Ask the Expert: Neuropathy
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.
Living Beyond Breast Cancer expert Janet L. Abrahm, MD, FACP, FAAHPM, answers your questions about neuropathy and breast cancer. She addresses the causes of neuropathy, how long it can last, and how to treat and manage it.
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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.
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.
For about half of people, neuropathy does get better over about 6 months. For a third it gets worse first, and then gets better. But about 50 percent of people still have problems 5 or 6 years out, including increased risk of falls. Rehabilitation including balance training can be very helpful to prevent those falls. 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 drugs you’ve received.
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.
I’m sorry to hear that! About 50 percent of people still have problems 5 or 6 years out, including increased risk of falls. Rehabilitation including balance training can be very helpful to prevent those falls. 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.
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.
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).
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 drugs you’ve received.
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.
Absolutely. Many people find pain of any sort is worse when they are tired or stressed.
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.
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.
No, you are not more or less likely to have a recurrence if you have neuropathy.
Post-mastectomy pain syndrome is a type of neuropathy.
As I wrote in my soon-to-be published 2022 book, Comprehensive Guide to Supportive and Palliative Care in Patients with Cancer:
“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 axilla or anterior chest wall.”
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 or pregabalin.
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.
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. So can people who are overweight or obese, or do not do much moderate or vigorous physical activity. Taxanes are particularly hard for them to tolerate.
Ask your oncologist to check your Vitamin D levels, if they haven’t been checked already. People who are deficient in Vitamin D are more likely to get neuropathy from chemotherapy.
There are ongoing studies about whether your genetic profile determines whether you are likely to get neuropathy. We know people 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.
Your oncology team can use machines or gloves/boots to make your hands and feet cool while you get paclitaxel (Taxol), which does prevent or lessen neuropathy.
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. Ask also if you’re a candidate for referral to physical therapy, who can recommend a moderate to vigorous exercise regimen for you if you are receiving platinum, vinca alkaloids, or a taxane, especially if you’re older.
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 proved effective in randomized controlled trials yet.
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.
A comprehensive review of natural and complementary therapies for neuropathy caused by chemotherapy was published in 2016, and there have been no updates since suggesting that either of these therapies would help patients with neuropathy caused by chemotherapy. 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.
As of May 2022, the National Institues of Health website lists 115 studies of neuropathy in patients with breast cancer, but only 25 are enrolling patients now, or are looking at how to predict who will get it, or asking other questions. Many 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.”