In my book, “New Beginnings: The Triumphs of 120 Cancer Survivors,” I endeavor to capture the individual and the psychological transitions survivors navigate through photographs and vignettes about their journeys. It is not about the diseases we call cancer. In my interviews with 120 survivors, I have identified four phases of cancer: diagnosis, treatment, the silent phases and, finally, the acceptance that there will be a new beginning — a new normal.

Four decades ago, there were three million cancer survivors living in America. As of March 2015, there are more than 14 million, with the number growing every day. About 65 percent of cancer survivors have lived at least five years since receiving their diagnosis, 40 percent have lived 10 years or more, and nearly 10 percent have lived 25 years or longer. This all means that there is a steadily growing population of survivors who are asking the question “What now?”

Cancer forces people to put their lives on hold. It can cause physical and emotional pain and result in lasting problems. It may even end in death. But for many people, it means a new perspective on life. It is as if their senses become more finely tuned by facing their own mortality. Their lives take on new meaning.

"When I was buried under a blanket, miserable and sick, I developed my mantra and wallpapered my bedroom with it: ‘Everything that happens to you, whether you like it or not, becomes a part of your life. You must live your life and be the best you can be every step of the way.’ That and the music got me through treatment and out of bed. That was my anchor." - Matthew Zachary, founder and CEO of Stupid Cancer, age 21

"My angel (another patient who had comforted her during chemo) had changed my life forever. I had a duty to teach what she had taught me: listen to others and not to my pain; be kind, not selfish. Everyone is battling something. I realized that I’m not a lone soldier." - Tiffany Grayley, age 22

When I was diagnosed with cancer, I was devastated. My first reaction was fear, which was soon followed by a crushing sense of feeling all alone. I felt alienated and estranged from everyone. It was like I was living in a different universe. Susan Sontag described this feeling well when she wrote that the sick person is transported to another country, separate and distinct from the land of the healthy. And, I was so angry. This became my new normal.

Then, after my treatment concluded, I was surprised to find myself experiencing an anomic terror when my oncologist said, “Ok, you’re good to go. Aren’t you glad you won’t have to see me so frequently?” My first thought: “What am I going to do?” I couldn’t get over that empty feeling.

"Cancer shattered my illusion that I have a long life ahead of me. I may. I may not. I can’t control how long I live, but I can control how I live. One of my mottoes has become ‘control the controllable and leave the uncontrollable to God.’ I don’t get to determine the number of my days, but I can determine the quality of the days given to me." - Kay Warren

Over time, I began asking other survivors about how they felt when their treatment was finished, and many acknowledged similar feelings. One survivor, Kim Linz, even gave a name to it, labeling it the ”silent phase” of cancer, when the frenetic flurry of treatments and doctors’ appointments is replaced with a gaping silence and an uncertainty about what the future holds.

At this point, survivors are left to their own resources as they attempt to move forward. Family and friends expect the survivor to move on. But, as Dr. Thomas R. Frieden, director of the Centers for Disease Control and Prevention, reflects, “Having cancer may be the first stage, really, in the rest of your life.” Ellen Stovall, a senior health policy adviser for the National Coalition for Cancer Survivorship, has written: “With cancer, it’s not ‘death or cure’ anymore … Learning to live with cancer is a very different mindset, and many need to figure out how.”

Adjusting to my new state took some time and the help of not only a team of sensitive physicians, but also that of a gifted therapist. I became aware of what really mattered. I focused on what I loved about my work, and tried to eliminate tasks I disliked. I consciously strove to make my family and friends a bigger part of my life. I became a better husband, father and friend.

Cancer became, and many survivors concur, a gift, a catalyst for accepting my limitations, my mortality, and my strengths. Cancer gave me the opportunity for a new beginning. I wanted to help others, as I myself had been helped. I wanted to create the kind of book I wish had existed when I was diagnosed.

"Life is about moments. We have started to live day-by-day, hour-by- hour, and sometimes second by second. And when you sit there with those seconds seemingly so long, you realize how many of them you have. We have the luxury of seeing so many little gifts that other people don’t see. The smell of my daughter’s hair in the morning is one such gift. My favorite daily gift is getting to snuggle in the morning. There is a constant reminder that she’s borrowed. She’s not ours." - Bridget Colby, mother of Sophia (diagnosed at age 15 months)

As I spoke with the survivors in “New Beginnings,” I discovered an intriguing combination of fragility and inner strength. They were fragile in that they had a realistic assessment of what they had lost, and of the obstacles that lay ahead. They had undergone a sometimes painful process of self-examination, honestly facing up to their shortcomings and mistakes, while determining to do better. Their strength was based on a belief that they could overcome the obstacles, and that their fate was in their own hands. They did not necessarily think of themselves as being cured; but they felt that they were going to do everything possible to make the most out of whatever time they had left.

For everyone in this book, there is a sense of gratitude, the understanding that all is a gift.

Cancer makes us realize that each day is meant to be appreciated.

The experience of diagnosis and treatment had woken them up, and many were willing, even eager, to change their lives. Some changed careers; some reordered their priorities; others simply reaffirmed that the path they had chosen was right for them. They changed in other ways as well, altering their diets and taking up exercise. They explored ways to give back to the “cancer community” by raising money, visiting treatment centers, founding survivor organizations and reaching out to others who had been diagnosed. Some even felt they were living for those they had known who had died. Their motivation was the belief that they could make a difference.

A good friend recently said to me: “You know, I don’t want to be diagnosed with cancer, but I do wish that I could have that experience of ‘having survived’ so I could make changes in my life.”

Perhaps cancer survivors can demonstrate the way for us all to a better life, to a life well lived.

“New Beginnings: The Triumphs of 120 Cancer Survivors,” a project by and for cancer survivors, is Bill Aron’s third book. It is a collection of narratives and photographic portraits of men, women and families of children. Though they vary in age, ethnicity and diagnosis, they all share the ability to turn a diagnosis of cancer into a positive force in their lives. Aron first gained international recognition for his first book, “From the Corners of the Earth,” which chronicles the Jewish communities of the former Soviet Union, Cuba, Jerusalem, New York and Los Angeles, and was published by The Jewish Publication Society. Algonquin Books published a second volume of his work, “Shalom Y’all: Images of Jewish Life in the American South.” Aron lives in Los Angeles with his wife and two sons.

Articles

Feature

Photographer and cancer survivor chronicles journeys of affirmation &mdash; including his own.

What Do 120 Cancer Survivors Have in Common?

It all began as a typical afternoon when I was in my office, working as a medical transcriptionist at a local neurology practice. I was organizing a few patient charts that had just been brought in by the last few neurologists as they headed out for the day. What I was doing was not physically taxing in any way, and I was not feeling particularly stressed. But in that moment, I became unaccountably aware of my heart — it suddenly seemed to be racing uncontrollably, pounding and galloping in my chest. I immediately sat down, breathed deeply, and waited for the sensation to stop. Fortunately, it quickly did, and I pushed the experience out of my mind.

But only a day or so later, as I was walking on my treadmill at home, I realized that strangely enough, my left arm was repeatedly, and of its own volition, rising toward the ceiling. Just as I was wondering, “What on earth am I doing?” I felt a heavy, crushing sensation in my chest. I quickly stepped off the treadmill, and the feeling went away almost immediately. Even then, I was not ready to acknowledge that something was terribly wrong. Yet later that same night, there was simply no denying it: as I was resting in bed, the crushing sensation returned, and I began to feel inexplicably, frighteningly short of breath, and it finally clicked that I needed help.

While speaking with my primary care provider’s office the next morning, I was told they had an opening in a few weeks. I almost accepted that … but at that very moment, a long-buried memory came roaring back, loudly insisting, “Tell them about your radiation and chemotherapy — do it now.” So I cleared my throat and told them I should probably be seen much sooner than that. I haltingly explained that I had received radiation to the chest and chemotherapy that had included Adriamycin (doxorubicin, a chemotherapy drug that can cause heart muscle damage) about 16 years before, and I was worried that my symptoms could be due to cardiotoxicity from my previous cancer treatment. When I hung up the phone a few moments later, I did so with an appointment scheduled for that day.

The memory that spoke to me so clearly was a brief discussion I’d had many years before with my new radiologist shortly after I had been diagnosed with stage III Hodgkin lymphoma. I was just 22 at the time, trying to cope with my new reality as a young adult with a serious cancer — by taking every moment and making every decision while in the midst of what I now see as a self-protective daze. My oncologist had referred me to the radiologist, explaining that because I had several unfavorable prognostic factors, we needed to consider treatment that included not solely chemotherapy and not solely radiation, but both.

I had extremely “bulky” disease — meaning that the lymphoma was greater than or equal to 10 centimeters or greater than 33 percent of my chest diameter on chest x-ray.

 In addition to having stage III disease, I had also experienced “B symptoms,” including severe night sweats and weight loss, the presence of which serve as a marker for more advanced disease with systemic rather than solely localized involvement.

Thus, on that afternoon long ago, my new radiologist was explaining his recommendation for extended-field radiation to the mantle field and periaortal region, and he was reviewing with me the lengthy list of potential adverse effects associated with such treatment. His words describing these possibilities seemed to be flying around me, with none landing, until two words managed to break through my daze and push all the others aside. I asked, “Did you just say ‘heart damage’?” He had.

Compared with our current understanding, less was known at the time about cardiotoxicity due to radiation. Yet my radiologist did emphasize that, yes, it was possible for patients to manifest what he simply called cardiac damage many years following their radiation treatment. What wasn’t known then was that the higher the dose of the radiation, the higher was the risk of developing radiation- induced heart disease.

Because my lymphoma was so bulky, the biggest fear was the very real chance of relapse which, should it occur, would leave me with far fewer and less effective treatment options. At that time (the 1980s), in such cases, six weeks of high-dose and extended-field radiation was typical following chemotherapy to reduce the risk of relapse as much as possible. Fortunately, in recent years, there have been ongoing efforts to reduce the extent of radiation treatment for both field size and dose without compromising benefit.

In addition, technological advances have enabled more accurate targeted radiation delivery, which minimizes exposure to the heart and other surrounding normal tissue,

 though it is not yet clear whether these techniques have lowered the risk of developing late radiation-induced complications overall or served to delay the time to onset of such complications. Therefore, lengthier follow-up is needed to determine the prevalence and pattern of radiation- induced complications with current techniques.

At that time, however, all this was far off in the future, and there was little choice other than to go ahead with the radiation treatment as prescribed. So I went into “repression mode,” figuratively cupping my hands around those two words (“heart damage”), throwing them back into the swarm that was flying around me, and gratefully returning to my self-protective haze.

I so successfully buried those words that I never thought of them again until they miraculously roared back into my consciousness at the very moment I needed them. Because from the moment that I called my PCP’s office and pushed for an earlier appointment, I realized that it was crucial for me to advocate for myself and that I needed others to do so as well on my behalf to survive this.

During my visit to the PCP’s office, the advanced practice registered nurse (APRN) who was examining me began by giving me an electrocardiogram (EKG). I was surprised to learn that my EKG results were normal. But I was not relieved. I knew that a “normal” EKG does not necessarily mean that you do not have heart problems, and I was worried the EKG results would keep my healthcare providers from further pursuing my symptoms. So I carefully outlined my history to the APRN, explaining that although I was only in my 30s, I had concerns that my symptoms could be due to cardiotoxicity secondary to my radiation, the Adriamycin I’d received during my chemotherapy, or both.

She agreed that heart disease was very rare in women my age and that my cancer treatment needed to be taken into account. She thanked me for being candid and for providing specific details about my medical history and explained that she wanted to make a phone call to have me seen by a cardiologist right away.

Years later, my APRN told me about what occurred during that phone call. She explained that when she finally got a cardiologist on the phone, he listened to everything she had to say about my case and responded, “Why are you calling me about this patient? She’s far too young for her symptoms to be caused by coronary artery disease.” She then again went over my case from the beginning, stressing my history of high-dose radiation to the chest area in my early 20s, my specific chemotherapy regimen, and the nature of my symptoms, including severe chest pain and dyspnea at rest. He listened as she advocated for me, minutes after I’d advocated for myself.

So yes, my EKG was normal, but the test results from my new cardiologist confirmed my fears: severe radiation- induced coronary artery fibrosis (scarring), stenosis (narrowing), and 90% blockage. The worsening chest pain I’d been experiencing was due to reduced flow of oxygenated blood to my heart, caused by progressive narrowing of one of my coronary arteries.

Due to the complexity of my case, my cardiologist quickly brought in a colleague, an interventional cardiologist. He explained that because of the specific location of my blockage, there was concern over whether the better course of action would be a coronary artery bypass graft (CABG) or an angioplasty.

When my husband and I met with this second cardiologist, his demeanor was extremely grave as he explained the severity of my blockage and the risks associated with each procedure. At one point, when he was showing us images of my heart and the coronary arteries, I asked him point blank, “Should I be getting my affairs in order?” He simply said, “Yes.”

I was blindsided by his response. Although I’d asked the question, I expected reassurance. When I heard instead his devastating reply, time instantly divided into before the “yes” and after, and that’s when the tears came. They didn’t stop during our long drive home, and they came harder when I thought about having to share this bad news with my parents. I simply couldn’t bear it, so I asked my husband to call them for me. He did so as soon as we arrived home, as I listened, still in tears.

My cardiologists, in turn, brought my case for review before a large team of cardiologists, including invasive, interventional, and surgical cardiologists due to the difficult location of the blockage and the distinct risk of having another coronary artery collapse during an angioplasty.

After conferring, their overall recommendation was to conduct an angioplasty with placement of a drug-eluting stent, which had been approved by the FDA just the month before. But they also stressed the need to have a team of cardiac surgeons on hand to perform a CABG should a second artery indeed collapse, leading to a risk of myocardial infarction (MI) during the procedure. Whether to go with angioplasty or directly to a CABG was 100% my choice, and it was one of the most agonizing decisions I have ever made.

Ultimately, I chose the angioplasty. And during the operation, my cardiologists’ and my own fears came true: a second coronary artery did in fact collapse during the procedure. But fortunately, a CABG was not the option chosen by my cardiologists. I later learned that because the drug-eluting stent they used during my first angioplasty was so newly FDA-approved, their quantities were extremely limited and the cardiologists therefore needed to lobby strongly for approval to place a second stent.

To my good fortune, their efforts were successful: the team was able to immediately do a second angioplasty and place the second stent. At the end of my successful procedure, both of my cardiologists were visibly relieved. I was profoundly grateful to them then, and remain grateful today and every day, for they both became advocates on my behalf as well, helping me to survive the most frightening moments of my life.

I knew then and know now just how fortunate I was that my radiation-induced coronary blockage was diagnosed before my symptoms worsened even further. Overall, for Hodgkin patients who have been treated with radiation, cardiovascular disease is the most common cause of death after malignant disease, most frequently occurring decades after their treatment. These patients have an increased risk for coronary artery disease, congestive heart failure, valvular heart disease, and sudden cardiac death, with the risk particularly high in those who were treated before the age of 40. The relative risk of death from a fatal MI in patients who received mediastinal radiation therapy is increased from 1.5 to 3.0 times that of patients who have not received radiation.5

Years following my angioplasties, during a routine follow- up visit, my cardiologist shared with me that I was the first patient he’d diagnosed and treated for radiation- induced coronary artery disease due to cancer treatment. And I know that his advocacy on behalf of patients has extended far beyond my original case.

For example, just months after my procedure, he told me he had emergently treated a young man who also had Hodgkin lymphoma and developed cardiac symptoms as a late effect of his cancer treatment. In addition, he has given grand rounds (an important teaching tool in medical education and patient care for doctors, residents, and medical students) on recognizing and treating radiation-induced cardiotoxicity in young adult cancer survivors.

Nevertheless, few PCPs, generalists and patients are sufficiently aware of the late effects that may develop often decades after cancer treatment, no matter the patient’s age. With so many cancer patients now surviving their disease and ultimately returning to their PCPs for their medical care, there is an urgent need for these physicians and their patients to develop a more specific understanding of long-term, late, and secondary adverse effects of particular cancer treatments, including cardiotoxicity and second cancers.

Debra Madden became an active cancer research advocate following her second cancer diagnosis at the age of 42. Nearly 20 years earlier, she was diagnosed with Hodgkin lymphoma and subsequently developed late treatment effects, including cardiotoxicity and breast cancer. Debra is currently a member of the ECOG/ ACRIN Cancer Research Group as well as the Patient-Centered Outcomes Research Institute’s Advisory Panel on the Assessment of Prevention, Diagnosis, and Treatment Options. She also serves on multiple grant review panels, including the Congressionally Directed Medical Research Program (CDMRP) for breast cancer. Debra blogs at 

			National Cancer Institute. Adult Hodgkin Lymphoma Treatment — for health professionals (PDQ). Updated April 2, 2015. http://1.usa.gov/1IgG039. Accessed April 11, 2015.

			Darby SC, Ewertz M, McGale P, et al. Risk of ischemic heart disease in women after radiotherapy for breast cancer. N Engl J Med. 2013;368(11):987-998.

			Terezakis SA, Kasamon YL. Tailored strategies for radiation therapy in classical Hodgkin lymphoma. Crit Rev Oncol Hematol. 2012;84(1):71-84.

			Jaworski C, Mariani J, Wheeler G, Kaye DM. Cardiac complications of thoracic irradiation. J Am Coll Cardiol. 2013;61(23):2319-2328.

			Yusuf SW, Sami S, Daher IN. Radiation-induced heart disease: a clinical update. Cardiol Res Pract. 2011; doi: 10.4061/2011/317659.

A survivor "pays it forward" by stressing the importance of knowing your risks.

Cardiotoxicity After Cancer Treatment

One thing cancer survivors seem to have in common is a capacity for resilience and an ability to take the challenges a cancer diagnosis brings and channel them into something positive. This issue of Heal magazine brings those qualities into sharp relief with truly inspiring stories of individuals who used their experience of having cancer to forge a new beginning.

This affirmation is beautifully captured in the photographs of Bill Aron, who has shared with Heal a few of the many photos and vignettes from his new book, “New Beginnings: The Triumphs of 120 Cancer Survivors.” Aron, himself a survivor, understands how “cancer makes us realize that each day is meant to be appreciated,” and showcases through his moving photographs and testimonials the lessons we all can learn from the survivor’s journey toward healing.

Survivors face challenges aplenty, and one of our goals with Heal is to offer practical suggestions to help make your lives better. Getting needed sleep represents a complex challenge for many survivors, and thankfully, as Kathy LaTour writes in this issue’s cover story, sleep disorders are finally getting the attention they deserve, as she shares some of the research and resources out there available to help.

We all know that some cancer treatments can be very hard on the heart, and in this issue, a two-time cancer survivor shares her powerful story of how therapy she received for Hodgkin lymphoma two decades earlier resulted in damage to her heart and a second cancer diagnosis. Her cautionary tale underscores the importance of self-advocacy and raising awareness about potential late effects of treatment among clinicians, as the number of cancer survivors, thankfully, continues to rise.

And, once again, we feature fresh insights from our cadre of CURE contributors — patients and survivors themselves &mdash; who generously share some of the lessons they have learned navigating cancer and its aftermath to help others.

Please do not hesitate to reach out to us with suggestions for what you’d like to learn more about in the pages of Heal and on our website, CureToday.com.

From the Chairman

One thing cancer survivors seem to have in common is a capacity for resilience and an ability to take the challenges a cancer diagnosis brings and channel them into something positive.

Inspiring Resilience

It’s the middle of the night, and Heidi Floyd is once again answering email in the bathroom so she won’t wake her husband. Now five years out from her second round of breast cancer, Floyd struggles nightly to stay asleep.

“I think it’s a combination of things,” says the mother of four. “I used to sleep on my belly and now I can’t. And I have lymphedema and will wake up with my arm asleep.”

Oh, and don’t forget the hot flashes, she adds, calling them a side effect of the estrogen blocker she must take.

While it’s not hard to understand why an estimated 80 percent of those in treatment have sleep issues while coping with the stress of the unknown and drugs that disrupt the body in multiple ways, the idea that sleep challenges may continue into survivorship comes as a surprise and disappointment, Floyd says.

Julie Otte, PhD, RN, OCN, assistant professor at the Indiana University School of Nursing, says the number of survivors of breast cancer with sleep issues ranges from 60 to 90 percent, depending on the study and the research parameters.

“This is compared with 55 percent of those who have not had cancer,” she says. “The problem in studying sleep is how sleep is measured and how people conceptualize it.”

There are many subtypes of insomnia, Otte says. It could be the result of medication or hot flashes, but when sleeplessness continues over a long period, it becomes insomnia syndrome.

“We need to know exactly what wakes the women up to identify the underlying issue to see if it’s psychological or physiological,” Otte says.

Floyd, now living in Atlanta, says her first diagnosis in 2005 was a 10 on the stress meter and left her with insomnia. Diagnosed with stage 3B breast cancer and eight weeks pregnant with her son Noah, she didn’t have health insurance because her husband was a seminary student. The first oncologist she saw wanted her to terminate the pregnancy. She refused and found another oncologist who was willing to treat her and, as she says, her son, who is now a healthy 10-year-old.

Her recurrence in 2011 meant more surgery, more treatment and less sleep. When a tumor was discovered on the scar tissue of her first mastectomy, she asked for a bilateral mastectomy. They reluctantly agreed, and pathology revealed a small cancer in her “healthy” breast.

Her insomnia got worse with physical pain and lymphedema now part of the equation, not to mention the stress.

She says she never has trouble falling asleep, but after a hard sleep for an hour and a half, she is up every 45 minutes. She tried napping during the day, which didn’t help, and she doesn’t want to take medication.

Luckily, new attention is being paid to sleep as a survivor issue and one that may significantly affect quality of life as well as health. It is during sleep that the body repairs and restores vital functions, providing the down time the body needs to repair cells and tissues.

Sleep also affects the waking hours with studies showing those who are sleep deprived may have daytime consequences, such as trouble making decisions or paying attention.

And the damage from inadequate sleep can raise the risk for some chronic health problems as well as how well we think, react, work, learn and deal with others. Indeed, a new study shows that “sleep efficacy, a ratio of time asleep to time spent in bed, is predictive of survival time for women with advanced breast cancer.”

The study results, which were published in early 2014 in the journal 

, involved 97 women with advanced breast cancer. In what the authors called the first study of its kind, mean survival was 68.9 months for efficient sleepers compared with 33.2 months for those with poor sleep efficacy.

Survivors may suffer from a variety of sleep disorders, including insomnia, the inability to fall asleep and stay asleep; circadian rhythm disruptions, the inability to sleep and wake at the right times; hypersomnia (difficulty staying awake during the day); sleep-related movement disorder such as restless leg; issues related to sleep stage or partial waking; or sleep-disordered breathing such as apnea, when breathing stops for 10 seconds or more during sleep. The symptoms of sleep apnea may include snoring, stopping breathing during sleep (apnea), and excessive daytime sleepiness.

One of the challenges of resolving sleep issues, says Otte, is understanding the multidimensional aspects of the problem, which can be both psychological and physiological.

If there aren’t major physiological problems such as sleep apnea or restless leg, Otte says, cognitive behavioral therapy (CBT) is the only current approach recommended as an effective treatment for insomnia (see sidebar).

“In order to have effective treatment of sleep problems, such as CBT during survivorship, the underlying physical issues need to be assessed and addressed first such as restless leg or apnea,” Otte says.

For her own management, Floyd relies on good sleep hygiene, a set of activities that includes staying away from caffeine and spicy food and keeping the room she sleeps in cool and dark.

Otte explains that part of CBT helps women better handle the psychological burden brought on by sleep disorders.

Floyd wants to know solutions so she can pass them on to the women she comes in contact with as the executive director of Pink Power Moms, a networking group of breast cancer survivors who are inspiring and empowering the survivors in their community.

She says she doesn’t want to tell them that the sleep issues they experienced during treatment may stay around for years, and yet undertands that knowing they aren’t the only one will help reduce stress.

“I do find that the more I exercise, the better it is for my sleep, not because I am more exhausted but because I am balanced,” she says, adding that what she wears to sleep cannot be constrictive in any way, meaning it’s usually a cotton tank or double layer nightgown. If she wakes in the night, she meditates in bed via prayer while trying to resume sleep before rising, and she is always sure she has water next to her to prevent a trip to the kitchen.

Otte says oncologists need better assessment tools to be more diligent in screening for sleep disorders and referring women to sleep clinics to help resolve the issues.

As sleep disorders have garnered more attention among cancer researchers, the therapies to alleviate the problem have came under study. While a number of therapies have been explored, only cognitive behavioral therapy (CBT) has been accepted as a recommended therapy for insomnia by the Oncology Nursing Society in its Putting Evidence into Practice (PEP) guidelines. To be listed in its “Recommended for Practice” category, effectiveness has been demonstrated by strong evidence from rigorously designed studies and for which expectation of harm is small compared with benefits.

Ann Berger, PhD, APRN, AOCNS, FAAN, Associate Dean for Research at the University of Nebraska Medical Center College of Nursing and member of the sleep/wake disturbance PEP team, describes CBT for insomnia as a therapy to assist patients to change beliefs and behaviors regarding sleep.

“A therapist first learns about the person to determine the preexisting issues about sleep. How did you sleep before the diagnosis compared with now?” asks Berger. The therapist next identifies factors that precipitated sleep disturbances, such as the diagnosis of cancer or a particular cancer treatment. Lastly, a therapist will learn about beliefs or behaviors that perpetuate the sleep disturbances so they can be addressed.

For example, Berger says, the person may believe that when they wake in the night, watching television will put them back to sleep.

“We need to dispel cognitive beliefs that have no evidence,” she says, “and once that is accomplished, a new behavior needs to be put in place such as suggesting that the person go to a quiet place to use headphones to listen to music instead of using light-emitting devices such as television or mobile devices.”

CBT will be unique to each person as they explore the association among thoughts, feelings and behaviors. Individuals can identify behavioral changes that will help them develop skills to solve problems and to implement new behaviors.

In addition to the “Recommended for Practice” category, the PEP Scale includes interventions deemed “Likely to be Effective” (listing interventions for which effectiveness has been demonstrated “from a single rigorously conducted controlled trial” in addition to other recognized levels of study). For sleep/wake disturbances, both exercise and mindfulness-based meditation are listed in this category. To see where other complementary approaches fall, go to 

https://www.ons.org/practice-resources/pep

Berger says research is ongoing to determine how best to deliver CBT, as sleep specialists are not yet available in all cancer centers.

She doesn’t recommend pharmacologic options except for a short period of time to address a specific crisis. “The drugs have not been studied either as long-term solutions or against other drugs the person may be taking.”

For information about pharmacologic agents for sleeplessness, she recommends visiting 

. In addition, MD Anderson Cancer Center has opened 

 where survivors can receive counseling and find resources.

Sleep disorders are finally getting the attention they deserve.

Getting Some Sleep: New Strategies for Survivors

The group Facing Our Risk of Hereditary Cancer Empowered (FORCE) is spreading the word to patients, survivors, and their families about the benefits of joining ABOUT (American BRCA Outcomes & Utilization of Testing), a patient-powered network that’s collecting real-world information from the real-world experiences of people affected directly or indirectly by hereditary cancer risk.

And, armed with this information, FORCE and its partners aim to increase knowledge about the best prevention, diagnostic, and treatment approaches for this population.

We recently sat down with the group’s executive director, Sue Friedman, DVM, during its annual conference in Philadelphia to learn more about the network.

“ABOUT is really the first research registry that is created and governed by and for the hereditary breast and ovarian cancer (HBOC) community,” explained Friedman. “Patients really get input into the direction of the research … they help us to define the research questions we need answers to, so that we can ultimately improve patient outcomes.”

She explained that many people receive little or conflicting information about medical options associated with HBOC and struggle with the decision. They may feel they have to do their own research on their medical options, none of which are ideal, but they still have to choose.

There are quite a few examples of areas where there are no guidelines, noted Friedman, for example, when is it appropriate for a high-risk woman to prophylactically remove her uterus when she is having surgery to remove her ovaries and fallopian tubes? This decision is currently guided largely by physician recommendation, according to research FORCE conducts through its patient engagement surveys. Friedman said she and her colleagues find this, “really fascinating, because there are no guidelines there.”

Another gap in the research that FORCE has identified is how women make decisions on whether to use hormone replacement therapy following ovary removal and, for those who do, why some women stop.

Through ABOUT, Friedman stressed, “We hope to inform patient decision making based on 

ABOUT is open to anyone who has a family history or personal history that is consistent with hereditary breast, ovarian, and related cancers. That includes pancreatic cancer, prostate cancer, and melanoma — and it’s for people who have had genetic testing and people who haven’t, said Friedman.

“If they have a family history, if they have a family member who’s had genetic testing, if there’s a known mutation in the family, whether or not they’ve had testing, they can join the network. It’s open to men and women, cancer survivors and “previvors” (high-risk individuals with a known mutation or family history).

The network has enrolled more than 5,800 people into its research registry, with an overall target of 12,000. Patients can join online through www.aboutnetwork. org. FORCE has also provided oncology practices with information for patients who might like to become involved with the registry. The baseline questionnaire takes about 15 minutes to complete, and then periodically individuals in the network will be asked to complete surveys on their health and medical decisions. Participants will also be alerted to clinical trials for which they may qualify.

ABOUT is sponsored by the National Cancer Institute and the Patient-Centered Outcomes Research Institute.

Snippets

The group Facing Our Risk of Hereditary Cancer Empowered (FORCE) is spreading the word to patients, survivors, and their families about a network that's collecting real-world information from people affected directly or indirectly by hereditary cancer risk.

Registry for Patients, Survivors, and 'Previvors" Aims to Power Outcomes-Based Research

My name is Dee and I’m a knitter. A cancer survivor, yes, but also one of those people who is absolutely, and completely, obsessed with making things with sticks and pretty string.

I knitted my way through chemo, while waiting for my turn on the radiation table and for CT scans. I purled in exam rooms, before blood work, after speech therapy and while I spent five days in ICU. My surgeon came in to see me and there I was, knitting a sock. My bed and table were covered with patterns and sock yarn and stitch markers and I had a knitting needle jammed behind my left ear. I looked like I’d just wrestled a Muppet and lost. Badly.

I made a pretty fabulous pair of wool cabled bed socks while I got chemo and a lovely cowl in a gorgeous silk blend yarn as I waited for my morning radiation treatments. I finished another pair of socks in my post-surgical haze, half listening, to the nurses at their station.

And I understood the power of it, this knitting thing. Of course it was about control; that part I got. During a time when I had little say over anything that was happening to me, I could pick the pattern and choose the prettiest yarn and create something beautiful.

What I didn’t yet know about all this sticks and string stuff was how transformative it would be. Many knitters mark time by how quickly they can finish the sweater or the shawl, but this wasn’t about how fast I could knit that pair of socks or if I’d get a chance to wear the cowl this winter if my neck was still red and raw from the radiation.

When I pulled out my knitting from my project bag, I felt myself take a deep breath in and let it out, slowly. I would check my pattern to make sure I was in starting the right place. I’d feel the yarn (oh, the silk blend is so perfect for this) and maybe sniff it. The Irish wool for the fingerless mitts had a marvelously earthy, sheepy smell, and don’t those cables look great in it? Oh look, I goofed that one up.

And that’s okay. It can be fixed. I’m being fixed, too.

Stitch by stitch, I’d relax. I’d look up from my chemo chair and see my fiancé next to me, reading. I’d knit a few more rounds and check to see how empty the IV bag was. A few more rounds and this week’s treatment will be done. Three more treatments and the sock will be done. Cashmere, take me away.

And the socks were done. So were the mitts and the other pair of socks and the cowl. And a bag, too.

Well, not quite yet. I’ve still got more than a few sweaters left in me.

Dee Wieczorek is a head and neck cancer survivor. She lives in Delaware County, Penn. with her fiance, their cat and way too much yarn. She can be found on Twitter @littleredyarn.

Voices

I'm a knitter. A cancer survivor, yes, but also one of those people who is absolutely, and completely, obsessed with making things with sticks and pretty string.

Summer 2015 | Heal

What Do 120 Cancer Survivors Have in Common?

Cardiotoxicity After Cancer Treatment

Inspiring Resilience

Getting Some Sleep: New Strategies for Survivors

Registry for Patients, Survivors, and 'Previvors" Aims to Power Outcomes-Based Research

Stitch by Stitch: The Healing Power of Knitting

Latest News