real issue from my perspective is that as cancer treatments are improving, more people are surviving cancer.  The number of cancer survivors is rising exponentially (over 13 million in the U.S. today).  Therefore, in many cases, when we treat cancer patients, we are treating patients that will be around for a long, long time.  As opioid pain medications can be addictive and have many side effects, they may not be the right choice for these patients.  For patients that don't have metastatic cancer, I prefer to avoid opioids for pain, except for immediately after surgery.  After that, pain can typically be managed in other ways, including non-pharmacological treatments like physical therapy.  By physicians overprescribing opioid pain medications to cancer patients, these patients may end up on these medications for life.  This is often unnecessary and may be doing patients a great disservice.

http://www.nytimes.com/2013/06/23/sunday-review/profiting-from-pain.html?_r=0

Cancer Survivor Stories: "Hot Body"

The aftermath of cancer is simply not discussed enough.  There are so many potential after-effects of cancer.  Aside from the cancer itself, cancer treatments can cause an array of potentially long lasting effects.  Chemotherapy effects nerves.  Many people know this.  The common symptoms of this problem are numbness, tingling, and pain in the hands and feet.  However, chemotherapy can have other nerve effects.  There is a whole network of nerves in the body called autonomic nerves.  These nerves control a bunch of things we generally don't think about like our heart rate, swallowing, digestion, and our temperature regulation.

A patient came to me complaining that since chemotherapy for breast cancer she has been unable to tolerate heat.  She cannot be outside in hot temperatures.  Moreover, she is very fit, and is now unable to exercise more than 10 minutes without her body becoming uncomfortably overheated.  She described the sensation as "burning" all over her body.  This was not a complaint I had heard before.  However given the burning nature of her symptoms, I immediately felt this was most likely a nerve issue. Therefore I put her on a low dose of a nerve pain medication (pregabalin) and within a few days her symptoms were completely resolved!  Even I was quite surprised.  She was able to go back outside in hot weather and she was able to get back to her usual exercise routine.  She had no side effects from the medication and she continues to take it to this day.

This is just one example of the unusual effects cancer can have on the body.  A cancer rehabilitation specialist can help patients tolerate the effects of cancer and live their lives to the fullest.  I will continue to post more interesting cancer survivor stories.