I WAS CANCER-FREE, and I felt like a fraud. I was in the waiting room at Memorial Sloan Kettering Cancer Center, waiting for one of my biannual screenings.

I had recently learned that I had the BRCA1 genetic mutation, which my doctors said gave me an 87 percent risk of developing breast cancer. My father’s parents and both of his sisters had already died of cancer. I was sure that my parents — or maybe I &mdash; would be next. But I didn’t actually have cancer, and for that I was deeply grateful. I was also kind of embarrassed.

“She is so young — what a shame,” I imagined the real patients with cancer thinking. I didn’t want to join that cancer club, but I was also terrified that someone would find me out and scoff at me for wasting time that doctors could be spending on people who were fighting for their lives.

I knew how devastating cancer treatment could be, and I couldn’t calm my nerves. I worried about undergoing preventive surgery and about getting the disease, at the same time questioning my right to even have those concerns.

Between the diagnosis, intimidating waiting rooms and my self-consciousness about being a cancer impostor, I spent the next three years running from my fears. I tried to party and drink those worries away. I was in my early 20s and found plenty of distractions in New York City.

It wasn’t until I confessed my flakiness to my father that I realized I was being foolish. He certainly wasn’t pressuring me to have surgery, but he wanted me to be informed — or at least show up to my doctor’s appointments.

I sobered up. I started going to my appointments and spoke with a genetic counselor. I worked through all my options, and it turned out that I was a great candidate for a preventive double mastectomy. I hoped that the surgery would alleviate both my risk of breast cancer and my obsessions over it.

At 28 years old, I had a successful double mastectomy. I was healthy and healed quickly. But throughout the process, I felt alone and scared and, most surprisingly, guilty. At the same time, my friend was going through cancer treatment at 33, and when we met for brunch, I was so nervous, I spilled my latte all over her lap. She was shocked that I felt so nervous and was more empathetic and kind than I felt I deserved. After we ordered fresh lattes and lots of napkins, my perspective began to shift.

I started to share my story, hoping my experience would help another girl who might be just as uncomfortable. I created the docu-series “Screw You Cancer” and a comedic memoir, “Dangerous Boobies: Breaking Up With My Time- Bomb Breasts.” I wanted to start a conversation. Even if it ended up being between me and one other person, maybe we could use our experiences to heal each other. I wished I’d had a book like “Dangerous Boobies” at the time of my diagnosis and surgery. Still, in writing it, I was very sensitive to make sure I wouldn’t offend cancer survivors, the people I admired most.

To my absolute surprise, I was welcomed with open arms by patients with cancer and hospital staff who understood that my situation was different but still important. After my book came out, I was interviewed by NPR’s San Francisco station, KQED (tinyurl.com/ybqevjq8). Women called in, a mix of survivors and previvors, each finding something relevant and valuable in the discussion. We overlapped in a unique way. We discussed nipple reconstruction, sex after surgery and how to explain to your impatient boss why you need to take a nap at lunch. Our experiences were put to use, and it felt empowering that, after everything we had been through, we were able to use that information to help someone else.

During this journey, I’ve spoken to survivors who support preventive measures because of their experiences with cancer. I’ve spoken to previvors in both deliberation and recovery. None are identical, but we all have a lot in common. We’re able to compare mastectomy notes, what silicone tape helped our scars heal and how constipated we were after surgery. It’s all important information! Our differences don’t prevent us from being uniquely bonded by what we’ve been through.

Here are perfect strangers offering support, whom I had been too afraid to even make eye contact with.

This incredible community opened up to me. I hope to repay them by treading lightly when discussing this topic, being sure to explain that I know my experience was not the same as actually being treated for cancer. But overcoming my fear of going public with my story has enabled me to connect with young women who are in the same position I was — and, hopefully, to help them.

It turns out we all want to help others feel less alone.

Articles

Bookshelf

Cancer-free but at risk, one previvor felt guilty for receiving medical attention.

Worried About Worrying

SEXUAL PROBLEMS ARE AMONG the most common side effects of cancer treatment. Unlike other bothersome issues — say, anxiety over a new diagnosis, mild depression or fatigue related to chemotherapy &mdash; sexual problems do not always resolve with time. Returning to a pleasurable sex life usually requires medical treatment along with good communication, affection and teamwork.

Up to 80 percent of people treated for prostate, breast, colorectal, bladder or women’s cancers (cervix, ovarian, uterine) end up with damaged sexual function, according to the results of a variety of studies. Among people with leukemia, lymphoma or childhood cancers, around a third develop new sexual problems. The most common include a decreased desire for sex (in both men and women), erection problems, and vaginal dryness and pain during intercourse (especially among women in sudden menopause due to cancer treatment).

The stereotype is that cancer survivors have sexual issues because they feel unattractive and cannot adjust to changes like mastectomy or an ostomy. In reality, many cancer treatments interfere directly with the body systems necessary for a healthy sexual response. For example, surgery in the pelvic area cuts nerves or removes crucial organs. Radiation to the pelvis impedes the blood circulation that is crucial for erections and vaginal expansion and lubrication during arousal. Chemotherapy can lead to nerve damage or hormone deficiencies, and the new immunotherapies may cause severe fatigue and hormone changes.

Treatment to the brain has the potential to damage sexual excitement and pleasure.

Many patients never discuss sex or fertility issues with their oncology teams or, at best, get warned of possible side effects during the informed consent process prior to their treatment. With so many other anxieties arising in the early days after cancer diagnosis, any mention of sexuality may fall off the radar.

During treatment, both patients and partners may fear that sexual contact is unsafe but be too embarrassed to ask. After treatment ends, they may wonder when to resume sexual activity. If new sexual problems are ruining what used to be a pleasurable and intimate part of their relationship, they do not know where to turn. Even when patients are assertive enough to bring up the topic, their doctors and nurses may not offer satisfactory answers or referrals.

I am a clinical psychologist and a two-time survivor of breast cancer. I have spent most of my career trying to understand, prevent and overcome cancer-related problems with sexuality and fertility. As a faculty member at the University of Texas MD Anderson Cancer Center, I received grants from the National Cancer Institute and American Cancer Society to fund our development of online self-help programs for men’s and women’s sexual and fertility problems related to cancer treatment. We published the results of several studies showing that the programs improved sexual function and satisfaction and helped with decisions about preserving fertility. I retired in early 2016 to devote myself full time to Will2Love.com, a digital health company with a mission to increase the number of people who receive high-quality, research-based help for sex and fertility issues after cancer by 50 percent by 2025.

Will2Love is joining the American Cancer Society in a six-month study, Find Your PATHS (Pragmatic Assessment of a Tool to Help Survivors) to Sexual Health and Parenthood. We are testing the current versions of our personalized, in-depth programs, which provide evidence-based sexuality and fertility education, plus guidance and self-help resources for patients with cancer and their intimate partners. The goal of the study is to determine whether the programs improve sexual function and satisfaction and decrease distress. The study is open to anyone aged 18 years or older who has been diagnosed with cancer or is the intimate partner of someone with cancer, has concerns about sexuality and/or fertility and lives in the United States.

Participants who complete a brief online questionnaire will be able to use the self-help program for three months, free of charge. After that, they will be asked to fill out followup questionnaires. If they do so, they will get another three months of access to the program. Privacy is carefully protected. To learn more about the study or to sign up, visit will2love.com/FindYourPathsInfo. Another easy option: Go to Will2Love’s home page (will2love.com), where an announcement about Find Your PATHS will pop up.

Leslie R. Schover, Ph.D., is a clinical psychologist who specializes in helping patients overcome cancer-related concerns about sex and fertility. After retiring as a faculty member at the University of Texas MD Anderson Cancer Center, she founded Will2Love in 2016. The same year, she received the Jimmie Holland Leadership Award from the American Psychosocial Oncology Society.

Features

A free online pilot program helps people with cancer and their partners work through sexual health and fertility obstacles.

Finding Your PATHS and Addressing Sexual Health

“I’M SORRY, BUT THERE isn’t anything else I can do for you.”

Many patients fear hearing that statement from their doctors if standard treatments for cancer stop working.

But even when those words are spoken, they don’t always mark the end of a patient’s treatment journey. An option for some may be expanded access programs, which offer promising experimental drugs — outside the structure of clinical trials &mdash; to seriously ill people who have exhausted other treatment options. In some cases, drug developers run these “compassionate use” programs, which do not focus on collecting safety or efficacy data, for groups of patients; in others, they are designed to accommodate just one person. Often, developers foot the bill for the treatments.

These programs are rare, but the process of joining them got a bit less complicated in early October, when the Food and Drug Administration (FDA) streamlined the steps doctors must take to enroll patients who meet eligibility requirements by creating a shorter application form, FDA 3926.

An advantage of expanded access programs is that every eligible patient who is enrolled gets the experimental drug in question. This does not always happen with clinical trials, since some participants may be placed in a control group receiving standard-of-care treatment.

Of course, we at the EndBrainCancer Initiative (EndBrainCancer.org) strongly advocate participation in clinical trials. Through our Direct Connect and Clinical Trial Prequalification programs, we often find appropriate studies for people with brain cancer, and help them enroll. However, people with serious illnesses or rare diseases might not qualify for these trials due to specific inclusion or exclusion requirements.

Still, we believe that all patients should have immediate access to advanced treatments for which they are eligible, even if the therapies are still experimental, and sometimes expanded access programs offer more leeway. That’s why we encourage patients with cancer to tell their doctors, at the outset of treatment, that they are interested in expanded access programs and would like these options factored into their therapy plans. Patients may not know which drugs, if any, they will later be interested in trying, but they can get the process rolling by putting their doctors on alert and giving them copies of the FDA form.

Admittedly, learning about and enrolling in these programs is not simple.

A patient might find an appropriate one by searching ClinicalTrials.gov and drug company websites, or by checking with the FDA at 855-543-3784. A promising program’s sponsor can provide details about joining.

For a drug of interest that offers no expanded access program, a doctor can — after first getting the backing of his or her hospital or independent institutional review board &mdash; ask the developer to create one. Once those steps have been taken, the patient can help by contacting the drug’s maker and arranging for its representative to meet with the doctor. It’s a good idea to act quickly, because the approval process can take as long as two months.

Once the drug maker grants permission, the patient should give the doctor Form FDA 3926, or explain that it can be obtained by visiting tinyurl.com/ycw3w2mx, calling 855-543-3784 or emailing druginfo@fda.hhs.gov. Luckily, this part of the process can move much faster. In emergency cases, the FDA authorizes submissions in a matter of days, or even over the phone in just hours. Moreover, the FDA ultimately authorizes 99 percent of such requests.

When creating a cancer treatment plan, a doctor should talk to the patient about standard- of-care treatment for his or her disease; any gene mutations that drive that kind of cancer and are treatable with drugs; clinical trials; and expanded access to treatments. The doctor should also provide relevant information about drug safety and efficacy, as well as estimated costs of treatment, diagnostic tests, supportive care and any related travel. If your doctor does not discuss these topics with you, be your own advocate and ask.

IF YOU HAVE A brain cancer or tumor and have questions, or would like to be coached on how to discuss expanded access programs with your doctor, please contact our “Direct Connect” center at EndBrainCancer.org or call us at 425-444-2215. You can also reach our patient navigators online by visiting our website and filling out a patient inquiry form.

DELLANN ELLIOTT MYDLAND is founder and president of the EndBrainCancer Initiative, whose goal is to provide patients with immediate access to top brain cancer specialists, advanced treatments and clinical trials. She founded the group 14 years ago with her late husband, Christopher Stewart Elliott, who died of glioblastoma in 2002.

The Advocate

An easier application process could make experimental drugs more accessible to patients in need &mdash; outside the realm of clinical trials.

Expanding Expanded Access

AS A PATIENT ON oxygen due to lung cancer, can you boost your ability to breathe without assistance?

And is playing the harmonica a good way to do it?

A comprehensive survivorship program at Charles A. Sammons Cancer Center, in Dallas, is exploring that question and others as part of a program that applies arts, mindfulness and educational concepts to life with and after cancer. Onward: the Survivorship Journey is offered in parallel to or following treatment. Its goal is to provide “soul care” for people affected by the disease, says the leader of the team that created it, Susan Sayles M.S.,RN, OCN.

“We want to create an environment where people remember that they are still alive and can flourish,” says Sayles, a cancer survivor and manager of the Cvetko Patient Resource Center at Sammons. “Whether we can cure their bodies or not, we want to heal them as much as possible.”

Part of the Baylor, Scott & White Health System (BSW), Sammons and its sister facilities have long offered a comprehensive list of holistic services to patients — who are considered survivors from the moment of diagnosis &mdash; and their families. Services have included rehabilitation and fitness, nutrition and cooking, patient navigation, help with appearance during treatment and a variety of counseling options. The new program packages all these services under one name, making it easier for patients and their physicians to understand what’s available and to take advantage of the activities. According to Sayles, all the services are provided for free except for clinical psychology appointments, which are billable to health insurance.

The new program also incorporates a structure for con- ducting scientific studies — including the work with harmonicas to increase chest expansion and diaphragmatic breathing in patients with lung cancer, a separate project looking at chemo brain, and measurement of survivorship trends. There’s a focus on “understanding where patients should be on the spectrum of survivorship services,” Sayles says; to that end, the program uses a new 16-item questionnaire to “help place patients in the right direction.”

Onward launched Nov. 4 and was set to be unveiled at other BSW facilities shortly after that — first in Waco, then in Plano.

“It’s probably a little out of the ordinary to have a pro- gram this extensive, but we want to make sure we’re building a product that other facilities would want to emulate,” Sayles says.

The program launched with an event that allowed attendees to try a variety of Onward activities. The day was rounded out with a talk by CURE ® advisory board member Wendy S. Harpham, M.D., a long-term cancer survivor, author on survivorship and patient advocate. Based on a book she recently wrote titled “Healing Hope,” Harpham discussed choosing the best hopes on which to focus.

Harpham defined a “healthy survivor” as someone who gets good care and lives as fully as possible. With that in mind, she urged attendees to use the Onward program to help them overcome obstacles to hope, which could include lack of sleep, pain or distress. Further, she asked them to re-evaluate what they are hoping for to make sure those ideas will support their own happiness and satisfaction.

“Focus your attention and energy on hopes you can do something about, such as hope to be an effective patient who is going for checkups, reporting symptoms, eating healthful foods, exercising and doing mindfulness — all things that facilitate health,” she says. “Even if hope for cure is realistic, it may not be helping you get good care or enjoy life as much as hope for shorter-term goals and for outcomes over which you have near-complete control.”

The Onward program comprises five platforms:

Rehab and Fitness includes Pilates, yoga, a staffed exercise room and strategies for easing lymphedema. “People love to go and work out and be able to have the instructors help make them stronger,” Sayles says.

What About My Family? This platform offers counseling about financial issues, fertility, genetics and sexuality, as well as help for distressed caregivers and referral to com- munity resources.

Cognition includes a memory center and the chemo brain study.

Transition to PCP guides patients in their move from oncologists to primary care physicians. This piece of the program also involves an ongoing study.

Body and Soul offers nutrition education, cooking demonstrations, support groups and activities focused around specific cancer types or issues. Also included are behavioral health services, integrative therapies such as acupuncture and biofeedback, spirituality explorations and stress reduction techniques such as aromatherapy and meditation. Sayles manages the arts and medicine portion, which incorporates two art therapists and two music therapists who can visit with patients in groups or one-on-one. The program also includes an art studio that is open every weekday.

“There’s a story a day coming out of the art studio. One patient who has stage 4 kidney cancer says she found it more therapeutic than the occupational therapy she was prescribed. People who never thought they could draw are creating beautiful, wonderful things in there,” Sayles says. “It’s a good way to remember that you’re not just a disease — you’re whole on the inside, no matter what is going on.” Many find the music program meaningful, Sayles adds. One survivor said: “Oprah always gives something away to the whole audience; I wish could wrap up this last 20 minutes of experience with this musician and give it to everybody for Christmas,” Sayles recalled.

“We have tried to design something we know will be powerful in the hands of our patient population to help them grow stronger and have a better experience,” Sayles says. “It expands your boundaries when you feel your options are pretty limited. I love what we do.”

For patients whose treatment centers don’t offer such services, Sayles says, “there’s a lot they can do on their own, through YMCAs around the country that offer a survivorship program called Livestrong. Finally, there are meditation, yoga and Pilates classes all over, so if you don’t have a survivorship program associated with your area, you can get involved.”

Through music, art, acupuncture and more, a new program at one health system offers ‘soul care’ to survivors of cancer.

The Art of Survivorship

When Michael Becker was diagnosed with stage 4 head and neck cancer in 2015, he learned that his disease had been caused by the human papillomavirus (HPV), a silent infection that

One-fifth of all cancers are caused by viral infections. New treatment and prevention strategies are in the works.

The Infection Connection

Eva Moon knows that joking can’t make people’s problems go away.

All the same, she recommends that cancer survivors and previvors (who are predisposed to cancer but haven’t had it) use humor to ease some of their stress.

“It’s like when you’re in pain and you take a painkiller. It not only relieves the symptoms of pain for a short period of time, but it also gives your body some resting space that it needs to do the healing work that it can do,” says Moon, a writer, musician and performing artist who spoke about using humor to cope with cancer during the June annual conference held by Facing Our Risk of Cancer Empowered (FORCE) in Orlando, Florida. The organization is dedicated to improving the lives of people affected by hereditary breast, ovarian or related cancers.

“We’ll go crazy if we’re caught up 100 percent of the time in the stress of what’s going on,” Moon says. “At this conference, everyone’s got a story, everyone’s been through something, and we shouldn’t feel guilty about taking respite. Actually, there are many studies that prove

that laughter and humor have definite healing effects. They improve your state of mind, your physical state, and lead to healing.”

, Moon shared some cartoons she created about her experience as a cancer previvor, recounted that journey and discussed her perspective on the importance of humor in healing.

 In 2011, I found out that I was positive for a BRCA1 gene mutation that predisposed me to breast and ovarian cancers. My mother’s cancer had come back, and they tested her and she was positive, so my sisters and I all got tested. They’re negative, thank goodness; I’m the special one, which is all right, because I love attention.

I made the decision to have a preventive double mastectomy and hysterectomy.

I grew up assuming that I would die of cancer, because there was so much of it in my family. Now here I am at 61, still alive, and I plan to be alive for quite some time to come.

How did your genetic testing results affect your creative work?

At first, I stopped my writing and creative activity to try to get through my surgeries and take care of my mother, who was dying. I didn’t want to write about it, but then I wrote a song about how I was feeling. When I sang it for my husband, it was the first time he really got what I was going through. Then I wrote another song, and a friend told me, “You should do a show.” I thought, “No, I don’t want to do a show,” but then I came home and I started writing, and a week later I had a show, so obviously what I was feeling needed to come out. I finished in time to do my first performance in my mother’s hospice room, just a few days before she died. I’ve performed it a lot of times since then, but nothing’s going to beat that for just what it meant to me to be able to share that with her.

The show is called “The Mutant Diaries: Unzipping My Genes,” and it’s an hour-long, one-woman musical comedy. It’s got nine songs, and I tell the story of everything I went through, and hopefully show other people that you can come out on the other side of this, and that there are great things that can still hap- pen. It feels overwhelming when you’re in the middle of it, but at some point you’re not in the middle of it anymore, and then you can look back and have a different perspective. I’ve been fortunate to perform the show for many people across the U.S. and England to give them that message. I’ll be performing it at FORCE’s 2018 conference in San Diego.

If someone wants to bring me out to do the show for their group, as long as I can cover my expenses, I’ll go anywhere. All I need is a piano or a decent keyboard. I also have a DVD of the show that’s available on my website, evamoon.net, at mutantdiaries.com and also on Amazon pay-per-view.

What was it like for you to write the show?

Like a flood. I’d been resisting it for a while, but it had been building up. I was at a session here yesterday on reinventing yourself after surgery, and people were asking: “How do you get out of that interim stage between letting go of the past and moving forward into a new beginning?” For me, it was giving in to that urge to create something, and so I encourage people to do that. I use music and writing and humor, but someone else might use painting or dance or photography. If you find yourself having an urge to do something, even if it seems ridiculous to you, give in to it and just go with it and see where it takes you.

I was talking to someone yesterday who said that, after her surgery, she had this urge to take up photography, and she didn’t do it because she thought it was frivolous. But that urge is coming from somewhere, and it’s a message. The worst that can happen is that you’ll take some pictures and you’ll get over it and go on to something else, but maybe it’s the start of something new for you.

Was doing this show something new for you?

I had run a graphic-design business for 25 years and a web design business for 20 years. I took a leave and got through all my surgeries. I’d always done music and theater as a sideline, and after I recovered and was writing “Mutant Diaries,” I talked to my husband and said I just couldn’t face starting over with my web design business, and asked how he would feel about my trying to make a go of my creative work. He said, “Go for it,” because he was working at Microsoft, and it’s not like the money I was making meant the difference between dinner and no dinner. I was very fortunate in that way, and I’ve been writing and performing, traveling and doing “Mutant Diaries.” I’ve been writing for Huffington Post for a few years, I play in a band and I’ve written three screenplays which I’m trying to shop in Hollywood. They’re all comedies. They’re not literally about my journey, but a lot of what I write about now comes out of things I learned during that experience.

For instance, I wrote a stage musical called “First You Jump” that consists of five stories about people making extraordinary decisions when they can’t know what the results will be; they just have to jump and live with what happens. None are about having a mastectomy, but

all came out of having to make that decision without ever knowing if it was right, or what would have happened had I decided differently. Everyone faces decisions like that, turning points. Those moments fascinate me, so they show up in my writing.

Do you worry that people will be offended when you joke about cancer?

I worried about that when I found out I was BRCA1 mutation-positive. I was in the sea of despair, and about a week in, I was chatting online with a friend and he wrote a limerick about what I was going through. I won’t say that I laughed out loud, but I recognized that it was funny, and so I wrote one back to him, and then we started writing them back and forth to each other, and before I knew it, we were giggling, and I felt better and wanted to share this.

I had just joined the FORCE website online messaging boards, and I wanted to post these limericks there, but I was worried that people might be offended that I was making light of something so 

serious as cancer. But I couldn’t resist it, so I posted three limericks with a big warning, and I didn’t get one single negative response. People loved them, and started writing their own. It just unleashed this limerick monster, and by the time the dust had cleared there were over 300 limericks in that thread. It’s still there on the message boards. Women all over the world wrote them and shared them and talked about how grateful they were to have something to smile about.

What does it mean to you to know that your creative efforts are inspiring people within the cancer community?

You never want to feel that something you’re going through is pointless, and that there’s never going to be an upside to it. I’ve gotten so many blessings from this journey, because it’s been so gratifying to be able to help other people in a small way. They’re going through so much, but it’s good to have a little relief and to know you’re not alone. It’s a connecting thing to share these thoughts with other people.

How has FORCE helped to shape your journey?

FORCE was lifesaving to me. I joined the message boards even before I got my test results, and met so many women who had gone through this before me and could talk me off the ledge, help me explore my options and share their experiences. Now, it’s such a pleasure to be able to talk to other women and say, “You’re going to get through this,” to share my experience and pay it forward.

To meet these women in person is a treat. There are 600 people here, and we’re all sisters. You can just be so open. Last night at show and tell, I was showing my wonderful reconstruction that I’m very happy with, and I was perfectly comfortable standing and talking to people with my shirt off and saying, “Go ahead, touch them and see what they feel like.”

Where else can I be so open, and where else can other people be so open? My friends and family were incredibly supportive, but they hadn’t been in my shoes. Everyone here pretty much has been in my shoes.

Artist Eva Moon encourages comic relief to lift the spirits of cancer survivors and previvors.

Humor Is No Joke

Urine collection cups? Check. Needles for blood draws? Check. Dog? Check

Man’s best friend may not be a typical item on an oncologist’s list of tools, but as cutting-edge techniques emerge across the spectrum of cancer research and treatment, dogs are poised to lend their uncanny talents to the field of precision diagnosis.

about studies employing painstakingly trained dogs to detect cancers — including breast, ovarian, lung, prostate, thyroid, colorectal and melanoma &mdash; from patients’ breath, urine, plasma and blood. With their profoundly sensitive sense of smell, dogs may be able to con- tribute to better health outcomes in people with cancer by making early diagnosis possible when other methods are inadequate.

The story about this line of research was one of many 

 brought to the forefront in 2017, highlighting scientific advances, care trends and insights about the state of diagnosis, treatment and survivorship. Our offerings — including advice to “snowbirds” about cancer care while 

that is used to discuss cancer, and, of course, glimpses into the latest treatments for cancer subtypes — were meant to inform and inspire, leaving readers more confident and better prepared when meeting with doctors, researching potential treatments and searching for clinical trials. We also sought, in both feature articles and personal essays, to offer comfort and stimulate discussion by sharing the thoughts of those affected by cancer.

In this final issue of the year, we review some of the most compelling topics and images we presented, touching on many of the programs, decisions, ideas, care tactics, challenges and advocacy efforts that changed life for those affected by cancer in 2017.

Here, we recap lifestyle, survivorship and advocacy stories.

What kinds of lifestyle changes or supportive programs can boost emotional and physical health for people affected by cancer? We found an array of answers to that question in 2017.

In our summer issue’s “Staying on Track," we noted that wearable fitness trackers are being explored for their potential to improve health during and after cancer treatment. These devices can track activity level, heart rate, sleep patterns and calories burned, and some allow doctors to monitor the results remotely. Researchers believe that the wearables may help doctors determine which patients are the most active and able to tolerate aggressive treatments. The devices also may pro- mote physical activity that can help patients endure therapy and fight cancer, as well as contribute to weight loss that plays a role in preventing recurrence.

," also in the summer issue, chronicled the experiences of patients moved by their diagnoses to undertake extraordinary activities. After learning she had stage 2 breast cancer, psychologist Paulette Sherman vowed to write 22 books. Kelli Parker, a patient with metastatic breast cancer, began working with advocacy group METAvivor to stage Metsquerade balls and raise hundreds of thousands of research dollars. Ian Toothill climbed Mount Everest to raise money for charity, despite having stage 4 bowel cancer. And Clay Treska trained for an Ironman World Championship while preparing for, and then recovering from, a stem cell transplant for stage 4 testicular cancer.

“Most people cope by falling back on what they’ve always done, whether it’s to be spiritual, to be intellectual, to find comfort in family,” clinical psychologist Laura Howe-Martin, Ph.D., told 

. “A few take on extraordinary things: They start charities or start running triathlons. They divorce, or they quit what they thought was their dream job. They get more religious or less religious. People who have cancer are ready — ready to make meaningful changes.”

Maybe you can’t judge a book by its cover, but, nonetheless, physical changes caused by cancer and its treatments can be emotionally difficult, and programs created to boost patient appearance often do even more to lift spirits. That was the gist of our fall cover story “

," which detailed Look Good Feel Better and other appearance and fashion programs that go beyond looks to help restore the dignity that cancer can steal. The article listed several free services, what they pro- vide and to whom, and shared reflections on the programs.

“This isn’t frivolous stuff,” said patient Linda O. Williams. “People with cancer don’t have time for nonsense. Everything we do that allows us to get through another day is important. Moments like these, that lift your spirits and make you feel beautiful, truly matter.”

Quality of life improves when side effects are kept in check, and that’s why 

 devoted 2017 coverage to strategies designed to keep patients comfortable. The spring article “

” looked at the balancing act involved with using opioids to control cancer pain during a national epidemic of misuse of the drugs. “Opioids are our greatest tool in managing pain, but they are accompanied by risk and must be used with respect,” said Jeannine Brant, Ph.D., APRN-CNS, AOCN, FAAN, an oncology clinical nurse specialist and nurse scientist. One strategy for doctors: Poll patients about their risk of addiction before opting for opioids. Another: Prescribe naloxone, a prescription antidote to opioid overdose, for patients to keep on hand.

Palliative care offers another way to ease painand increase functionality in those experiencing side effects, 

” in April’s special issue on women’s cancers. A palliative care team might include physicians, nurses, physical therapists, pain management experts, massage therapists, chaplains, dietitians, social workers and psychologists, and it can help patients with any kind of cancer. Experts agree that this kind of care should be instituted as early as possible after diagnosis so that it can supplement and support medical treatments.

Side effects of treatment affect not just the body and mind but also the wallet. Cancer treatments can be expensive and are not always fully covered by health insurance. Meanwhile, patients and their family caregivers may experience income loss or even bankruptcy due to the illness. Our winter article on crowdfunding, “

t," mentioned websites, such as YouCaring and GoFundMe, that provide platforms for patients and others who want to raise funds.

“We were surprised at how many people shared our story, and also at how many people we don’t even know who donated to our cause, left messages of encouragement and otherwise offered to help,” said Lauren Carman Evans, who was treated for breast cancer. “This has been one of the silver linings we’ve experienced throughout this whole ordeal.”

When it comes to survivorship, there are countless issues people might confront, from treatments that continue indefinitely to long-term side effects.

We explored issues faced by people with metastatic cancer in our spring article “

." Although some face shortened life spans, others live for years or decades due to improved treatments. But one thing is true for many: Treatment and surveillance will continue for life. The article discussed the feelings of uncertainty that tend to come with this status, along with the importance of seeking professional and peer support, making the effort to stay physically strong and coming to terms with the possibility of end of life.

A challenge that can face men after prostate cancer — as well as bladder, colon, rectal or penile cancer &mdash; is nerve and other damage that impairs sexual function. Our winter article “

” discussed treatments that can cause this problem, therapies that help some regain function and other types of support for men with this problem.

“Men need to have correct and full information to make an informed choice (about treatment),” said patient Jim Schraidt, who experienced sexual side effects after under- going a prostatectomy due to prostate cancer.

Women treated with mastectomy for breast cancer or a predisposition to the disease often struggle to make a decision about breast reconstruction. In a cover story for our October special issue on breast cancer, “Flat, But Not Flattened” (curetoday.com/link/51), we reported that a growing number of women are opting against reconstruction due to surgical risks and other factors, deciding instead to “live flat.”

“For some women, reconstruction is the right thing,” said Barbara Kriss, founder of BreastFree.org. “But then there are others, like me, who really feel like they don’t need it.”

Advocating for specific populations with cancer, or raising awareness about their concerns and needs, takes hard work, but many are committed to it. Often, they use great creativity to meet their goals, and CURE ® covered a number of their efforts and accomplishments in 2017.

Cindy Stowell knew she was dying of metastatic colorectal cancer when she appeared on the TV show Jeopardy! She approached her lifelong dream with a goal in mind: Win $100,000 and donate it to cancer research “to help others.” Despite feeling ill and having a fever, Stowell accomplished her goal, winning six games and just over the amount she had envisioned. The money was donated to the Cancer Research Institute (cancerresearch.org), 

” in a March special issue on gastrointestinal cancers. Stowell died eight days before her first Jeopardy! appearance aired.

A CBS tribute video included Stowell’s comment on her contestant experience: “Even when you think the odds are completely against you, somehow, via luck or something, things can work out.”

Many in the cancer community have heard of music therapy, but the band N.E.D., profiled in “

” in the winter issue, takes an unconventional approach. Composed entirely of gynecologic oncologists, the band plays original music to raise funds for awareness initiatives. As of last winter, the group had released three studio albums, been featured in an award-winning documentary — and raised over $500,000.

The effort is as therapeutic for the doctors as it is for the cancer community. “This has added years to my career because I can get away from my day job,” said band member William Winter, M.D. “In this industry, you lose a lot of good women. It is some- times a heavy burden to face, day in and day out, without another outside release.”

Awareness is also the goal of the Serenity Project over- seen by METAvivor, a group focused on the concerns of those with metastatic breast cancer. “

," an article in the October breast cancer issue, reported that the project is sharing interviews with 16 people who have the disease, along with fanciful photos of the interviewees under water and adorned with body paint. The interviews, which shed light on the experience of living with this disease, are being shared via social media, and the photographs appear in a 2018 calendar.

“When all 16 of us pass away, die in our physical selves, these images and these stories — the way they impact other people &mdash; are going to live on far beyond death,” said METAvivor President Beth Fairchild.

Lack of awareness can affect patients not only emotionally but also medically, a problem often encountered by patients who are lesbian, gay, bisexual, trans- gender or queer/questioning. A summer story titled “

” explained that this group faces a higher risk of some cancers. It noted that some medical questions affecting this population have no answers due to a lack of research, and members of this community may not get proper care because they fear discrimination from providers. Now, however, some health systems are putting programs into place to meet the needs of this group.

“If a patient’s first encounter walking in the door is negative, they are not going to be comfortable seeking care,” said Rebecca Hirsh, M.D. “It’s our responsibility to ensure that all our LGBTQ patients receive the courtesy and respect they deserve."

Moving Mountains for Multiple Myeloma, an advocacy effort by 

, was also featured in the pages of the magazine. This spring, “

”  gave details about the second annual climb up Mount Kilimanjaro, in Tanzania, by survivors, doctors, research professionals and patient supporters. CURE Media Group collaborated on the adventure with Takeda Oncology and the Multiple Myeloma Research Foundation to raise awareness and research funds.

“What a bonding experience that will last a lifetime — which I hope is a long time,” survivor Terry White said. “You make those kinds of friendships over some- thing like this. This is a life-changing experience.”

CURE recaps the advances, trends and insights it shared in 2017.

Once & Again

NANEA M. HOFFMAN found it helpful to adjust some family traditions as she faced the holiday season after treatment for cancer. - PHOTO BY: TRIFON ANGUELOV

Nanea M. Hoffman had recently completed six months of treatment for breast cancer — a double mastectomy, six rounds of chemotherapy and immunotherapy &mdash; when the holidays rolled around.

Her Thanksgiving had been shot because of fatigue and a diminished ability to taste, and she expected to be feeling better by December. To her surprise, she felt her weakest, had no energy and hurt from head to toe. Yet her friends and family wanted her to celebrate.

“Around the holidays, we put so much emphasis on joy and gratitude,” says Hoffman, 47, of Santa Clara, California. “It’s very difficult to find your joy and gratitude. You’re just thinking about, ‘How am I going to make it to the bathroom?’ ”

Regardless of where people are in their cancer journeys, the holiday season often poses extra physical and emotional challenges. Those coping with cancer can expect this season of Hanukkah, Christmas, Kwanzaa and New Year’s — and any other holidays throughout the year &mdash; to be different, even if their treatment is over, mental health experts and cancer survivors advise. They suggest that patients make a list of what they want to do and let go of the rest. Ask for and accept help, they say. All feelings are OK, even conflicting and contradictory emotions.

Like many mothers, Hoffman typically coordinated holiday celebrations, but last year, her family stepped up.

“I’m a control freak. One of the best things was for me to be so weak that I couldn’t even boss anybody around,” she says. “‘OK, whatever’ is the best coping strategy I know.”

Because clinicians know when various treatments are likely to cause the heaviest burden of side effects, patients can ask them about adjusting the action plan, suggests Richard Dickens, M.S., LCSW-R, 64, a twotime cancer survivor and director of client advocacy at the patient advocacy group CancerCare (cancercare. org), based in New York City. For instance, patients may be able to postpone surgery or take a week off from chemotherapy.

In addition, mental health experts advise that patients make a list of holiday traditions and decide with loved ones which routines to keep and which to modify or skip.

“If hosting is something that fills your cup rather than drains it, then it might be a tradition to keep,” says clinical psychologist Wendy Lichtenthal, Ph.D., of Memorial Sloan Kettering Cancer Center in New York City. “This being said, one of the most important things is to be flexible and not continue to do something that isn’t working for you.”

Hoffman and her family normally host a New Year’s celebration with their friends and their kids, and she was determined to keep that tradition. So, last year, her husband devised a plan that would allow them to have friends over, enjoy the party and still accommodate her diminished energy level.

They told their friends in advance that, when Hoffman got tired, she would go to bed but wanted everyone to stay and enjoy themselves.

When she hit a wall, she says, “I felt OK to say that. It meant a lot to me that it didn’t have to be a thing. I was able to participate on my own terms.”

Keeping traditions, with modifications, could mean sitting and putting hooks on the ornaments while loved ones hang them on the tree. Or those who lack the energy to lead the holiday baking could select the music or sit in the kitchen so they’re part of the conversation, even if they’re not putting the cookies in the oven or frying the potato latkes or doughnuts.

The Christmas after Jane McGovern completed months of treatment for breast cancer, instead of cooking the customary Christmas Eve feast, she went to a restaurant with her family. She chose the traditions she wanted to continue, such as Christmas morning brunch, and scaled back on the rest.

She told her husband and three kids, then ages 15, 18 and 22, “This year, we’re going to do a tree, but I’m not going to go crazy (with decorating) outside,” says the Scituate, Massachusetts, resident, now 54. “I tried to keep things as normal as possible for my kids,” she says. “Christmas is always important to me and my family. The holidays are a joyful time for me.”

McGovern embraced the idea of picking and choosing, especially when it came to holiday parties, which she found draining physically, mentally and emotionally.

“You don’t blend in with the crowd when you’re bald. By Christmas, I had my ‘Marine do,’ like a buzz cut,” she says. “You have to deal with people who don’t know what to say, and you have to make them feel better. … Sometimes people will tell you things, (like) they had a (cancer) scare. They don’t know what to say. We’ve all been there. I’ve been that awkward person.

“As the person going through that, you only have so much energy to give. It does take energy to try to make someone feel better,” she says. “Respect the fatigue. Give into it.”

During and after treatment, with compromised immune systems, survivors can give themselves permission to avoid shopping malls, airplanes and holiday parties. Wendy Griffith, M.S.S.W., LCSW, OSW-C, senior social work counselor with the University of Texas MD Anderson Cancer Center, advises patients who have compromised immune systems to let loved ones know that they can’t go to a holiday party if there are guests sick with something contagious. That allows the host to be aware of the patient’s needs and that it will be necessary to ask either the person with a cold or the person with cancer to stay at home. Most of the time, she says, people respect that.

The expense of cancer treatment — copayments, time away from work, medications and hospital parking fees &mdash; can crimp holiday spending.

When Dickens, of New York City, was 37 and recovering from initial treatment for non-Hodgkin lymphoma, he couldn’t fly to his parents’ house in Chicago for Christmas, as he normally would have. He felt badly that his family was saddened by his absence. Since Dickens had been out of work on disability and didn’t have the money or the strength to buy and ship gifts, he ordered from catalogs and went without a tree.

Luckily, he had a strong support network of friends to help him through the season. Accepting assistance, as Dickens did, allows people with cancer to keep their routines as close to normal as possible. Cancer survivors and social workers advise asking for help when needed and accepting help when offered, saying it comforts both the patient and the friends and family members who want to do something, especially in the season of giving.

“Ninety percent of the time, people genuinely want to help you. Use that help,” says Griffith. “Put yourself in their shoes. Would you be OK with bringing a dish to someone’s house if they had cancer? Even if it’s a little bit of an injury to the ego to ask for help and admit to things you can’t do, allowing loved ones to participate makes them feel good about being able to contribute to your well-being.”

The holidays can be fraught for anyone, but throw in a cancer diagnosis, and patients and their loved ones are bound to feel a wide range of emotions, mental health experts say.

“It’s not spoken, but everyone’s wondering, ‘Is this going to be the last Christmas we’re all together?’ ” says Jane McGovern’s husband, Gary.

To change that focus, he says, he told his kids, “‘With all that Mom has been through this year, this Christmas is going to be especially nice for her. So, let’s make a point to chip in and do as many things together as we can.’ Never once did I say to the kids, ‘This is really serious.’ You don’t have to. The kids knew. They could see the physical changes.”

Patients themselves can have the same kinds of concerns and may even be thinking of friends they met through treatment or support groups who died. “There’s a certain amount of grief that comes along with cancer during the holidays. Even if you’re able to do a lot of your traditions, you may still be wondering, Is this my last Christmas? Is this my last New Year’s? What will next year be like?” says Griffith.

Parents of children with cancer, and patients with cancer who are parenting youngsters, tend to work hard to hide their fear and sadness from their children. Griffith recommends that they write in journals, take baths or practice whatever form of selfcare that allows them to express those emotions.

She notes, “You’re allowed to cry during the holidays. You can be angry. You can be sad. You can be everything and anything you feel.” It’s OK for loved ones to see the patient cry, she adds. If the person with cancer needs to leave the room, that’s fine too. In general, Griffith advises patients to let go of any “shoulds.” Acknowledging and working through emotions may be difficult at first, but eventually it allows people to “really feel happy, versus feeling fake happy,” she says.

“We hope that patients can give themselves permission to feel whatever they may be feeling: sadness, frustration, anxiety and grief over what has changed,” Lichtenthal says. “A cancer diagnosis and related circumstances, such as treatment side effects, often feel beyond one’s control, but how patients choose to respond to these circumstances is within their control. Patients can choose what the holidays mean to them. They can decide the holidays are a time to connect to those most important to them. A time to celebrate tradition. A time to get away. A time to give themselves the gift of self-care, respite or engagement in some other meaningful activity.”

Hoffman remembers telling her husband that he’d have to figure out what she and the family needed — paddle his own canoe and maybe do a little paddling for her. He and her closest friends gave her the freedom to be “ugly and messy,” she says. “I wanted to be able to say I hated everything.

I wanted to be with a friend who could see me, and (to be able to) say that everything sucked. It’s a very lonely experience, sometimes especially when you’re surrounded by people you love.”

The best gift for those living with cancer during the holidays is the freedom to cope by changing traditions and acknowledging emotions.

Bonus Issue | CURE