The number of people surviving cancer has significantly increased over the past 20 years. With survivorship, however, comes a different set of dayto- day challenges among some of these individuals. Besides learning how to return to a “new normal” life, many cancer survivors may still experience both physical and emotional side effects of the disease.

Michael Feuerstein, Ph.D., M.P.H., knows all about these challenges as he is a 15-year brain tumor survivor. In 2002, his world was turned upside down when he was diagnosed with anaplastic astrocytoma, a rare malignant brain tumor for which the cause is still unknown. He was at stage 3 and given three months to a year to live. Feuerstein underwent surgical resection, followed by maximum brain radiation treatment and 12 months of chemotherapy.

Now, Feuerstein has taken on a personal mission to help other survivors find resources that weren’t available when he was going through the same. Shortly after his diagnosis, he switched focus from clinical psychology to cancer survivorship. He has edited books for health care providers, co-wrote a book for survivors and created the Journal of Cancer Survivorship: Research and Practice, which is aimed at health care professionals who need to help patients after cancer diagnosis and primary treatment.

What has been accomplished in cancer survivorship over the last decade?

“My focus was on disseminating information to other cancer survivors and health care providers that would help improve the health, function and health care that survivors receive, as well as their overall quality of life,” says Feuerstein. In an interview with Heal ®, he discusses what has been accomplished thus far for survivors, what is still needed and what his next steps are.

There is a greater emphasis on adolescent and young adult cancer survivors. Before these individuals were included in the larger group of cancer survivors and the focus wasn’t related to the unique problems that they experience.

There has also been a greater emphasis on the older cancer survivor. That is the individual that is 65 years old or above, which turns out to be the highest percentage of cancer survivors. There is more research and more treatment options for these individuals, too.

Next, there has been the development and implementation of new clinical tools such as the survivorship care plan. Care plans like this didn’t exist when I was first diagnosed. This clinical record organizes the type of treatment delivered for a specific cancer diagnosis and the expected challenges that individuals might have later on in life. This was not communicated to patients or other doctors in the past. However, while it is informative, it is still an open book in terms of learning what it really does to help improve outcomes such as long-term health, function or well-being.

Where can survivors find these resources?

What challenges do cancer survivors face today?

There are also new treatment guidelines for cancer survivors that have been published by groups such as the American Society of Clinical Oncology (ASCO) and the American Cancer Society (ACS). These at least provide some kind of general framework to organize follow-up treatment and to address problems that cancer survivors might have such as fatigue, pain, anxiety, depression and poor diet.

Websites of the National Coalition of Cancer Survivorship, National Cancer Institute (NCI), ACS, ASCO, as well as the major NCI-affiliated cancer centers in the United States. 

One thing that many, not all, survivors experience over time are cognitive limitations. Problems with memory, attention and decision-making. They tend to occur as a result of the treatment — mainly exposure to chemotherapy or in the case of brain tumor patients, the tumor and direct radiation to the brain.

These problems can continue and they can interact with aging, which we know sometimes can also contribute to problems with memory. It’s a challenge that many people have and one implication is that it can influence a person’s ability to remain at work. Not necessarily return to work, but to remain there.

There is research that shows that after a couple of years there are certain cancer survivors that just can’t make it in the workplace. It might be because of these cognitive problems or it might be that they just decided to just stop working to pursue other interests. But there are plenty of people that need to and want to work. So, how do you deal with that? Very carefully. There is a law called the Americans with Disabilities Act. Not a foolproof law and it doesn’t mean employers must adhere to every aspect of it. If employers and employees can’t find reasonable accommodations for these individuals or they are deemed to be too expensive, employers can make the argument that they just can’t accommodate the cancer survivor and they just “let them go.” Of course, that influences income but it also can affect a person’s support system and self-esteem or self-worth.

Emotional changes can occur during and after treatment like stress, anxiety and depression, and these can affect relations with others and work ability. But the positive thing to keep in mind is that those changes can be treated either with medication or specific kinds of counseling techniques. Over time, these emotional reactions tend to decline and stabilize, although often they are never quite down to where they were beforehand.

Also, many people after cancer treatment begin to experience fatigue and decreased activity level. There may be a tendency to become very sedentary, not really want to exercise or even takes walks and not follow the kind of dietary control they may have had beforehand. Oftentimes, what happens is these cancer survivors start to gain weight. Weight has been shown to be a predictor of recurrence in certain cancers.

There are opportunities within cancer centers to get more involved in all sorts of exercise for cancer survivors to improve this problem. In many ways people start to think, “Well, I had my major health issue, so why do I have to exercise or watch my diet?”

They feel like they are justified to not worry about health anymore. It’s like, “OK, I had the worst thing that could happen to me.” But that is not necessarily true because cancer survivors just as others can develop all sorts of major health problems.

What does the future look like in this area?

In fact, there are studies that show that cancer survivors don’t necessarily die of cancer, but they die from preventable disease like heart disease or diabetes. This fact relates to the importance of taking care of yourself as a survivor, not only regarding the lifestyle aspect, but also taking a more active role in making sure that you receive the kind of health care that keeps you as healthy as possible. Also, it is important to realize that conventional health care might not always be the best way to go with all your health care needs. There might be some alternative care approaches like acupuncture, meditation or now there are cancer centers that offer and continue to study approaches such as tai chi. There are many approaches that people can take to complement conventional treatment.

Over the past decade there has been emphasis on the cancer survivor. There are providers of many types (oncologists, oncology nurses, family doctors and nurses, social workers, psychologists) that are skilled in the long-term care of these survivors. But in general, oncologists, as they should be, are focused on the treatment of cancer and not always the secondary problems that can occur. So, the implementation of several innovations we discussed are still not available in many practices. While challenging, it is important to advocate for yourself and ask for referrals to others who can help. They might not be your typical health care provider but may even be the YMCA.

I see the comprehensive management of cancer survivors improving as family doctors and other primary care providers learn more about survivorship and the problems that various types of survivors have. More and more of quality care for cancer survivors will be nested into everyday care. You have to keep in mind that it’s only been in the last 15 to 20 years that there has been such a rise in people living after cancer treatment. The trend is up, so in the future I think the care of cancer survivors will be more and more routine, not very different from how a broken arm is managed now.

If you had one takeaway message for those in the 

What's next for you in terms of your work with cancer?

But unfortunately, I do think the overall health care of cancer survivors will get worse before it gets better because all the statistics show that as baby boomers move into their seventies and eighties cancer incidence will increase tremendously, and, as a result, cancer survivors will increase because treatments are more effective. So, the challenge is to get these approaches implemented into everyday care in a timely manner, so providing quality care for these new cancer survivors doesn’t become a major public health problem.

It’s very important for the individual following treatment for cancer, when possible, to take some control over his or her situation and not totally delegate it to a health care provider or a caregiver. It’s the idea of empowerment and self-management. Many of us rely on our health care providers or that somehow the “health care system” will magically take of us. There is evidence that tells us this may not be the wisest approach to take with our long-term health, function or well-being. There is a need to take more responsibility for some of the problems that people can experience after diagnosis and treatment for cancer because the significance is much greater for you than anyone else.

I want to continue doing work with cancer survivorship. We have a new communication tool that we developed over the past four or five years, myself and three other colleagues at the Uniformed Services University of the Health Sciences, that can help breast cancer survivors identify 18 different common problem areas experienced after diagnosis (for example fatigue, depression, exercise, diet, work, finances) and treatment. It also lets people know where they stand on various skills necessary to pursue quality health care. We recently developed the tool into an app called the Cancer Survivor Profile (CSPro). This CSPro graphs a single patient’s scores on the problem areas and compares her scores to people who have been out of treatment with breast cancer for a couple of years. They can get an idea with their nurses where they stand and what they need to do.

It is not available for wide scale use. We are still evaluating its effectiveness. I’m also working on a CSPro for young adult survivors. Currently, the CSPro-Breast Cancer version is translated into Chinese and research is being completed on the use of the tool in China and Hong Kong. I want to help mobilize people, so they can better manage what’s going on over the long term.

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A 15-year brain tumor survivor offers advice and talks about advances since his diagnosis.

The Present and Future of Cancer Survivorship

‘Dream Come True’: Multiple myeloma survivor Jeff Goad (middle) and brothers, David and Brad, ran the Boston Marathon to raise money and awareness. - TOP: GLOWONCONCEPT / FOTOLIA; GOAD BROTHERS: COURTESY JEFF GOAD

An athlete and avid runner, it was hard to ever find Jeffrey Goad, a resident of Chicago, sitting still — even after he was diagnosed with multiple myeloma in the spring of 2010, just one week before his 50th birthday. After his first stem cell transplant, Goad was trying to get up and move as soon and as much as possible. “I remember taking my IV pole and taking laps around the hospital floor. I’d try to do at least 10 laps a day,” he said in an interview with 

®. Those laps turned into fighting insurmountable fatigue to climb the stairs to his second-floor condo, to take a walk around the block, to get through a one-mile walk, until Goad was finally able to build back up to doing what he loves — running marathons.

“The things that jumped immediately into my mind was ‘What’s the quickest way I can get back to feeling normal?’ It was my marathon mentality of ‘I’m starting here today, but I can’t just go run that 26.2 miles tomorrow,’” Goad said. “I need to work into that kind of physical and mental mindset.”

Goad had two stem cell transplants and was deemed to be in remission in March 2011. That fall, he ran the Chicago Marathon with his brothers Brad and David.

“I didn’t think I’d ever run again, let alone do another marathon,” he admits. “It was like getting to relive my first marathon all over again.”

Back in his competitive racing days, Goad constantly pushed his limits in events like these, trying to beat his previous times and qualify for bigger and better races. He remembers a time when he was just seconds away from qualifying for the Boston Marathon. Now, he was able to focus on putting one foot in front of the other and finish the Chicago Marathon — which he did. In 2012, he ran the marathon again, following that up with the New York Marathon in 2013 and the Monterey Half Marathon a year later. In January 2016, he took a break from running to climb Mount Kilimanjaro with the Moving Mountains for Multiple Myeloma team benefitting the Multiple Myeloma Research Foundation (MMRF).

When Goad received his diagnosis, he was told that the average life expectancy for a patient with multiple myeloma was three to five years, a sobering statistic that he said was, “like taking a two-by-four to the head.”

 “I didn’t believe that that was ever going to be my path,” he said. “I was going to do what I needed to do and be OK.” Goad’s bout with cancer was different than many others’, so much so that his oncologist was first taken aback when he told her that he recently went on a long walk or run. “I remember my doctor looked at me and said, ‘You what?!’” he recalled. “She knew I was not going to be the standard patient.”

While he may be atypical compared with other patients living with multiple myeloma, Goad was still able to connect with them and their families, especially those newly diagnosed. He would offer words of wisdom to the survivors, while his wife, Ramona, often spoke to the spouses and loved ones to offer guidance on the journey they had ahead of them.

“I find it extremely gratifying that I can be a guide for them and help mentor them through the process,” he said, mentioning that he never thought he would become such a large inspiration to the cancer community. “Complete strangers have been impacted by the things I’ve done in ways I could have never imagined. That was the most powerful part of the journey for me. I didn’t expect that, but I fully accept it and now feel that responsibility.”

One piece of advice he offers to others with multiple myeloma is to take charge of as much of your life as possible, because with a disease like multiple myeloma, it is easy to feel like you have lost control of your world between treatments and doctors’ appointments. One thing that Goad is adamant about is being referred to as a myeloma “survivor,” not “patient.” “As a myeloma survivor, that’s the right feel and the right tenor for me. It’s somebody’s doing something to you versus you having control,” he said. “It’s so amazing how having some control over your life helps your vantage point. You’re not misbehaving. Guess what? You’ve got choices.”

Last October, Goad was notified that his application to run on a charity team — the MMRF &mdash; was accepted. After decades of dreaming about it, he was finally going to run the Boston Marathon in April 2017.

“I knew how rare and highly coveted the charity bits were,” he said. “It was a dream come true because as a younger guy, I flirted with qualifying and just missed it by a minute or two.”

In November, however, he found out that his multiple myeloma had relapsed and he would need more treatment. That did not stop him from running.

“Training for a marathon — piece of cake. Because it’s such a piece of cake, why not make it more challenging?” Goad laughed. “I had a little extra training program, and it’s called chemo cross-training.”

 Throughout last winter, he would receive chemotherapy injections on Monday. By Wednesday, he would be doing speed work with the local Chicago Adidas running club. Saturday meetings were for long-distance runs.

Goad wasn’t the oldest person in the group, but he undoubtedly was the slowest. And he was OK with that — for both training and the race.

“I wanted to go do it the best I could, considering all the physical limitations,” he said. “I just wanted to start, and I wanted to finish the Boston Marathon. The notion of time was not in the equation.”

On race day, Goad admits he was nervous about finishing, especially since his longest run during training had only been about 15 miles. But he was even more focused on enjoying the day with his MMRF team, including his brothers.

“I turned it into enjoying the experience, the community, the sights, the smell and the sounds that are associated with these races. Not just the end. I didn’t want to be so overly focused that I missed all those things around me,” he said, noting that running as a part of the MMRF team, raising money and awareness for multiple myeloma, added extra meaning to the day.

In the past seven years, Goad’s team — himself, his wife and his brothers &mdash; has raised nearly $120,000 for the MMRF. And he won’t stop there. In 2018, he is planning to climb Mount Everest with the Moving Mountains for Multiple Myeloma team as he continues to think of more ways to be active and raise money and awareness.

“This is what we love to do. It [is] the most natural thing that we could do,” he said. “It does become ‘What’s the next adventure?’ People do expect adventure out of us now.”

People

"I wanted to go do it the best I could, considering all the physical limitations. I just wanted to start, and I wanted to finish the Boston Marathon. The notion of time was not in the equation."
&mdash; JEFF GOAD, multiple myeloma survivor

Multiple Myeloma Survivor Takes on the Boston Marathon

The last treatment has ended. It’s time for balloons and the ringing of the gong, either literally or figuratively. Everyone claps as you make your way out of the treatment center and head for home. The last few months have been filled with surgery, immunotherapy, chemotherapy, and radiation or some combination thereof. You are ready for it to be over so you can resume your life. Yet, on the way home, you can’t help but think, “Who is watching me now?”

It isn’t even a month later when the ache in your elbow is no longer a result of bumping it against the kitchen counter. You are convinced the cancer is back and you are dying, so you call for an appointment to confirm what you know to be true. Until you meet with the oncologist, which will confirm that the aching elbow is just that, you don’t sleep and dying consumes your thoughts.

The reality of cancer is that it can return in the same location in the body or metastasize to another. As a result, the fear of cancer recurrence (FCR) can produce situations like the one above, a scenario that seems outrageous but may be experienced to a greater or lesser degree by up to 97 percent of patients with cancer, depending on age and whether children are involved, says Susan Krigel, Ph.D., a clinical psychologist with the Midwest Cancer Alliance (MCA) at The University of Kansas Cancer Center (KUCC) in Kansas City, Kansas.

Krigel has studied FCR as a specialist in psycho-oncology, which focuses on the mental health of patients with cancer. After seeing the levels of anxiety in her patients, she chose to explore both the causes and possible solutions for those experiencing FCR through the MCA, the outreach division of KUCC that offers cancer centers across the state access to clinical trials and supportive care for their patients. “I have appointments with individual patients with cancer on interactive televideo,” she explains. “Many patients with cancer who live in Kansas have very little access to any specialists, including psychologists or those with experience in oncology.”

Fear of recurrence manifests in differing levels of anxiety that result in intrusive thoughts about the cancer returning, says Krigel, pointing out that those with the highest levels of fear are likely to be parents of small children. “We know that high levels of anxiety decrease people’s quality of life. Often, if someone is the parent of a young child, the anxiety disrupts sleep and affects cognitive functioning, and really means a decrease in overall health and quality of life.”

Ironically, high levels of anxiety can impede the ability to parent while low levels may motivate a patient to follow guidelines for healthy living, such as diet, follow-ups, smoking cessation and exercise, Krigel says.

Despite its prevalence, FCR has been poorly addressed in clinical care, with few studies offering options for coping.

In 2014, Sara Hughes, Ph.D., was about to embark on a new life as a college professor when she was diagnosed with breast cancer at age 33. “I had to turn down a job offer the same week I was diagnosed,” she says. “I couldn’t teach full time, but I did work part time while undergoing 16 rounds of chemotherapy and then a double mastectomy.”

 For Hughes, the decision to undergo a double mastectomy came from FCR and her age at diagnosis. “I wanted to be aggressive so I didn’t have to worry about it coming back.”

Despite everything going well, Hughes says she still has panic attacks, thinking she feels something that isn’t there. She goes to the oncologist every three months, but still finds herself responding to “triggers” that result in a panic attack.

“I had a bad panic attack when a friend, who had gone through chemotherapy at the same time as me, died. We finished chemotherapy, and her cancer came back in two years. She didn’t tell me. I leaned on her a lot when I was sick. My mom, twin sister and husband helped, but she was the friend going through it at the same time.”

Hughes says the friend she lost was the person who gave her important information about diet and other tips, such as which toothpaste to use to prevent mouth ulcers and the name of the person who had wigs that looked real. She found a therapist the week after her friend died and began attending regular one-on-one sessions to talk about the fears that accompanied her friend’s death. She wasn’t comfortable in a support group and came from a family that didn’t talk about negative emotions.

Looking for professional help is the correct decision, Krigel says, because when the fear can’t be managed in a few weeks, it’s time to bring in the experts. Hughes knew she needed to talk to someone from the outside since her family dynamic made it difficult to talk about painful topics.

In addition, Hughes has found exercise and writing to be good forms of therapy. Writing poetry, she says, is very beneficial. “If I am in a situation where I can’t get to the gym, I write poetry. If it isn’t publishable, hopefully it will be something I can turn into essays or articles for other women.”

Hughes doesn’t have children, a decision she and her husband made early in their marriage, so her fear is not about leaving children but about being a burden on the people she loves should she become ill, she says. “I am very independent, and my other fear is that I won’t be able to do what I want to do. I am a writer and just got my first book of poetry accepted for publication. Cancer took a year and a half of my life, and I don’t want to lose any more time.”

Amberly Connolly, already with a toddler at home and pregnant with twins, found a lump in her breast at age 28. Reassured it was nothing by her doctors, the Omaha, Nebraska, nurse learned when the twins were 12 weeks old that it was cancer. She had a double mastectomy, six months of chemotherapy and a year of Herceptin (trastuzumab). At the same time, she was focusing on her master’s degree in nursing Connolly went on to have three more children, in addition to adopting her 9-year-old niece. Now a mother of seven with a doctor of nursing practice, she focuses professionally on issues of parental cancer, such as the need for respite care for parents and children.

 She also has been active in Camp Kesem, a nationwide community of camps led by college student leaders that support children through and beyond their parent’s cancer. However, her fear of recurrence began to increase as she met other young mothers through the camp and realized how often they died from cancer.

“There was a lot of confusion when I was diagnosed. No one breaks it down,” she says. “In my mind, I had a 95 percent chance of survival, which sounded good, but as time went on, I met more women with breast cancer and others diagnosed with recurrence, and then I realized that 30 percent of all women diagnosed with early breast cancer have a chance of recurrence.”

Her fear built with more knowledge about women and disease. Then, she had a bout of pneumonia after the birth of her second post cancer baby, which became cancer in her mind, she says. “My triggers have become anything wrong with my health or stories of other women with similar diagnosis or when a young mother dies.”

She says her coping mechanism is to try to make every day count, which is important whether you have been diagnosed or not. “I trust that there is a plan for my life. It changes my perspective.” She follows up quickly with anything that appears abnormal. She can’t get life insurance because of the cancer and a preexisting condition of epilepsy, so she fears for her husband coping if she dies.

Her children, the oldest of whom is 12, spend time at Camp Kesem in the summers and know other children whose parents have had cancer. “It gives them a perspective of how serious cancer is, but they have not let me know they see that.”

Krigel says triggers are normal and, while they are different for every person, understanding them can lead to taking preemptive steps to manage the fear before it gets out of hand. “It can be a smell, an anniversary date or hearing someone passed away,” she says. “This is normal, but if the feelings persist, it may be time to call your health care professional to identify the fear and take steps to cope and receive affirmation that you are not losing your mind.”

Krigel says she gives patients some coping recommendations that can be applied no matter where they are, with the most important being an understanding that informed patients are empowered to make changes that help them manage FCR. Study results have demonstrated that taking action by working toward wellness — such as increasing exercise, eating healthier, being mindful and doing yoga &mdash; is helpful.

She recommends to her patients that they do something they enjoy daily, even if it is only for 15 minutes. Be social and work toward having meaningful relationships with others. Work on being comfortable with uncertainty.

Krigel says it is important to get an accurate understanding of your possibilities for recurrence and what symptoms you need to follow up on. If you have a plan, the future may not be as scary. Talk to your oncology team about what you can do to lower your risk of recurrence so you feel like you are in control.

“Being informed about FCR and what you can do about it can empower you to take steps toward lessening it, working toward wellness and learning to coexist with a low level of FCR,” she says. “The goal is to manage FCR by making it work for you.”

Find ways to make fear of recurrence part of your cancer journey.

Facing the Fear of Recurrence

You would think that I’d know the exact date of the last time I received a chemotherapy treatment, but honestly, I don’t remember.

I’m sure the day was marked on my 2010 calendar, but that calendar, like so many other reminders of that year, is long gone. The things I did keep — the hats my sister sent me, the wigs my parents helped me pick out &mdash; are shoved into the dustiest corner of my closet where I am sure to not accidentally run into them in my early morning scramble to get dressed.

It’s not that I forget that in 2009 I was diagnosed with ovarian cancer, which was removed (along with anything else that wasn’t nailed down inside me) in early 2010, with 18 weekly chemotherapy treatments following. It’s more like I just don’t think about it. Cancer is a place I visited once, and just never care to go to again. Like the panhandle of Texas. But I still have my journal from that time, with entries like this:

Questions from the Greek chorus of patients with cancer puncture the silence of the waiting room: What stage are you? What’s your protocol? These patients like nothing more than to talk about being patients with cancer. I understand that for them, turning cancer into benign small talk is comforting, soothing and helpful. To me, it feels like I’m going through rush week at the sorority of ovarian cancer, and I’ve never been much for sororities.

My response to their questions is brief and vague: ‘I’m stage 3; my drug protocol is Taxol, maybe, or Avastin. I’m fine, thanks.’ A testament to my Irish-Catholic upbringing, I’d rather have my eyes poked out with IV needles than discuss private details about my real problems.

It’s not just Celtic privacy that keeps me from engaging in chemo-chat. For me, cancer is something to get through and beyond. I am a good patient who does what my genius doctor and heaven-sent oncology nurses tell me, but I don’t want to talk about it.

Cancer is a thug that caused me a year’s worth of inexplicable pain and scary visits to various doctors, none of who could figure out what was wrong. Because of cancer, my daughter will always be an only child. She will never know the joys or tortures of having one sibling, let alone the eight that I have. She will never have one sister, as I do, who is as close and vital as her own skin. No, cancer and I are not on speaking terms.

And there is no way I am ever going to call myself a cancer survivor. I refuse to define myself in relation to cancer. Give me “youngest child” or “Clevelander at heart” or “unable to return library books on time” any day. Cancer is a bully, and I have been taught to ignore bullies, not to label myself as having escaped their cruelties.

Years post treatment, my feelings are the same. My nowbiannual checkups go smoothly, with me answering the questions from the intern du jour who comes into the check-up room with clipboard in hand and nerves on his or her face, with my “yes” and “no” responses in all the right places. My screens come back with phrases like “grossly unremarkable.”

If I were a liar, I’d tell you that after cancer, my perspective on life was so changed that I now never worry about the small stuff and I enjoy every moment of every day. But life after cancer is still life, with its moments of joy and banality. Just because I had cancer, it doesn’t mean I need to enjoy cleaning bathrooms or going to staff meetings.

The only main side effect of all of this seems to have fallen on my daughter. She was only 3 at the time, but remembers enough that when we are listening to the radio in the car and a commercial with the word “cancer” comes on, she says, “Uh, Mommy, can you turn it down?” When that happens, for both of us, I change the radio station and drive forward, without looking back.

Why one woman will not let the disease define who she is.

Summer 2017 | Heal

The Present and Future of Cancer Survivorship

Multiple Myeloma Survivor Takes on the Boston Marathon

Facing the Fear of Recurrence

Cancer Is Not Who I Am

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