In 1986 when I was lying in a hospital bed in Dallas after my mastectomy, a group of 23 cancer survivors were meeting in Albuquerque, New Mexico, to discuss cancer survivorship. Their work would become infinitely important to me and my recovery from cancer in the years to come. What those survivorship pioneers initiated that day became the National Coalition for Cancer Survivorship (NCCS).

Being diagnosed with cancer changes everything about your life. Yes, there are those few who have a simple diagnosis, breeze through treatment and then actually get back to some form of “normal” — the life they lived before they heard the words, 

But for the vast majority of us, cancer is a game changer that impacts every aspect of who we are and who we will become, as well as our family and friends. The group in Albuquerque began the survivorship movement, providing the first definition of a survivor as “from the moment of diagnosis and for the rest of life.” They also called for recognition that the physical, emotional and psychosocial needs of survivors were not being addressed by the cancer community — and it was time that they were.

One of the most outspoken survivors at the meeting was a doctor and cancer survivor named Fitzhugh Mullan, a pediatrician who had written the first article on the emotional stages of cancer survivorship, “Seasons of Survival: Reflections of a Physician with Cancer.” Mullan named three survivorship stages: acute survivorship (diagnosis and treatment), extended survivorship (the time of watchful waiting when treatment ended) and permanent survivorship (long-term remission).

In the next two decades, the survivorship language and timeline was adapted to add the growing number of survivors who didn’t fit in Mullan’s design — those who have chronic cancer and those who have remittent cancer that goes away and then comes back. In 2008 Kenneth Miller, MD, an oncologist who founded the survivorship program at one of the major cancer centers in the east, broadened the definition yet again.

He added four subgroups of permanent survivors: those who are cancer-free and asymptomatic; are cancer free but with long-term/late problems (such as fatigue or depression); develop second cancers (unrelated to earlier treatment); or have secondary cancers (related to earlier treatment).

As with most of the documents of this time pertaining to the needs of survivors, Miller’s research was recognized by the small but growing survivorship community. As happens with change in any large, dynamic system such as medicine, it takes building the body of research before anything actually changes, and adding survivorship care wasn’t popular because insurance, except in a few situations, would not pay for services that were not considered treatment.

So, the early research brought about little change except for those few outliers who had already begun looking at patient- centered treatment and care. Yet the research continued to show that change was needed, and the need was great.

At age 37 and a new mother when I was diagnosed, I was highly motivated to live. I wanted to raise my daughter, then only one year old.

Because the idea of providing any kind of emotional support was nonexistent when I went through treatment, I suffered through some of the worst nausea and vomiting my doctor had ever seen. This was before there was an effective antiemetic, which came a few years after my treatment ended.

When my oncologist finally cut the dosage of the trial drug I was taking, I worried that it would not kill the cancer, an idea he sort of laughed off, explaining that the dosage was arrived at by what worked on metastatic cancer because that was the only one they could measure — if the woman lived or lived longer than anticipated, then it worked.

 was reassuring … So I went home and, exhausted, blocked the stairs, so my now 15-month-old could not get up the stairs while I took a nap to attempt to ameliorate the overwhelming fatigue that dominated my life.

When my four months of chemo was over, I began the wait. We all know what “the wait” is like. We spend our days wondering if every ache and pain is a sign the cancer has returned. Only in the past decade has anyone begun to look at fear of recurrence, now recognized as a major unmet need of survivors — indeed, as one of the most significant issues of survivorship that has not been addressed.

Because I am that “I am woman” kind of gal, I just pushed on, not realizing how debilitating fear can be. I couldn’t sleep, and when the Internet finally got up and running I connected with a digital list of survivors that absolutely did not help, but the fact that we were all up in the middle of the night should have given me some kind of clue that this was a universal issue.

Now when I look back, I can see that the woman I was before cancer was gone, and this new person had moved in. I was a journalist by training and had researched my treatment and chosen a good physician. I read about what I could do to help my body heal, adding vitamins, a healthy diet and some natural concoctions that I laugh at today. There was no science that any of it would matter, but I wanted some semblance of control over my future. It angered me that no one asked me lifestyle questions to try and arrive at why I had gotten cancer in the first place. When I complained about this to my doctor, he said it was easier to find the cure than the cause.

All my energy was in what I call “head work,” research and knowledge. It was all about cure. Not for another few years would I come to understand that cancer is a dual journey. It is of course physical, which is treatment and your physical self and being cured.

And, it is emotional, your soul and the person you will become when the reality of mortality is absorbed into your “self.” When someone said, “Aren’t you glad to get back to normal,” I snorted. That old normal was gone. I had to find the “new normal” of being a cancer survivor.

I looked for support groups, but the only ones I could find were peer-led by people who started them because they were desperate. Not until my surgeon started a support group in 1989 did I understand clearly that while I was considered cured, I was far from healed.

On that day in my surgeon’s office for my three-year checkup, I recall sitting on the exam table. When she said I was fine, I burst into tears. I could not stop crying and I remember asking her why, if I was well, did I think of dying so much?

She said she had seen many of her patients grapple with the same issues and had started a support group in her office that I might want to think about joining. “Where do I sign up,” I asked. She paid for a therapist to facilitate the group, one of the first in the city of Dallas.

I found healing because my surgeon saw what the research was bearing out: it wasn’t over when it was over. The medical community needed to recognize that the quality of our lives was a huge part of our experience in the cancer journey, and research was mounting that part of our treatment had to include not only physical well-being but also psychological well-being, social well-being and spiritual well-being.

If a man is cured of cancer but then declares bankruptcy, he is far from healed. If a woman is cured of breast cancer but can no longer have sex, she is far from healed. If a man or woman is cured of colon cancer but cannot get out of bed due to depression, they are far from healed. If patients experience ongoing peripheral neuropathy, the pain and loss of feeling in the extremities, it may affect their ability to work or even drive. Those who undergo treatment for head and neck cancer must often live with disfigurement and pain. If those issues are not addressed, the person is far from healed.

We were living as a result of new and growing options for treatment. But with that longevity, we were learning that the treatment that saved our lives could result in long-term and late-effects, such as fatigue, peripheral neuropathy, changes in physical ability and others. Late effects can appear 5, 10, 15 or even 20 years after treatment ends. These can also be more than physical; they can be financial, related to insurance or employment.

Depending on the treatment, late effects can be cardiac, pulmonary, hormonal or even a secondary cancer. Cognitive dysfunction, which may appear during treatment, may leave a patient with loss of the ability to work or care for family. Fatigue can be debilitating for the percentage of patients who struggle with it after treatment ends. Peripheral neuropathy, the pain and loss of feeling in the extremities, can impact the ability to work.

Ironically, most patients are unaware that they are at risk for these late effects, since few patients receive education about the drugs or other treatment they receive. Most finish treatment and are sent home with celebration — but no information about how to deal with a potentially diminished quality of life.

One of the 23 people who met in Albuquerque in October 1986 was an oncology nurse named Susan Leigh. Leigh, a nurse in Vietnam at the beginning of her career, was diagnosed with Hodgkin’s lymphoma shortly after her return in early 1972. Then in 1990 she was diagnosed with breast cancer, a newly identified result of the radiation therapy she had received for the lymphoma.

Leigh became a survivorship consultant, helping cancer centers understand the concept. Then in 1995 she was was diagnosed and successfully treated for early-stage bladder cancer, which may or may not have been a result of earlier treatments.

Knowing that she was at risk for heart problems from her early treatments, Leigh took follow-up guidelines to her primary care provider and requested baseline cardiac testing.

In 2013 she learned she had multiple problems with her heart that were almost certainly a direct result of her prior therapies. She points out that because non-oncology healthcare providers have so little knowledge of long-term and late effects, she had to educate her primary care physician on her follow-up needs.

The American College of Surgeons Commission on Cancer (CoC), a consortium of professional organizations dedicated to improving outcomes and quality of life for cancer patients, accredits cancer centers who adhere to a set of standards they set. There are currently more than 1,500 CoC-accredited cancer programs in the U.S. and Puerto Rico, representing 30 percent of all hospitals and more than 70 percent of newly diagnosed cancer patients annually.

In 2012, those standards were amended to include not only the psychosocial needs of patients but also patient navigation, distress screening and a survivorship care plan that details treatment and offers patients a blueprint for future monitoring. The new standards were to be implemented by 2015, a date that had cancer treatment centers howling in protest. In 2014 the implementation dates were changed to allow a phasein program that will include all accredited centers by 2019.

There were finally teeth in the demands to recognize cancer survivorship as a separate period of the cancer journey with its own issues and outcomes. However, despite the CoC standards, survivorship programs and care are still lacking in many areas. Just as each cancer treatment center offers its own template for care, each has to figure out how to integrate survivorship care into its design.

All of this means that survivorship care is still too little, too late and, in far too many cases, nonexistent. This leaves it in the hands of survivors to advocate for themselves and their caregivers to research what they need and where to find it.

The use of the survivorship care plan has been recommended since the Institute of Medicine (IOM) issued a report in 2006 recommending that every cancer patient receive a plan that is individualized to his or her care at the end of treatment.

Susie Leigh considers herself an example of why survivorship care plans are imperative as part of the end of treatment.

The plan should include not only a list of all medications received and their possible long-term and late effects, but also guidelines for monitoring their upcoming care and how to maintain their health. This recommendation was made in response to the 2005 publication from the IOM entitled 

From Cancer Patient to Cancer Survivor: Lost in Transition

 that recommended four necessary elements of survivorship care: prevention of recurrent and new cancers and other late effects; surveillance for cancer spread, recurrence, second cancer and assessment of psychosocial late effects; intervention for consequences of cancer and its treatment ; and coordination between cancer specialists and primary care providers to ensure that all of the survivors’ health needs are met.

Since then the number of care plans that have been developed by various cancer-related organizations has skyrocketed — with no one plan adopted universally by cancer centers. Also lacking is enough research that looks at the issues and what is needed.

This leaves survivors on their own in determining what plan to use and how to get their oncologist and/or nurse to provide the information that they may need down the road.

Like Leigh, don’t hesitate to raise these issues with your providers. Seek out other survivorship resources from national organizations, as well as advocacy groups and online communities specific to your tumor type. This will provide you the information and tools you need to be your own advocate and help you to navigate this vital, and enduring, part of your cancer journey.

Articles

Feature

Being diagnosed with cancer changes everything about your life. Yes, there are those few who have a simple diagnosis, breeze through treatment and then actually get back to some form of "normal" &mdash; the life they lived before they heard the words, It's cancer.

Cancer Survivorship: A New Way of Living

ONE OF THE MANY THINGS that excited us whenour company acquired CURE magazine last yearwas the opportunity to revive one of the group'ssignature publications, Heal magazine. The goalof this quarterly publication is to be a forum wherethose who have been touched by cancer can sharetheir perspectives and provide hope and inspirationto others on this same journey.

In this first issue, you will hear the voices ofpeople like you who are regular contributors toCureToday.com. These individuals share insightsfrom their own experiences navigating a cancerdiagnosis and its aftermath and offer practicalsuggestions to help you navigate life during, andafter, the "game-changer" that is cancer.

You will also find inspiring stories from thosewho have survived and thrived after cancer, includingour cover story by a long-standing friend toCURE, Kathy LaTour, a woman who exemplifies theempowered survivor yet understands all too wellthe many challenges survivors face.

As Heal evolves and grows, we want to hearfrom you about what challenges you face and howyou are meeting them. We hope that Heal will bea place where you draw strength from knowingthat you are not alone, a place where thoughtsand emotions are freely expressed, and — most ofall &mdash; a place where the exchange of insights andperspectives from your compatriots in the cancercommunity will help you to truly heal.

From the Chairman

We hope that Heal will be a place where you draw strength from knowing that you are not alone.

Living Well With and After Cancer

Sam Donaldson likes to look on the bright side of things.

At age 81, the veteran television newscaster, a survivor of melanoma, quips that he feels great, with all the energy of a 79-year-old.

All joking aside, that positivity has not only helped Donaldson through his experience with melanoma, but has also driven his involvement in efforts to help others affected by cancer. Over the years, he’s used his celebrity to help raise research funds, donated his own money and spent time encouraging doctors to temper honesty with the rosiest possible view when speaking with patients.

“We want optimistic doctors, but we want honest doctors,” says Donaldson, who addressed the topic with melanoma specialists in Miami, Fla., on March 7 as the keynote speaker for the 11th Annual International Symposium on Melanoma and Other Cutaneous Malignancies, sponsored by Physicians’ Education Resource — a sister company of 

“Put the best face on the situation,” he says. “If a doctor tells someone they have a 26 percent chance of living, they’re devastated. But if the doctor says, ‘I know people who’ve had exactly what you have who are walking around today,’ they’ll say, ‘Thank you, doctor,’ and go on.”

Donaldson’s doctor, Steven Rosenberg — chief of surgery at the National Cancer Institute in Bethesda, Md., and renowned as the father of immunotherapy – agrees.

SAM DONALDSON was the keynote speaker for the 11th Annual International Symposium on Melanoma and Other Cutaneous Malignancies, sponsored by Physicians’ Education Resource ®. [Photo by Dave Lam]

“It’s very important for any oncologist to always be honest with patients — to answer their questions in a straightforward, direct way, to not force information on them, but to provide them with any information that they request and need,” Rosenberg says. “How one does that is the difference between a good doctor and a doctor who needs improvement.”

Donaldson — who twice served as chief White House correspondent and was co-host of the shows “This Week” and “PrimeTime Live” during his 44 years with ABC &mdash; knows what it’s like to hear frightening news from a doctor. And he knows what it’s like to fear the worst.

The newsman discovered his cancer in the shower one day in 1995 — an egg-sized lump in his groin. It turned out to be stage 3 melanoma, which had spread from a suspicious mole removed from his right ankle 7½ years earlier. When removed at the time, Donaldson recalls, the mole had tested negative for melanoma in three different labs.

Upon finding the lump more than half a decade later, Donaldson kept quiet about the situation overnight, not wanting to scare his family. “What was I going to say to my wife: ‘Good night dear, I love you and, by the way, I have cancer?’”

Instead, he got the name of an oncologist from a friend and had himself checked out. When he learned he had melanoma, his characteristic optimism slipped away.

“Being uneducated in medical science, I’d heard that melanoma was a very bad actor, so I told my then wife that I thought I had about three months to live,” he recalls.

The real prognosis was a lot more promising, Donaldson learned after being referred to Rosenberg. After removing the tumor, Rosenberg assured Donaldson that his cancer had spread to only one lymph node, and that the surgical margins around it were clean. After his wide excision, Donaldson wouldn’t need any further treatment besides frequent CAT scans to check for recurrence.

“It couldn’t be better,” Rosenberg told him. “I think you have a good chance of living a long, healthy life.” While Rosenberg estimated Donaldson’s recurrence risk at 55 percent, he told the newscaster that, “With each day that goes by, your chances improve.”

Donaldson didn’t believe him, but he does now. Rosenberg recently announced that the two no longer need to see each other, except at cocktail parties.

Ultimately, Donaldson thinks his doctor’s optimism helped, even though he had trouble embracing it at the time.

That’s why he likes to encourage caregivers, “to the extent that you can honestly give people some reassurance and even some hope, do it” — even when patients are nearing the end of their journey.

“My friend Katie Couric lost her husband to colorectal cancer in 1998,” he recalls. “They had two small children, and when he was being treated, the children were alarmed. She said to them, ‘Great doctors are doing everything they can to make your daddy well.’ She reassured them, but she didn’t lie to them. I want caregivers — not just oncologists, but nurses and administrators who take data – to not say things like, ‘OK, where do you want to be buried?’ but to be aware of the fact that patients want reassurance and, if it can be given, they want hope.”

Of course, doctors aren’t solely responsible for cultivating that hope.

“Be optimistic,” Donaldson advises fellow patients. “I do not believe that the mind, the personality or an optimistic versus a pessimistic attitude can cure cancer, but at the margins I do believe that the better we feel about ourselves and the world around us, the more energy we seem to be able to generate. As a result, we may feel better.”

Since his experience with cancer, Donaldson has set out to learn more about melanoma, and to help others affected by that cancer and others.

“The cancer club into which I was inducted in 1995 is not a club you ask to join. It’s not like a swanky committee looks over your application. Once in, everyone wants to do their part to keep other people out,” he says. “I don’t think I was a coldhearted person who didn’t care about other people’s health miseries before, but I’m much more aware now that I’ve had my own experience with a dread disease. You want to do what little you can to make things better in the future.”

Donaldson has done that as chair emeritus of the F. Lee Moffitt Cancer Center Board of Advisors and of the National Comprehensive Cancer Network Foundation’s Board of Directors. He is an honorary member of the Wistar Institute’s Melanoma Research Center Advisory Board, and an emeritus director of Research!America, a group that promotes prioritizing research that is focused on improving health.

Donaldson remembers exactly why he wanted to work with Moffitt. The decision came out of a meeting with immunotherapy expert Jeffrey Weber, a senior member of the center, and his colleagues.

“I asked, ‘What do you see as your goal here from a research standpoint?’ They said, ‘To cure cancer.’ I said, ‘You’re my people.’ ”

In addition to donating some of his personal funds to cancer research, Donaldson is dedicated to attracting additional money to the cause.

“I used to cover Congress in the ’60s when I first came to Washington, and I remember, in the House, somebody got up and said, ‘You can’t help this by throwing money at it.’ I tell people, ‘Yes, you can.’”

That’s why Donaldson was incensed when the federal government allowed budget cuts to occur by sequester in 2013, meaning that slashes of 5.1 percent were made across the board to most programs and agencies, including the National Institutes of Health and its programs for cancer research. As a result, he says, the percentage of promising peer-reviewed cancer research grant proposals that actually receive NIH funding remains quite limited.

“I know Republicans and Democrats hate each other, but life is about making a deal and going forward even though neither side gets what it wants,” Donaldson continues. “These days, the idea seems to be, ‘It’s my way or the highway, and if you disagree you’re not a good American — and can I see your birth certificate?’”

Nonetheless, there’s been progress in the treatment of melanoma since Donaldson was diagnosed, including the maturation of the use of interleukin 2 and of other immunotherapies, including tumor- infiltrating lymphocytes (TILs), as well as exploration into the use of chimeric antigen receptor (CAR) T cells, or lab-engineered cancer-killing immune cells.

Donaldson is proud to have helped drive those improvements.

“Sam has been incredibly generous in giving his time whenever asked to give talks to advocacy or funding groups,” Rosenberg says. “With the kind of audience and respect that he has, Sam has made a big difference in people’s understanding of what it takes to make progress and the resources that are needed.”

Among his other efforts, Donaldson has helped to support Rosenberg’s research, both by participating in one of the doctor’s clinical trials and by donating his own money.

As part of the trial in 1995, Donaldson’s tissue was cryopreserved in case it was needed later to create a personalized immunotherapy to treat a recurrence. The treatment would have involved the mass multiplication, in a lab, of naturally occurring, cancer-attacking TILs taken from Donaldson’s body. If needed, this army of T cells would have been given to Donaldson intravenously. The technique is now sparking complete durable regressions in 20 percent of those with metastatic melanoma who try it, and it’s routine practice to save tissue from all such patients, Rosenberg says, just in case.

“In our last trial, 93 patients were followed for more than five years,” Rosenberg says. “Twenty had complete regressions from the beginning and, of those, 19 remained completely disease-free. We believe immunotherapy can cure patients with metastatic melanoma, and we are trying now to extend that to other cancers.”

Donaldson is grateful for that research, knowing it will help many who feel as he did when he was diagnosed: not at all done with life.

In 53 years as a Washington, D.C. reporter, Donaldson — who now lives in Albuquerque, N.M. and owns a 27,000-acre ranch in the state – was always where the action was. He was 5 feet away when John Hinckley Jr., shot President Ronald Reagan in 1981. He watched President Jimmy Carter put together a peace treaty between Israel and Egypt; covered Vietnam, the first Gulf War and Watergate; and saw the Voting and Civil Rights bills passed.

“Was it boring? Are you kidding? It was exciting all the time,” he says. “I would have paid them, if I could have afforded it, to be able to do what I was able to do.”

When Donaldson was diagnosed, it was those experiences that came to mind.

“I wasn’t afraid,” he says, “but I was very sad if I was going to have to check out. I was enjoying life and was happy and felt pretty healthy—if you don’t count the melanoma.”

When Sam Donaldson was diagnosed with stage 3 melanoma, he temporarily lost sight of his optimism. But positivity is central to his advice to fellow patients with cancer:

; it certainly can’t hurt the way you feel, and it just might help.

 from different experts in the field, and then follow what you determine to be the best medical advice.

 “Public discourse about cancer says, ‘Hey, you’re not alone. There are millions of us who are cancer survivors; why don’t you join us?’ It takes away the dread shroud that covers this. Ignorance always comes when people don’t want to, or can’t, learn the facts.”

Shepherd someone else through the journey.

 “My cancer was diagnosed on a Friday, and it got in the papers. My assemblyman at the time, Connie Mack — I’d never covered him, and we weren’t friends &mdash; called me and told me he’d survived melanoma. ‘I’m alive and healthy,’ he told me, ‘and you’re going to be fine.’ You can’t imagine what that did for my spirits. I say to people, if a friend or stranger has melanoma, call them up and tell them, ‘Here I am!’ It gives them a real lift.”

Optimism helps when cancer is diagnosed, advises TV newsman and melanoma survivor Sam Donaldson.

Spring 2015

Cancer Survivorship: A New Way of Living

Living Well With and After Cancer

Accentuate the Positive