Helping cancer survivors fight neuropathy

As an oncology nurse, I see more and more people fighting—and winning—the battle against cancer these days thanks to earlier detection and a variety of new treatment approaches. But, like many healthcare professionals, I also see many cancer survivors struggle with the underappreciated long-term health effects often referred to as the “price of survival.”

Cancer-related neuropathy is a common long-term health effect impacting a third of cancer survivors. It can result from the tumor compressing on and/or infiltrating the peripheral nerves as well as from the cancer therapies (surgery, chemotherapy, or radiation).

Neuropathy symptoms include numbness, tingling, weakness, and pain in the extremities; muscle weakness and loss of balance can also occur. For some patients, the symptoms typically begin several weeks or months after initiation of cancer therapy and progress while therapy continues, compromising quality of life and the ability to complete cancer therapy regimen. But for other patients, the neuropathic symptoms continue long after cancer treatment has ended.

So, what do we do to help cancer survivors who go from battling cancer to battling cancer and neuropathy?

Recognize the symptoms early. This is an important first step for both patients and health care professionals. It is easy to overlook neuropathy’s initial symptoms when fighting cancer, but it is important to address the neuropathy and the cancer simultaneously. Cancer survivors should partner with their healthcare providers to:

  • assess the neuropathy symptoms as soon as possible;
  • confirm if the neuropathy is related to the cancer therapy, the cancer itself, or a pre-existing neuropathy (this may influence the development of cancer therapy-related neuropathy); and
  • determine if the cancer therapy regimen should be modified to minimize neuropathy’s debilitating effects.

Provide pain relief and rehabilitative care. Neuropathy can interfere with just about every aspect of daily living, from buttoning a shirt to standing up for an extended period of time to enjoying an outing with family. Chronic neuropathic pain can, in turn, lead to sleep disturbances, anxiety, depression, and cognitive impairments, which further deteriorates quality of life as well as response to treatment. Pain management and rehabilitative care is essential to restoring psychological well being, quality of life, and function.

We are making progress in the fight against cancer as evidenced by the 14 million (and growing) cancer survivors in the U.S. But much more needs to be done to address the long-term health issues—like neuropathy—that cancer survivors and their caregivers are largely unprepared for. More research dollars must be spent on preventing neuropathy, relieving symptoms, improving physical function and quality of life of cancer survivors so that those of us who do research in this area can make a difference. It is not enough that we help patients beat cancer; we have to help them lead healthy and productive lives as cancer survivors.

Cindy Tofthagen is an oncology nurse and assistant professor at the University of South Florida College of Nursing and a post-doctoral fellow at the University of Massachusetts Boston and Dana-Farber Cancer Institute. She serves on The Neuropathy Association’s Neuropathic Pain Management Medical Advisory Council.

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  • houriganterry

    Dear Cindy, Thanks for relieving that lonely feeling. Dialing a phone, peeling an onion, buttons, everything feeling slippery, taking Chaplin-like falls. OK, it’s inconvenient, but it’s not stopping life as
    we knew it. Two months after finishing my Oxaliplatin/5FU, the hand neuropathies continue to
    escalate. I’m an R.N. I do IV homecare, mostly pain control, 5 FU’s, port maintenance, etc.
    Now I cannot feel pulses or place peripheral lines. I am a type 2 dm dx in 2001 with moderate
    numb feet prior to my 10/11 dx of colon ca. In June, when the chemo was d/c’d, I told my onco I had escalating hand problems. “That’s not possible!” “Then I guess I’m wrong!”

    This thing (ca) really has good sides too: less BS now, in my family, friend and work relationships. And after years of “applied” sympathy or empathy, I now know exactly how some of my patients feel. I’ve been thinking – membership dues for this club are high, so why not use all of the facilities? Prior to now I could never see through others’ eyes.
    Observations from the other side…
    Terry

    • http://www.facebook.com/cindy.tofthagen Cindy Tofthagen

      Terry-Thanks for sharing your experience. I have had other patients who didn’t develop any symptoms till after their Oxaliplatin was over as well. Hope your neuropathy eventually improves.

  • houriganterry

    Dear Cindy, Thanks for relieving that lonely feeling. Dialing a phone,
    peeling an onion, buttons, everything feeling slippery, taking
    Chaplin-like falls. OK, it’s inconvenient, but it’s not stopping life
    as

    we knew it. Two months after finishing my Oxaliplatin/5FU, the hand neuropathies continue to

    escalate. I’m an R.N. I do IV homecare, mostly pain control, 5 FU’s, port maintenance, etc.

    Now I cannot feel pulses or place peripheral lines. I am a type 2 dm dx in 2001 with moderate

    numb feet prior to my 10/11 dx of colon ca. In June, when the chemo was
    d/c’d, I told my onco I had escalating hand problems. “That’s not
    possible!” “Then I guess I’m wrong!”

    This thing (ca) really has good sides too: less BS now, in my family,
    friend and work relationships. And after years of “applied” sympathy or
    empathy, I now know exactly how many of my patients feel. I’ve been
    thinking – membership dues for this club are high, so why not use all of
    the facilities? Prior to now I could never see through others’ eyes.

    Observations from the other side…

    Terry

  • http://www.facebook.com/lodewijk.bos Lodewijk Bos

    Dear Cindy,
    Thank you for telling this story. It confirms my feeling that after care is a forgotten aspect of cancer treatment. I was declared cancer free (NHL) almost 6 years ago and left on my own to deal with what was going to happen to my physical en mental system.
    We in Europe rarely use words similar to the USA cancer survivor. And I did not feel like a cancer patient anymore. That’s why I started a blog called “Life of a chemo patient” (www.lodewijkbos.com). Just to tell people what happens to your system once you are supposed to rejoice in the knowledge that your cancer has gone.
    Houriganterry, I have heard the “that’s not possible” so often, that I lost count.
    The only thing I can hope for is that after care will be personalized as well.
    Lodewijk

  • http://www.facebook.com/carol.levy.336 Carol Levy

    This is an important issue but as a chronic intractable pain patient I am always saddened by the fact that when it is cancer people pay attention. Listen, you are writing, neuropathy needs to be addressed, my cancer patients continue to suffer. I appreciate that and your caring for them but I wish the clarion call was Listen my cancer patients suffer from a pain disorder that many chronic pain patients suffer from and we need to address neuropathy as a singular issue, whether related to pain, CRPS, anaesthesia dolorosa, etc. or cancer.
    Carol Levy
    author A PAINED LIFE, a chronic pain journey

    • http://www.facebook.com/cindy.tofthagen Cindy Tofthagen

      Carol,

      Good point. I speak from my own experiences but I totally agree that neuropathy as a whole must be addressed.
      Cindy

  • http://www.facebook.com/cindy.tofthagen Cindy Tofthagen

    Lodewijik-I am saddened, but not surprised to hear of your experience. Kudos for starting a blog so that others realize they are not alone. Survivorship is a recent focus here in the states and we still have a long way to go to provide the care that people need and deserve. Perhaps it will soon become more of a focus in Europe as well. Best wishes!

  • houriganterry

    Hi Lodewijk,

    I haven’t given this much thought until now. It shakes my confidence in my onco, whom I had regarded
    as more insightful and far sighted than the man I interviewed at Sloan Kettering, and others. I’d like to
    be in touch about this again if you don’t mind. Thank you,

    Terry

  • Debbi

    I am 5 years since my breast cancer diagnosis. Treated with surgery, T/C and radiation. It’s 3 1/2 years since my CIPN diagnosis. I had tingling, numbing, and pain with my first infusion. I expected to not feel normal with chemo and didn’t realize it was damaging my nerves at the time. There were other issues to deal with; swollen eyeballs, delayed allergic reaction, neutropena, infection. lymphadema. Complicating my recovery was emergency back surgery between chemo and radiation. All of my attention went to trying to make my numbed leg functional again. After 6 months of PT my therapist stopped treating me because of my wide-spread pain. I was bounced around between my primary care physician, oncologist, and rheumatologist. When all my autoimmune tests came back negative I was put on Neurontin. I asked for a referral to a neurologist who confirmed the CIPN and other nerve damage. It took months for me to get to a therapeutic dose of the medications. I’ve had two antidepressants added to increase pain relief and allow me to sleep. I’ve developed high blood pressure and elevated cholesterol. I’ve refused narcotics because I didn’t want to deal with an addiction on top of everything else. Chronic stress has caused tight muscles and exercising causes more pain. Finally, I have been sent to a Pain Management program–3 hours class for 10 weeks, taught by a psychologist and physical therapist who specialize in chronic pain management. I am also being seen by a physician who specializes in chronic pain. When I asked why I wasn’t sent to this class earlier I was told it was a last resort attempt to treat pain. Our Western medicine places so much emphasis on drugs and surgery. This class is helping me to understand major lifestyle changes I need to make as well as introducing me to some Eastern medicine practices that are effective for reducing stress which in turn reduces pain. Helping me to understand the physiology of pain has made a big difference. I only wish I had these tools when I was undergoing chemo and dealing with my back issues. I have a long way to go. I am reducing my pain medication because I want to participate in my life more and not be in a stupor. Thank you for bringing this long-term side effect to the forefront. Hopefully those treated with chemo in the future will be given clearer instructions for describing their symptoms and will be equipped with more tools for dealing with the lingering side-effects.

    • http://www.facebook.com/cindy.tofthagen Cindy Tofthagen

      Debbi-I am so glad to hear that you are now getting the help you need. You are right, we as oncology healthcare providers need to do a better job of educating patients in the beginning.

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