sponsored a survivors’ forum and scheduled a breakout session on pain. Survivors packed the room, eager to ask the physician panel about the post-treatment pain that affected their quality of life.

The doctors offered few solutions. At one point, a woman at the back of the room began wailing, holding her right arm close to her body as she rocked back and forth. Her husband rubbed her back vigorously and appeared to be in as much pain as she was. The episode lasted a few minutes. When the woman was able to talk, she apologized to the other attendees and explained that ever since her mastectomy six months prior for stage 1 breast cancer, she experienced occasional searing pain that felt like someone had jabbed a hot poker into her armpit.

There was no predicting when it would come or how strong it would be, making her a hostage to her pain, she said. She couldn’t drive, especially with her children in the car, and leaving home for any reason was a challenge. “Why is my pain so much worse than anyone else’s?” she asked.

The panelists explained that she had post-mastectomy pain syndrome (PMPS), a condition that can cause nerve endings to sometimes fire for no reason, creating mild to severe pain. But, they told her, it would get better over time. Probably.

Clearly, this was one of those survivor issues that doctors knew little about. One panelist even admitted the lack of progress in managing pain. That was 14 years ago, and still, not enough progress has been made.

Cancer survivor pain has long been an issue, but it has become a more significant challenge as people with cancer are living longer. For the 20 to 40 percent who experience the pain, causes stem from an assortment of sources and affect different parts of the body, depending on the cancer location and treatment. Surgery, chemotherapy and radiation all can cause pain, which can strike immediately and continue or appear months, even years after treatment ends and can last any length of time.

More and more people who have or had cancer are living well beyond the 10-year mark, once thought to be beyond the maximum. That’s good news, of course, but it also brings to the forefront issues that affect quality of life, such as pain. Many cancer centers have created departments specifically for survivors and symptom management.

Natalie Moryl, M.D., an associate attending physician at one such center, the Survivorship and Supportive Care Division at Memorial Sloan Kettering Cancer Center (MSK) in New York City, says the most common patient complaint involves chemotherapy-induced neuropathy of the feet and hands, followed by pain associated with cancers of the head and neck and post-mastectomy pain.

Treatment for neuropathy pain includes anti-epileptic drugs, anti-seizure medications and antidepressants.

EVOLVING TREATMENTS REDUCE THE RISK OF PAIN

“There are also numerous physical therapy and integrative medicine approaches: massage, acupuncture, physical therapy, exercises, cognitive, behavioral therapy psychological support, counseling and changing the lifestyle to adapt to the new limitations,” Moryl says. Some patients ultimately require opioids to function, she adds.

Efforts to decrease post-treatment pain have led to changes in surgical interventions, chemotherapy and radiation techniques, all of which affect pain. Three years ago, MSK created a Division of Survivorship and Supportive Care, not only to support people who are going through cancer treatment and their caregivers, but also to learn more about the experiences of cancer survivors and the long-term or chronic conditions that may be consequences of successful cancer treatment. The division addresses issues that have emerged as important to quality of life for cancer patients, including pain, fatigue, and emotional and spiritual distress, and encourages thought leaders to do further research into these areas.

Surgical management of breast cancer has changed greatly over the past three decades, Moryl says. More breastconservative surgery and less aggressive mastectomy have been shown to be a safe alternative to earlier approaches, reducing the risk of chronic PMPS in these cancer survivors.

PMPS symptoms include pain and numbness in the chest wall, armpit and arm, she says, as well as a painful pins and needles sensation; unbearable itching; and sharp, severe pain at even a light touch of the skin. The shoulder or area of the surgical scar may also hurt. Most of the 20 to 30 percent of women who have PMPS don’t have severe pain; for those who do, it lessens with time and therapy, she says.

PAIN CONTROL UP FRONT COULD PREVENT THE NEED FOR PHYSICAL THERAPY LATER ON

Overall improvements in treatment have reduced the incidence, frequency and severity of PMPS, Moryl says, allowing surgeons to do less radical, less mutilating surgery. But the risk still exists, and PMPS can be debilitating, she says. Sometimes, women experience pain so severe, they cannot wear a bra or tight clothing.

It’s important for a woman to get adequate pain control as soon as possible, Moryl says, or she will begin to reduce movement to protect her arm and guard her shoulder. That could lead to adhesive capsulitis, also known as frozen shoulder, which compounds the pain of PMPS and creates more problems. With frozen shoulder, any movement in the area can hurt.

The condition is serious, Moryl says: “It needs to be treated as soon as possible and as aggressively as possible with physical therapy, massage and stretching the shoulder to increase the range of motion. With physical therapy, pain from frozen shoulder can resolve completely. You can’t do that if pain is not controlled.”

LACK OF ACCESS TO PAIN MEDICATION CAN HINDER EFFECTIVE TREATMENT

MSK works with patients on symptom management as part of the Division of Survivorship and Supportive Care; other cancer centers have hired palliative care specialists. Beginning the day of diagnosis, these health professionals treat the symptoms, side effects and emotional problems that emerge during the cancer journey to provide the best quality of life possible.

Lauren Shaiova, M.D., director of palliative care at Brookdale University Hospital Medical Center in Brooklyn, New York, describes the hospital as serving a predominantly black population of uninsured or underinsured people.

“They are plagued by poverty, addiction and very low socioeconomic status,” she says.

Opioids remain the most effective pharmaceuticals for treating cancer pain, but recent attitudes about these drugs, as well as increasingly restrictive laws, have created barriers to writing and filling prescriptions. “Because the government has confused cancer pain with addiction, many patients have untreated pain,” Shaiova says. Patients in her care face additional hurdles due to poverty and lack of education, and many have untreated pain, which she sees as the biggest obstacle to a good quality of life.

“They have untreated neuropathies, which is a type of pain,” Shaiova says. “Some patients have uncontrolled shortness of breath that would absolutely be controlled on opioids. Some people have had a pneumonectomy or a lobectomy, so they will always be short of breath. A little bit of morphine, a little teeny bit of an opioid could afford them control of their breathlessness.” But, in the United States, access to morphine is tightly controlled. It can be difficult to find a good pain or palliative care specialist who incorporates opioid pharmacology in their practice but it may be worth the search, Shaiova says.

The reluctance of doctors and pharmacies to use opioids has led to new directions in pharmacology, she says, as well as a greater acceptance of non-pharmacologic treatments. For example, study findings show that physical activity can relieve pain, fatigue, anxiety and depression. Acupuncture, a 3,000-year-old therapy that began in China, appears to help by releasing chemicals in the brain to relieve pain.

Mind-body techniques such as meditation, yoga, music therapy and massage have also shown success in some patients. People who are considering complementary treatments will find a good resource on the Foundation for Peripheral Neuropathy website (foundationforpn.org).

An extensive section on options for coping with pain includes numerous pharmacologic choices, as well as complementary therapies.

Medical marijuana, which has shown success in relieving pain, brings its own access problems, such as finding a physician who — like Shaiova &mdash; has studied its use. “Patients who want to try this approach need to find a physician who knows what they are doing,” she says. “If we assess the pain as being neuropathic, the tetrahydrocannabinol in marijuana that treats pain might be lower, so we need to dial it up for neuropathic pain.”

Shaiova says that pain and addiction intersect at her hospital, creating difficulty because the neighborhood and its socioeconomic level cause doctors to hesitate even more to treat a patient who has cancer. “There’s a lot of prejudice and bias that go into treating pain as well,” she says.

In addition, pharmaceutical companies no longer make many of the opiates. “We used to have 40-milligram methadone tablets. Those stopped 10 years ago, so people who are on large doses have to take the five and 10 milligrams,” Shaiova says, adding that producing smaller doses does not seem like an effective way to control a drug problem.

Virginia Sun, Ph.D., RN, a nurse scientist at City of Hope, a comprehensive cancer center in Duarte, California, began looking at living with long-term pain when her research indicated that almost no one was exploring the issue. “We need to understand the mechanism of pain so we can better develop drugs to treat it and also know how to better support patients as they are living with these pain syndromes,” she says.

Pain can arise from multiple sources, so solutions can be equally complicated. Sun recommends that patients keep notes about symptoms, including about treatments received, which will help providers determine the source of their pain.

Knowing how to talk to providers about pain is also important, Sun says. “We remind [survivors] that if they have a new symptom, if they have gotten worse or if a treatment they have received in the past hasn’t helped much — those are all trigger points to contact their providers,” she says. “Perhaps there needs to be another discussion, another level of assessment to see what else can be done.”

When Sun began investigating pain management in 2012, she says, there was little research in the area — and none related to the patient’s perspective about living with pain syndromes, such as peripheral neuropathy (loss of feeling in the hands and feet). Her research focused on chemotherapy-induced peripheral neuropathy (CIPN) and what it is like to live with the syndrome’s challenges, such as falling and loss of sensation to temperature.

Developing more effective treatments means conducting studies to better understand the mechanisms of nerve damage and pain, Sun says. She theorizes that if physicians understood the impact of pain on a person’s life, they would approach treatment more carefully.

Articles

Feature

Doctors must do more to understand the source of pain and how to prevent and treat it.

The Quest to End Survivor Pain

IN THE FALL OF 2009, I was recruited to play baseball at Holy Cross College in Notre Dame, Indiana. But a couple of years in, things began to change. My attitude shifted; I became both disinterested and irritable. I lost my sense of humor, and my personal relationships suffered. Within six months, I quit the baseball team, and then flunked out of school. In no time, it seemed, I lost everything I had worked so hard for.

After I left school, my parents forced me to see a therapist to check for depression. My personality changes made no sense to me, and I resisted being treated for a mental illness. I got a job at a factory and watched from home as my friends graduated and started their careers.

Later, when the headaches started, my doctor wasn’t overly concerned. After all, it was a stressful time in my life — headaches would be a natural physical reaction. Eventually, when my vision was affected and I began experiencing partial paralysis, it was clear something was wrong. After a CT scan revealed a golf ball-size tumor on my brain, I was rushed into surgery. A week later, I was diagnosed with glioblastoma, an aggressive form of brain cancer that was lethal in nearly every case. I had, at most, six months to live. I was 22.

My oncologist recommended that I immediately begin chemotherapy and radiation, measures that might prolong my life for a while. My parents actually told this doctor — a really good doctor who wanted to start treatment immediately &mdash; that they needed time to process and look at alternatives.

  Taking time off work, my parents began the tough task of researching any hospital or clinical team that was investigating my type of cancer. They weren’t looking for more time; they wanted a cure. They worked the phones — Duke, Miami, a host of other places &mdash; before choosing the University of Michigan (U-M). Its Brain Tumor Program had a promising clinical trial.

With my oncologist’s approval, I underwent grueling tests to see if I was a suitable candidate for the trial. I was accepted into DCVax, an immunotherapy treatment program that used my own cells to fight the cancer and keep it away forever.

For two years, my oncologist worked alongside my clinical trial team at U-M. After every treatment and every surgery, reports and emails were exchanged to bring each other up to speed on my progress. The immunotherapy and six surgeries were done at U-M, and my chemotherapy and radiation were done near my home. The process worked well — so well that when I made it to the end of the clinical trial, no one quite knew what to do next. People rarely survived this, and yet my tumor was gone. The clinical trial worked exactly the way the doctors intended.

Now, five years later, I am officially cancer-free and a college graduate. My doctors aren’t as worried anymore about recurrence. I will soon be working full time with Riverbend Cancer Services in South Bend, Indiana, to help clients locate alternative cancer treatments around the country.

After being diagnosed with glioblastoma, experimental immunotherapy saved his life.

How One Person Beat Cancer by Participating in a Clinical Trial

People who have cancer spend a lot of time with their medical team members, especially nurses, during long and frequent hours of treatment. It is only natural to develop relationships with some of them. Some of these relationships might cross the line between patient/provider and friend, and some may last long after treatment ends. Connecting on social media seems like an easy way to keep in touch with staff that cared for you during a tough time in your life.

Social media has become pervasive in our culture. Posts, tweets, videos — that is how many people now communicate with one another. Social media refers to any web-based or mobile technology, such as Facebook, YouTube, Snapchat, Instagram, Vimeo, LinkedIn, Twitter and CaringBridge. But beware &mdash; some pitfalls could bring negative consequences for both you and your nurse.

Use of social media can easily violate patient confidentiality. The National Council of State Boards of Nursing social media guidelines state that “it is imperative not to mention patients by name or provide any information or details that could possibly identify them in order to protect patients’ right to privacy.” Nurses have a legal and ethical responsibility to maintain patient privacy and confidentiality.

Disclosure is often unintentional. Posts are not private. Someone can simply take a screenshot of the information and send it on or upload it to another place on the internet. Posts never truly disappear. Even if a post is deleted, it may still live somewhere on a server and could be discovered in a court of law. To protect the privacy of your own information, as well as your friendly nurse’s nursing license, consider the downstream effects.

WHAT IF… you post that you had a great weekend with family visiting but are now feeling really tired? Your nurse might read that and wonder if the fatigue is from overactivity or related to anemia or even a sign of recurrence. Is the nurse legally obligated to report seeing something concerning about your health? What if a post reveals a behavior that could pose a health risk — for example, a picture of you drinking wine, and the nurse knows you are on medication that should not be taken with alcohol. Nurses have professional, legal and ethical responsibilities to consider. Now that they have this piece of information, what do they do with it?

WHAT IF… you come back to your place of treatment to celebrate your cancerversary and it becomes a photo op? One nurse takes a picture with you and posts it with the caption “This is why I became a nurse.” You may not want everyone to know about this cancer journey. You have a right to decide what is shared and with whom.

WHAT IF… your nurse friend posts something revealing about your condition? It could have an effect on your future employment. There is not supposed to be discrimination in the workplace for survivors, but in reality, it does occur. If a nurse posts a picture of you on a social media account, it might show up in an employment search about you many years later. If you are concerned about this, you should state clearly that you do not want photos of you with your nurses or care team posted on social media.

The scenarios above could result in a Health Insurance Portability and Accountability Act of 1996 violation and disciplinary action by the board of nursing, as well as the nurse’s employer. Most organizations have guidelines about taking photos of any person who works at their facility or received any services there. A written formal consent is usually required, and it needs to be obtained from everyone in the photo. Another patient in the background or a characteristic — say, a tattooed arm &mdash; that could be even remotely linked to another patient could create a messy legal situation.

So, how do you avoid potential boundary crossings on social media? Err on the side of caution. Don’t put your nurse friends in the position of endangering their careers. For your benefit, as well as theirs, it is best to avoid interacting with them on social media.

Beware of the possible privacy pitfalls of befriending your nurse on social media.

Think Twice About Friending Your Nurse on Social Media

Jean Lehmann of Fort Collins, Colorado, was looking forward to the date of her last chemotherapy treatment. She hoped that would mark the end of her breast cancer experience, and she could move on with her life.

Nothing could have been further from what happened.

The last treatment was the hardest, leaving Lehmann feeling sicker than ever before. But, she discovered, there was a limit to the post-chemotherapy support she would get from her medical doctors. “I had amazing health care, but it comes to an end,” Lehmann says. “The doctors have done what they can do. I first had this sense that I’m going to be done, and I’m going to be well, and I’m going to be me again — but that’s not always the case. I realized, if I am going to try to return to who I am &mdash; physically, mentally, spiritually, intellectually &mdash; I have to work on this.”

A friend recommended a free support group called FIERCE: Functional & Fit, Independent, Energized, Restored, Confident & Empowered, led by Alene Nitzky, Ph.D., RN, OCN. An oncology nurse, Nitzky is also an exercise trainer certified by the American College of Sports Medicine and the American Cancer Society. She uses her unique blend of expertise to help survivors on the road to wellness.

“People get through treatment and don’t have an idea of how they’re going to feel,” Nitzky says. “They don’t have an idea of what’s realistic for themselves. We talk about what reasonable goals might be. We set some time goals — six months, a year. We talk about being flexible with that.”

FIERCE is no ordinary support group. Members meet in a donated space in a gym, the Raintree Athletic Club in Fort Collins. This appeals to Lehmann, who would rather not spend time in a medical setting now that she has completed treatment. She also appreciates being among survivors who do not dwell on their illness but understand her issues.

“We don’t really talk about having cancer,” Lehmann says. “I want to be Jean first. But I’m with people who — if something comes up &mdash; they all get it. Because they’ve been there.”

Over the past three years, the FIERCE program has evolved beyond stretches and exercises to become a tasting menu of fitness techniques. Nitzky brings in speakers to introduce survivors to tai chi, biofeedback, qi gong, Pilates and yoga — each offering a different approach to physical recovery from the effects of cancer or its treatment &mdash; as well as a nutritionist to discuss diet.

“People might benefit from talk support groups for a little while, but they need to move on, have some normalcy in their lives and expand their horizons,” Nitzky says. “Our group also helps with the cognitive aspects [of recovery]. Survivors might have brain fog, feel anxious or feel like they’re not thinking clearly. Interaction, exercise and learning new things is so good for them.”

Nitzky takes a holistic perspective, incorporating relaxation techniques and advice on dealing with aftereffects and anxiety. She tries to personalize topics and exercises to the participants, based on their requests and their conditions.

As a certified cancer exercise trainer, Nitzky understands survivors’ specific needs. “For example, if a person has low platelets, you don’t want them to do any impact activities,” she says. “If their immune system is weak, you don’t want them around a lot of other people. If they have lymphedema or they’re at risk for lymphedema, you have to be careful about the kinds of exercises you do, so you don’t trigger that.”

Cancer treatment affects survivors’ abilities, so she considers whether a participant has recently finished radiation or had surgery, for example. She realizes that they may have lost muscle mass or developed anemia after chemotherapy, and their bone marrow may not have recovered. “You have to be careful about how hard people push themselves, because you don’t want to deplete their muscles and their heart of oxygen. You want to make sure they ease into it,” Nitzky says.

Jane Kinney, who is five years past her surgery for stage 4 thyroid cancer, attended the FIERCE support group and found that expertise valuable. Nitzky identified medical issues that arose after Kinney’s surgery, during which 59 lymph nodes were removed. “One of my cheeks would swell way up. The surgeon basically just dismissed it,” Kinney says. “I didn’t know, but it was just lymphedema. Alene was the one who identified it. She knew what it was right away.

“I also would sometimes have pain all over my body,” Kinney says.” I thought, ‘That’s just the way it is.’ But when I mentioned it to Alene, [she] suggested that I might need more vitamin D. She told me to talk to my doctors, and I did, and they gave me a pretty high dose of vitamin D. Alene made my quality of life so much better.”

FIERCE grew out of Nitzky’s health coaching business, Cancer Harbors, which she established four years ago as a way to use her knowledge and experience to benefit people with cancer. Before striking out on her own, Nitzky had worked as an oncology nurse and, before that, as a personal trainer and exercise educator.

“As a nurse, I was hanging bags of chemo[therapy] most of the time and feeling like I wasn’t really using all my skills. I was listening to the patients while they were sitting in their chairs, and they have all these questions, all these needs that aren’t being addressed,” she said.

That led to Nitzky’s aha moment: “I have a background in health and wellness, and I had worked with people who had serious health conditions. As I listened, I realized, ‘I would be able to serve their needs. I would be able to work with survivors, because I have a background in recreation, health, exercise and oncology. I can put all this together. It makes sense. Everything in my life has pointed to this.’”

And so Cancer Harbors was born. In this six-month skill-building program for self care, Nitzky coaches survivors to be advocates for their own health. She helps clients understand what to ask providers and encourages them to gain the confidence to ask those questions.

“A lot of people go in to the doctor’s office thinking, ‘The doctor is the expert, and I really don’t know anything; this is like a different language to me,’” Nitzky says. “But really, though the doctor is the expert on medicine, the patients are the experts on themselves. You have to be able to go in with this attitude that, ‘OK, they have something to bring to this relationship, and I have something to bring to this relationship, and our shared purpose is to get me as well as possible.’”

Through the program, survivors improve their cancer literacy, learn about the best online sources for care, and find out what products and services are available. Nitzky also helps survivors set goals, define their values and understand what is most important to them.

Body

Alene Nitzky helps survivors transition from the end of treatment to the beginning of wellness.

Establishing a Safe Harbor for Survivors

By SAKETH GUNTUPALLI, M.D., FACS, FACOG, AND MARYANN KARINCH

What is the impact of gynecological or reproductive cancers on a woman’s intimate relationships? The sensitive and oft-neglected subject of sexual intimacy receives the spotlight treatment in "Sex and Cancer: Intimacy, Romance, and Love After Diagnosis and Treatment."

Many more women are surviving gynecologic cancers than ever before. This book helps readers mitigate outcomes and overcome challenges of sexual dysfunction after a cancer diagnosis; reassess the priorities in an intimate relationship to support her struggle, healing and libido; and learn to interact with the professionals tasked with saving lives and enhancing those areas affected by cancer diagnosis and treatment. Written by a survivor of endometrial cancer and her gynecological oncologist, the book features personal stories from survivors that offer insight, comfort and suggestions for addressing questions about intimacy and sexual function that are often left unexpressed.

"Surviving the Storm" is a book for people who want to tell the story of how they have been affected by cancer. It provides prompts to guide survivors in thinking about their experience, and how to tell their unique story of surviving or living with cancer. It helps them discover their authentic voice. The author, Cheryl Krauter, integrated her experience as an existential humanistic psychotherapist with her personal journey as a breast cancer survivor in shaping her book. A contemplative perspective inspires readers to explore themes of love, belonging and personal meaning related to their cancer journey. Personal stories of cancer survivors are highlighted, and poetry and writings related to cancer are interspersed throughout the book.

This young adult book, based on a true story, tells the tale of a 12-yearold girl named Maddie, who has a quirky sense of humor and loves making her classmates laugh by slapping on fake mustaches. When Maddie starts tripping as she walks and her hand starts curling up at her side, her mother takes her to the doctor, who confirms Maddie has a brain tumor. In an instant, her world is turned upside down. With scary medical tests and surgery ahead of her, as well as typical sixth-grade problems, Maddie uses her friendliness, positive attitude, imagination and her fake mustaches to battle her challenges. She even gets an unexpected surprise when she receives hundreds of photos from friends, family members, and even complete strangers wearing fake mustaches to cheer her on. Sensitively told, Mustaches for Maddie highlights the power of humor, hope and love to strengthen the spirit and help people cope with the trials that cancer brings.

Winter 2018

The Quest to End Survivor Pain

How One Person Beat Cancer by Participating in a Clinical Trial

Think Twice About Friending Your Nurse on Social Media

Establishing a Safe Harbor for Survivors

Book Corner