August 2017 Ask the Expert: Neuropathy

August 1, 2017

Have you experienced numbness, pain, burning, tingling or loss of feeling in your hands or feet after breast cancer treatment? You’re not alone. This condition is called neuropathy and can be a side effect of some breast cancer treatments. Whether you have early-stage or metastatic breast cancer, neuropathy can have a serious impact on your quality of life.

In August, Living Beyond Breast Cancer expert Janet L. Abrahm, MD, FACP, FAAHPM, answered your questions about neuropathy and breast cancer. She addressed issues like what causes neuropathy, how long it can last and how to treat and manage it.

 

Remember: we cannot provide diagnoses, medical consultations or specific treatment recommendations. This service is designed for educational and informational purposes only. The information is general in nature. For specific healthcare questions or concerns, consult your healthcare provider because treatment varies with individual circumstances. The content is not intended in any way to substitute for professional counseling or medical advice.

 

How do I know if I have neuropathy, or if something else is going on?

Neuropathy is the medical term for damage to a nerve. There can be many causes of that damage that are not caused by cancer, including having diabetes, drinking too much alcohol for a long period of time, and having physical injuries to the nerves, like when a disc herniates.

If you mean how do you know if the numbness or tingling or shooting pain you feel in your hands and feet comes from the chemotherapy, the most important thing to do is ask your oncology team. Sometimes it is just the chemotherapy, but sometimes there can be another cause of damage to your nerves that causes numbness/tingling or shooting pains in your hands and feet. Your team will know whether you need more tests to figure it out. They may ask for a consult for a neurologist, who is a specialist in injuries/diseases of nerves.

With neuropathy, is it possible to feel tingling in other parts of the body besides the hands and feet?

The neuropathy that comes from chemotherapy is only in the hands and feet. But damage to nerves can occur anywhere a nerve goes in the body. Surgery, for example, damages nerves and as they heal, or even later, you may feel numbness/tingling or shooting pains over the scar, or around where the port was placed. And if your tumor invades a nerve, or scar tissue after surgery or radiation treatment traps a nerve, you can have neuropathy in the area of that nerve’s territory, like part of the shoulder, or the upper arm, or your armpit. 

As I get farther away from my last chemo treatment, will my neuropathy get better?

For about half of the people, the neuropathy does get better over about 6 months. For a third it gets worse first, and then gets better. But about 25 percent of people still have problems 5 or 6 years out. We don’t have much data longer than that, but I imagine it could be troublesome for many survivors. It depends on how many treatment cycles you’ve had of the drugs that injure nerves, and the cumulative amount of those drug you’ve received.

Is it possible that I've developed neuropathy in my feet 10 years after treatment?

It’s more likely that the nerves didn’t recover fully from the damage from the treatment, and that something else brought on the symptoms of neuropathy 10 years later. I’d let my primary care physician (PCP) or oncology team know, as they’ll want to look into it further. 

What is the percentage of survivors for whom neuropathy doesn't go away? I have tried everything but I still have so much pain at night.

I’m sorry to hear that! About 25 percent of people still have problems 5 or 6 years out. We don’t have much data longer than that, but I imagine it could be troublesome for many survivors. It depends on how many treatment cycles you’ve had of the drugs that injure nerves, and the cumulative amount of those drug you’ve received. If you haven’t already seen a palliative care specialist, or a neurologist who specializes in neuropathic pain, I’d highly recommend that you do that.

Do doctors use certain tests to diagnose neuropathy?

Mostly, no. A deficiency of Vitamin B12 can cause a very specific type of neuropathy, so they may check the blood level of B12. And not having enough potassium, calcium, magnesium or B vitamins can make the neuropathy worse. But the kind of neuropathy caused by chemotherapy can be diagnosed by your symptoms (burning, tingling, shooting, “pins and needles,” numbness) and a physical examination, and no other tests are needed. This kind of diagnosis is called a “clinical diagnosis.”

How can a doctor tell the difference between neuropathy and arthritis?

Arthritis is an inflammation of the joints, not of the nerves. People with arthritis typically have stiffness when they get up in the morning because their joints in their hips, shoulders, wrists or fingers don’t have enough lubrication yet. They can have limitation of motion throughout the day if their joints are damaged by the arthritis and don’t move normally. In some cases, the doctor can see the arthritic changes in the joints during a physical examination. The pain of arthritis is aching and sharp, not the burning, tingling, shooting, “pins and needles,” or numbness that nerve damage (neuropathy) causes. And arthritis pain usually responds to over-the-counter pain medications, for example: acetaminophen (such as Tylenol), ibuprofen (such as Motrin) or naproxen (such as Aleve). 

Are certain treatments, certain doses, or certain lengths of treatment time more likely to lead to neuropathy?

Yes, certain treatments are more likely to cause neuropathy. Surgery can cause neuropathy in the skin where the surgery was done, especially surgery of the breast, the wall of the chest (as when a port-a-cath is placed) or a lung biopsy. Radiation to tissues that include nerves, like the area above the clavicle, or collarbone, (the supraclavicular fossa) can cause neuropathy in those nerves. That area may need to be treated to prevent breast cancer recurrence in the lymph nodes there or to treat breast cancer that has spread to those nodes, and neuropathy might result.

But the most common treatments that cause neuropathy are the chemotherapy treatments for breast cancer that injure nerves, like cisplatin (Platinol), carboplatin (Paraplatin), oxaliplatin (Eloxatin), vincristine (Marqibo) and paclitaxel (Taxol). It depends on how many treatment cycles you’ve had of these drugs and the total amount of those drug you’ve received.

What can I do to manage my neuropathy?

There are many ways to manage your neuropathy. One is to be sure you protect your hands and feet from injury, such as from excess heat or sharp objects. If you have moderate to severe neuropathy of your feet, consider starting to see a podiatrist to have your feet examined regularly for problems. If you get your nails done, let your manicurist or pedicurist know to be especially careful with sharp tools and the temperature of foot baths. Wear shoes that fit well and don’t rub or cause blisters.

The medications gabapentin (Neurontin) and pregabalin (Lyrica) are helpful for neuropathic pain from many causes (such as a shingles infection), but are not helpful for the neuropathic pain caused by chemotherapy drugs. Duloxetine (Cymbalta), an antidepressant, may be helpful for that. Your oncology team can gradually increase the medication to a dose that works for you, or the palliative care team can help with this. A machine called “the scrambler” has been reported to relieve the neuropathic pain caused by chemotherapy, but more studies are needed. There is no evidence at present that acupuncture, hypnosis or massage provide relief for neuropathic pain induced by chemotherapy. If you are not vitamin deficient, vitamin supplements are not helpful.

My neuropathy seems worse when I am tired or stressed. Is that common?

Absolutely. Many people find pain of any sort is worse when they are tired or stressed.

What do the different “grades” of neuropathy mean? Are they treated differently?

The grades of neuropathy mean how bad the nerve damage is. They are not treated differently, but if the neuropathy is severe enough, usually grade 3, the oncologist is likely to decrease the dose of the drug causing them, or stop that drug altogether. If a patient has grade 2 neuropathy and it is interfering with the way they function, the oncologist also is likely to decrease the dose of the drug.

Each chemotherapy “protocol” gives the oncologist exact guidelines as to when to consider either lowering the dose or stopping the drug altogether. If you are experiencing these symptoms it is important to tell your oncology team so that they can make appropriate adjustments to your regimen.

Are there certain accommodations you would recommend I ask for at work to make my neuropathy less of a problem while I’m working?

I would ask your oncologist for a referral to physical and occupational therapists. They can provide suggestions on whether there are any work accommodations that can help you. 

Does neuropathy have any relationship to recurrence? Like if I have bad neuropathy, am I more likely (or less likely) to have a recurrence?

No, you are not more or less likely to have a recurrence if you have neuropathy.

What is post-mastectomy pain syndrome? Is it different from neuropathy and is it treated differently?

Post-mastectomy pain syndrome is a type of neuropathy. 

As I wrote in my 2014 book, A Physician’s Guide to Pain and Symptom Management in Cancer Patients:

“The term post-mastectomy syndrome is something of a misnomer because it can occur in women who undergo any type of breast surgery, from lumpectomy to radical mastectomy. It is a common problem: 4 to 10 percent of women who undergo breast surgery develop this syndrome. The pain can appear immediately or as late as six months after the surgery. A patient with post-mastectomy syndrome feels a burning, constricting sensation in the back of her arm, her armpit, and the front of the chest in the area where she has lost sensation because of the surgery. … Post-mastectomy pain is caused by a neuroma of the intercostobrachial nerve ( a branch of T1,2) which was cut during surgery. There is often an associated trigger point (a place where the pain can be reproduced by touching that part of the skin) in the armpit or chest.”

It is best treated by placing one or more lidocaine-infused dressings (such as a Lidoderm patch) over the area of burning skin. In more severe cases, it may also be necessary to take one of the medications used for neuropathies, like gabapentin. 

Is neuropathy treated differently in people with metastatic breast cancer?

No, it is treated in the same way in people who’ve been cured of breast cancer many years ago, those who are still undergoing adjuvant therapy, and those who have metastatic breast cancer. 

There are several different treatments for different people, including Lidoderm patches and drugs such as gabapentin, pregabalin and others. Experimental therapies include the use of a “scrambler” device to relieve neuropathic pain, but more studies are needed.

Are certain people more likely to get neuropathy?

Some people have medical conditions that have injured their nerves, but not so badly that they have noticed the injury yet. When these people then have the added injury of chemotherapy, they are likely to have noticeable symptoms from the twice-injured nerves. The medical conditions that can injure nerves include diabetes mellitus, also called “sugar diabetes,” or drinking a lot of alcohol. People who have diseases of their blood vessels, causing narrowing of the arteries, can also be more vulnerable to neuropathy.

There are ongoing studies about whether your genetic profile determines whether you are likely to get neuropathy. We know you inherit ways of metabolizing, or breaking down, the chemotherapy, and that may predict whether or not you will get neuropathy. At the present time, though, there is no definite genetic profile that predicts who will get neuropathy.

Is there anything I can do to prevent neuropathy?

One study has shown that using a machine that continuously makes your arms and legs cool while you get paclitaxel (Taxol) may prevent neuropathy. These machines are not yet generally available but if the study results are confirmed, they may be in the future.

If you have diabetes, keeping your blood sugar level under control is likely to help prevent neuropathy. Ask your oncologist whether drinking alcohol is recommended while you get treatment with a chemotherapy medicine that causes neuropathy.

A comprehensive review of natural and complementary therapies for neuropathy caused by chemotherapy was published in 2016. The researchers reviewed over 1,400 publications and found that only 12 of these reported the results of the “gold standard” kind of study, a randomized controlled trial (RCT). One of the RCTs found that there is early evidence that vitamin E might be effective in preventing neuropathy caused by cisplatin (Platinol), but another RCT did not find that vitamin E prevented neuropathy caused by cisplatin or oxaliplatin (Eloxatin). A number of other treatments and techniques have been tried to prevent neuropathy, but none has proven effective in randomized controlled trials yet.  

Does having neuropathy make it more likely that I’ll develop other health problems?

Having neuropathy means that you can’t feel things correctly, so you are susceptible to injuring your hands or feet without knowing it. It’s important to be very careful about heat, cuts, and pressure, from shoes, for example. You also need to carefully monitor your hands and feet for infections or other problems and have them treated promptly. You might even need to invest in manicures and pedicures if that would help, or see a podiatrist, a foot doctor, regularly. 

If your muscles have been affected, and you cannot easily “feel” your feet, you may not have good balance and are at risk of falling. Ask your oncologist if it would help if you worked with a physical or occupational therapist to strengthen yourself and learn techniques or use devices to improve your balance and endurance.

Can complementary therapies like yoga, acupuncture or meditation help with neuropathy?

A comprehensive review of natural and complementary therapies for neuropathy caused by chemotherapy was published in 2016. The researchers reviewed over 1,400 publications and found that only 12 of these reported the results of the “gold standard” kind of study, a randomized controlled trial (RCT). One of these was a study of electro-acupuncture, which was not effective. No articles on yoga or meditation were found among these over 1,400 publications, so it is not possible to say whether or not they would be effective. 

Are there any clinical trials looking at neuropathy in people with breast cancer?

At the moment, the National Institues of Health website lists 60 studies of neuropathy in patients with breast cancer, but many of these are not enrolling patients now, or are looking at how to predict who will get it, or asking other questions. Only 11 of the studies that are enrolling patients involve prevention or treatment of neuropathy. There are several studies of acupuncture or electro-acupuncture, cryotherapy, which involves cooling of the limbs, exercise, and vitamins or omega-3. If you are interested in enrolling in an NIH-sponsored study, go to that website and search for “cancer peripheral neuropathy.”

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