STACY VERNER

THE FIRST SURVIVORSHIP CARE plan tailored for patients with gastrointestinal (GI) cancers provides a road map for the journey, from first diagnosis to future follow-up.

The Treatment and Survivorship Care Plan was devised by the GI Cancers Alliance, a group of advocacy organizations, health care professionals and industry partners working to boost awareness and education about these cancers and to advocate for their prevention, treatment and cure.

The downloadable plan, which can be customized based on type of GI cancer, is available for free on the group’s 

 care plans exist, but, with the exception of one that is specific to colorectal cancer, none focus on the needs of people affected by disease of the GI tract: anal, bile duct, colorectal, liver, rectal, stomach, appendix, esophageal, gallbladder, pancreatic or small intestine cancers.

“A Treatment and Survivorship Care Plan is a complete record and documentation of a patient’s cancer journey — from diagnosis into long-term survivorship,” the alliance’s document states. “Just as we are all different and unique as individuals, no two care plans will be the same. Our goal is to help facilitate a dialogue between patients and their health care teams as care plans are completed together.”

In 2005, the Institute of Medicine recommended that each cancer patient, upon completing treatment, be equipped with a survivorship plan for future care.

Centers that want accreditation from the Commission on Cancer are required to provide these plans, complete with treatment summaries and recommendations for follow-up and surveillance. Yet, 92 percent of patients with GI cancers who responded to the alliance’s nationwide 2016 survey did not have treatment or survivorship plans, the organization reported.

“Fifty-one percent didn’t know what a survivorship care plan was. Another 23 percent said their health care provider never mentioned the need for one,” says Martha Raymond, co-chair of the GI Cancers Alliance and founder of the Raymond Foundation, who worked with the alliance on its survey of 507 patients/survivors.

Such plans summarize the details of the cancer diagnosis and treatment and lay out action steps for areas needing follow-up — for example, management of long-term functional issues caused by surgery, such as colostomy bags; potential cancer recurrences; and psychosocial concerns. The plans also provide the information that can help guide new care providers on optimal and timely treatment if medical problems or recurrences develop. The alliance’s plan for survivors of GI cancers includes a 5 1/2- page glossary of cancer and treatment terms. It also provides space for patients or survivors to fill in information, including:

• A list of all health care providers, from oncologists to nutritionists

• Notes about the diagnosis and initial genetic testing results

• Post-treatment goals and plans, including surveillance and visits to doctors

• Available resources and support services

“When someone is diagnosed with cancer in general, that feeling of control is gone,” Raymond told

® in March 2017. “But doing something as easy and as simple as putting together a binder of your health care information, bloodwork, scan results and appointment follow-ups … gives the patient that feeling of control again. They start to feel like ‘OK, I got this.’”

The document also features a small collection of quotes from the survey, which focused on the unmet needs of patients with, and survivors of, GI cancers.

“I am anxious and scared all the time,” one respondent wrote. “I don’t feel like I have any control of my life, and I need to figure out a way to balance my emotions.” Another suggested that survivors develop “a road map to help (you) determine next steps now that treatment is over.”

The alliance, which is composed of over 25 advocacy groups, an academic center, a health care professional advisory board and six sponsor groups, was founded in 2015 by the Ruesch Center for the Cure of Gastrointestinal Cancers at the Georgetown Lombardi Comprehensive Cancer Center in Washington, D.C. Its website also offers information on each GI cancer type and its treatments, lists of organizations specializing in each disease, and a general resource library.

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Every survivor of a gastrointestinal cancer has unique follow-up needs. A ‘road map’ for this process can help.

All Over the Map When It Comes to Survivorship

JILL FELDMAN says her lung cancer diagnosis helped her realize she needed to get control of her stress to maximize her life. - PHOTO BY CARISSA HODGES

Jill Feldman began her journey with lung cancer 34 years ago, although not as a patient.

“When I was 13 years old, I had a grandparent on each side of the family die within weeks of their lung cancer diagnosis — and within weeks of each other,” Feldman says. “Six months later, my dad was diagnosed. He died three months later.”

Feldman later lost her mother and her aunt within two years of each other, also both to lung cancer.

“Needless to say, I was bitter and angry,” she says. “I was 28 years old, pregnant with my second child and basically orphaned by this disease.”

Over the years, Feldman’s stress continued to mount. She had two more children; became the primary caregiver for her brother, who suffers from schizophrenia; and worried about everyday stressors like work and finances. However, her family history with lung cancer loomed largest of all.

“My greatest fear was that my four kids would go through what I went through,” she says. “Stress has certainly been kind of a roller coaster ride for most of my life.”

When her fears came true in 2005, Feldman couldn’t help but wonder whether all that stress contributed to her own non-small cell lung cancer (NSCLC) diagnosis. Although her personal experience is purely anecdotal, a recent study published in the 

 which examined major stressful life events and the risk of developing the disease, suggests she may have been on to something.

Everyone experiences stress, which Syed H. Jafri, M.B.B.S., assistant professor of medicine in the Division of Oncology at McGovern Medical School in Houston, describes as the body’s response to a perceived physical or psychological threat. “When you perceive a threat, your body reacts by trying to restore homeostasis,” Jafri says. The body releases adrenaline, which can actually be beneficial during acute, or “on the spot” stress, because it helps the body function at a higher level in the short term. “But if that response is activated for weeks or months on end, that can have negative effects on your body, which then affects your immune system,” Jafri says.

Chronic stress results from repeated exposure to situations that lead to the release of cortisol, a stress hormone. Many scientists believe that the stress response system was not designed to be constantly activated, which could lead to the breakdown of bodily systems.

Jafri first wondered about a correlation between chronic stress and lung cancer when he watched a friend’s parent — a nonsmoker &mdash; die from the disease two years after the unexpected death of that person’s spouse.

Several years later, Jafri took note as actor Christopher Reeve suffered a paralyzing injury. Within two years of Reeve’s death of cardiac arrest, his wife, another nonsmoker, suddenly died of lung cancer.

“It intrigued me,” Jafri says. “Are these two events linked?”

To answer that question, Jafri conducted a study that assessed the amount of stressful life events experienced by patients with lung cancer and controls of similar age, gender and lifestyle.

Patients were enrolled between May 2015 and December 2016, and 301 people were included in the final analysis. In both groups, the majority were men in their 60s who had smoked.

“Over their lifetime, there was no difference between the two groups,” Jafri says. “But those with lung cancer had more stressful life events within the last five years before their diagnosis.” Jafri and his team found that for patients with cancer, the most common of those situations included the life-threatening illness of an immediate family member and retirement.

Feldman’s grandparents died in 1983. Her father followed six months later. Her mother passed away in 1998, then her aunt in 2000. Five years later, Feldman received troubling news from a routine computerized tomography, or CT, scan: Two nodules were growing on her lung.

She underwent testing for the T790M germline mutation, which can predispose someone to developing lung cancer. It came back negative.

To measure stress, many in the medical field rely on the Holmes-Rahe Life Stress Inventory, a scale that rates life events based on their potential stress level. Events like “death of a spouse” sit at the top, while more common ones like “traffic tickets” sit at the bottom. “Death of a close family member” sits fifth from the top.

Over the course of her life, Feldman experienced the death of five close family members; within five years of her diagnosis, other stressors included “major changes in the health of a family member,” “gaining a family member” and “death of a close friend.” Based on those factors, the Holmes-Rahe statistical prediction model estimates that Feldman was 80 percent more likely than the general public to develop a “major stress-induced health breakdown.” “It’s still surreal,” Feldman says. “To be diagnosed with the same disease that I watched kill both of my parents … it was just surreal. My biggest fear was becoming my reality.”

MARC RAPP says he believes work-related stress contributed to his diagnosis of non-small cell lung cancer. - PHOTO BY EMILY MCCLURE

Seemingly smaller everyday issues, such as workplace changes, can add up and also have a negative effect on overall health. Marc Rapp considers himself a classic example of this. An otherwise healthy marathon runner, Rapp was startled to receive a metastatic NSCLC diagnosis in 2016 at age 38. Looking back, he recalls many “normal” yet stressful life events that could have played a role in the development of his cancer: job changes, family issues, relocations and organizational restructuring.

One event in particular sticks out in his mind.

“Literally 12 months prior to my diagnosis, I accepted an expanded role that put me in a 24/7 high-stress environment,” Rapp says. “I personally think the level of stress I had over that last year to 18 months was a significant cause or at least an influencer in all of this. It’s just too coincidental.”

Risk factors for lung cancer include family history, smoking (Feldman and Rapp are both nonsmokers), exposure to secondhand smoke, radon, asbestos, arsenic, and diesel exhaust, as well as radiation to the chest. Many experts agree that the list should include the presence of chronic stress, because it makes the body more hospitable to cancer growth. But more evidence needs to be gathered.

“It’s the seed and soil hypothesis,” says Tsonwin Hai, Ph.D., a professor in the department of biological chemistry and pharmacology at The Ohio State University Comprehensive Cancer Center in Columbus. “You have the seed — the cancer cell &mdash; but it’s not just the cancer cell you need to worry about. It’s the surrounding environment. Without fertile soil, nothing’s going to grow.”

Two types of stressors can create this “fertile soil” in the body: psychological and physical. Psychological stressors include situations that can be interpreted as threatening, such as the death of a loved one. Physical stressors places strain on the body, such as injury or chronic illness. The body reacts to both types in a variety of ways, including physical reactions such as muscle tenseness, digestive disorders, weight gain, headache, heavy or rapid breathing, increased heart rate, high blood pressure, a weakened immune system, high blood sugar, heartburn and stomachache. Emotional reactions include insomnia, depression and withdrawal.

And here lies the conundrum: Chronic psychological stressors may make the body more hospitable for lung cancer, and physical stressors that often accompany the disease may make the prognosis worse, Hai says.

To combat the side effects of stress and improve both quality of life and prognosis, stress management should be a priority for all patients with lung cancer, according to Hai, Jafri and other experts, including Kathleen Hall, founder and CEO of The Stress Institute. “The minute you change your perspective, you change the chemistry of your brain,” says Hall, who holds a master’s in divinity from Emory University and a doctorate in spirituality from Columbia Theological Seminary.

Hai agrees. “Stress is unavoidable in life,” she says, “but if you can dampen it, if you can calm your nerves, then you can reduce the detrimental effect.”

After Feldman’s diagnosis, she experienced what she describes an epiphany moment: She realized she needed to get control of her stress to maximize the life she still had. “I could hear my mom’s voice in my head,” Feldman recalls. “Maybe a year after my dad died, she had said: ‘Jill, your dad is dead, but you are alive. Life is for the living, and right now, you are not living.’ It was a wake-up call. I realized that I was wasting my time.”

Throwing herself into advocacy work, connecting with others and learning to compartmentalize helped Feldman take control over her stress, which has drastically improved her life. “When I have appointments with my oncologist, we go through the scans, then I go home, take a hard copy of the scan and look at it myself,” Feldman says. “I allow myself a couple of days to kind of obsess over it, then I put it in a box and I tape it up. I had to figure out how to compartmentalize, because it was consuming me and taking over my life, and the stress was not worth it. Doing this gives me the opportunity to mentally decide what role lung cancer is going to play in my life, because physically, I don’t have that control.”

For Rapp, being intentional and focused with his time has injected more life into his years. “As crazy as it sounds, there’s a side of me that wouldn’t change this,” he says. “Because as scary as this is, I’ve lived more in the last year. I’ve traveled more. I’ve spent more time with my kids. I’ve been more intentional with things than I ever was in the other 37 years. Now, I realize that this is what life is about.”

“Things happen,” Hai says. “We’re all going to go into unknowns in our life, but we need to treasure the moments we have. If you think in that way, you won’t worry about what’s going to happen in the next day, next week or next year. You’ll realize that every minute counts.”

When her fears came true in 2005, Feldman couldn’t help but wonder whether all that stress contributed to her own non-small cell lung cancer (NSCLC) diagnosis.

Examining the Relationship Between Stress and Lung Cancer

SARA BARTOSIEWICZ-HAMILTON, after finding she was more comfortable without reconstructed breasts after mastectomy, founded the group Flat & Fabulous to help support others choosing to live flat. - PHOTO BY MARK BUGNASKI

When Sara Bartosiewicz-Hamilton tested positive for the BRCA2 mutation at the age of 29, nothing could have prepared her for what the next few years would bring.

“I was scared out of my mind,” she says. “But I knew, when I submitted my blood for the test, that if I had the mutation, I was going to have a mastectomy.” According to the National Cancer Institute, a prophylactic mastectomy can reduce the risk of developing breast cancer in a woman with a BRCA gene mutation by 95 percent. For Hamilton, the decision to get the surgery was a no-brainer — as was the choice to go through reconstruction afterward.

“My plastic surgeon never talked to me about not going through reconstruction,” she says. “I kind of just presented myself to him and was agreeable to whatever he thought was best.”

Studies show that this experience is common: The American Society of Plastic Surgeons found that, before going through mastectomy, more than 70 percent of women aren’t fully informed of reconstructive options. Even more startling, many patients report that their doctors urged them to undergo reconstruction, making it feel like their only option. It’s a decision faced by all women who undergo mastectomy, whether the surgery is a prophylactice measure due to breast cancer risk or part of treatment for the disease.

Deanna Attai, M.D., an assistant clinical professor of surgery at the David Geffen School of Medicine at UCLA, recalls a former patient who was choosing to undergo a prophylactic bilateral mastectomy due to a BRCA mutation. “She did not want reconstruction, but the first surgeon she saw wouldn’t do the mastectomy until she saw a psychiatrist,” Attai says. “She was a very educated woman, had clearly researched her options (and) she had known about her BRCA mutation (for years). She had thought about this for a long, long time. So, I think, sometimes, patients feel like they aren’t even allowed the option of not doing reconstruction.”

Following her mastectomy, Bartosiewicz-Hamilton underwent a series of surgeries to reconstruct her breasts. However, in the years that followed, she developed issues in her chest, which eventually culminated in a sensation she describes as an “electric shock” that never went away.

 “I felt like my chest was on fire all day, every day,” she says. “I had gone through so much to have reconstruction … and I just wanted to be done with it.”

At age 34, Bartosiewicz-Hamilton had her breasts removed for the second time, and she finally began to embrace a lifestyle that many women have come to identify with post-mastectomy. She began to live life flat.

When it comes to reconstruction post-mastectomy, many describe the issue as a pendulum, a topic that oscillates between two extremes.

“When I first started in practice, getting reconstruction meant that your only option was a silicone implant … and most people didn’t do it. But as there were better options, women started feeling some pressure,” says Susan Love, M.D., M.B.A., chief visionary officer at Dr. Susan Love Research Foundation, an organization dedicated to mobilizing a future without breast cancer by igniting forward-thinking, collaborative research and a distinctive approach to education.

In 1998, only 15 percent of women opted for reconstruction within four months after mastectomy; in 2014, that number rose to 41 percent among women who underwent mastectomy and remained disease-free over a longer follow-up period.

“I think there was an assumption by mostly male surgeons at that time that women would absolutely want this … Coming from their vantage point, that seemed normal,” Love says. “But the trouble with reconstruction is that it doesn’t look normal and it doesn’t feel normal — maybe to them it does, but not to you.”

Within two months of having her implants removed, Bartosiewicz-Hamilton created an advocacy group called Flat & Fabulous, a space that seeks to “support and empower women to embrace life without reconstruction after mastectomy.”

“When I first founded Flat & Fabulous, women came to me all the time and said: ‘I thought I was the only person,’” she says. “There are women out there who don’t want to go through the pain and danger of reconstructive surgery, and that’s a valid choice.”

A year before Bartosiewicz-Hamilton received her diagnosis, Barbara Kriss went through a similar struggle. After being diagnosed with breast cancer for the second time at age 57, Kriss was advised to have a bilateral mastectomy. In 2007, she started BreastFree.org, which she believes is “the first website dedicated to offering information and support to women considering opting against reconstruction.”

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

Now, with the help of advocacy groups such as these raising awareness and support for women who choose to go flat, the pendulum seems to be swinging back, settling somewhere in that middle space where women feel empowered to make their own decisions.

Bartosiewicz-Hamilton’s lengthy and painful experience with reconstruction is more common than many realize. The risk of complication after reconstruction following a double mastectomy can be as high as 40 percent, according to Attai.

“Reconstruction is a process, not a procedure,” she says. “The more surgery we do, the higher the complication rate.”

BARBARA KRISS'S website, breastfree.org, helps women consider whether going flat after mastectomy is right for them. - PHOTO BY LEISE JONES

Immediate complications from reconstruction may include bleeding, infection, fluid under the wound or flap or nipple necrosis, in which the nipple or flap of tissue used to make the new breast dies. Longer-term complications may include risks involving anesthesia; loss, hardening or changing shape of the implant; leakage of the implant fluid; abdominal hernias; “dog ears,” small folds of skin and fat that can develop at either end of the abdominal scar; or even chronic pain that affects other organs.

There is also the risk of unplanned additional surgeries. A 2015 study involving the impact of reconstruction and reoperation on long-term patient satisfaction reported that, although 83 percent of women responded that they were happy with their contralateral prophylactic mastectomy and would choose it again, immediate reconstruction patients demonstrated “significantly lower satisfaction and were less likely to choose CPM again.” Although 73 percent of the women overall said they would make the same choice again regarding reconstruction, among those who underwent that surgery, 39 percent needed one or more unplanned reoperations. That was “strongly associated with lower satisfaction, lower likelihood of choosing CPM again and lower likelihood of choosing reconstruction again,” the study authors said.

For many women, after the trauma of being diagnosed with cancer, undergoing treatment and facing the reality of a mastectomy, the thought of even more surgery with so many possible risks is just too much to bear.

“When you have cancer, it’s already so overwhelming (that) sometimes the last thing you want to do is make more decisions,” Love says. “But the great thing is, you don’t have to. You can actually take care of the breast cancer, and then, at your leisure, figure out what you want to do.”

Women who are undecided about reconstruction can delay the procedure for six to 12 months or more after mastectomy. This operation is usually accomplished by transferring some of the woman’s own tissue, often from her abdomen, to the breast area, rather than using implants. Possible complications are similar to those associated with immediate reconstruction but occur less often, and the delay in surgery results in a shorter procedure and generally faster healing.

“Initially, I assumed I’d have reconstruction,” says Megan Rutherford, who was diagnosed with stage 2 breast cancer in 2005. She describes her treatment as “long and arduous,” involving radiation and a three-drug chemotherapy regimen that included Adriamycin (doxorubicin), a drug known in the cancer community as “the red devil” because of its harsh side effects. Rutherford originally made an appointment for reconstruction, but ultimately decided to cancel after learning that her radiation excluded her from implants and that a deep inferior epigastric artery perforator (DIEP) flap, in which tissue would be moved from her abdomen to her chest, was “a lot of risk for a minimal effect."

MEGAN RUTHERFORD decided that breast reconstruction after mastectomy was not worth the effort and risk. - PHOTO BY BEN HIDER

“By the time I was done with everything, I was just ready to move on,” she says. “I really wanted to have a (life after cancer), and I didn’t want to put it off even further … I was just ready to be a regular person again.”

After experiencing life both with and without construction, Bartosiewicz-Hamilton learned that, while she initially thought she needed breasts to feel like herself, that was not true.

“As women, we’re self-conscious because we know we’re missing the part that society says makes us a woman,” she says. “But, eventually, I just embraced that this was me … My implants had never felt like a part of me. I had never embraced them; I never liked them; they just didn’t feel right. When I had them removed, I just felt like myself again.”

Although women choose to live life flat for numerous reasons, both surgeons and survivors agree on this: Nothing works for everybody.

“I think it’s really good that women have the option to go flat or to have reconstruction,” says Clara Lee, M.D., a plastic and reconstructive surgeon at Ohio State University Wexner Medical Center. “But the most important thing is that women should have options.”

Lee encourages women to become as knowledgeable as possible about reconstruction, including the pros and the cons. For example, while reconstruction requires more surgery, and therefore more risk, many women find the outcome more aesthetically pleasing. Choosing to go flat means less surgery and faster healing, but women might want or need to wear special bras, magnets or adhesive patches to hold a prosthesis in place, which can be a hassle and uncomfortable.

After educating themselves on both sides of the argument, women should go through a process of clarifying what matters most to them across a number of areas, Lee says.

“How strongly do you feel about having a breast shape when you’re not wearing clothing?” Lee asks. “How strongly do you feel about the risk of complications, more surgery or a longer recovery time? Ideally, we can connect these personal values to the various pros and cons of the procedures, and that will inform … whether or not reconstruction might be right for you.”

Studies have found that there is no significant difference in the rates of local recurrence, metastasis or survival among women who choose to reconstruct versus those who do not. Furthermore, while developing a new breast cancer after mastectomy is very unlikely, if one did occur, reconstruction would not make it harder to detect, according to the American Cancer Society. Finally, Lee says, a systematic review of mastectomy patients she conducted found that “the majority of measurements of quality of life, body image and sexuality did not find significant differences between mastectomy with reconstruction and mastectomy only.”

The biggest indicator in overall satisfaction among patients is simple: the ability to choose for themselves. “I really felt that this had to be my decision,” Kriss says. “As much as I love my husband and my kids, it really had to be what I felt the most comfortable with. A lot of times, women think about how their spouse will feel, or how they’ll feel in front of their spouse or partner or future boyfriend … but in my own experience, my family’s reaction … was that they just wanted me alive. They couldn’t care less. They just wanted me to do whatever was going to make me feel best.”

Attai says that, in her experience, most women ultimately feel good about their choice. “The majority of patients who have made the decision to not do reconstruction have been very happy with their decision. And the majority of patients who do opt for reconstruction also seem to be happy and comfortable with their decision,” she says. “It’s all about taking the time with our patients to really make sure that they’re getting multiple opinions, seeing more than one plastic surgeon and really thinking through their options.”

“There’s power in choosing something rather than feeling like you don’t have a choice,” Bartosiewicz- Hamilton says. “This is not about changing people’s minds. It’s about letting women empower themselves to make the choice that’s right for them.”

Women aren’t always advised that they can opt against breast reconstruction after mastectomy, yet for some, “living flat” brings the best quality of life.

Reconstruction Decisions: "Living Flat" After Breast Cancer

When Martha Raymond, M.A., CPN, executive director of Michael’s Mission and co-chair of the GI Cancers Alliance, conducted an anonymous online survey to explore the unmet needs of patients with gastrointestinal (GI) cancers, she was shocked at their gutwrenchingly honest and disheartening responses.

“Fifty-one percent didn’t even know what a survivorship care plan was,” Raymond says of the 507 participants in the six-week national survey conducted in the fall of 2016. “Another 23 percent said their health care provider never mentioned the need for one.” Based on Raymond’s data, only 8 percent of those who survive GI cancer have a survivorship care plan in place.

Yet in 2005, the Institute of Medicine recommended that each cancer patient, upon completing treatment, be equipped with such a roadmap; now, centers that want accreditation from the Commission on Cancer are required to provide survivorship plans, including treatment summaries and follow-up/surveillance recommendations.

The survey — which included surviors of colon, stomach, rectum and other cancers, most of whom had been diagnosed at stage 3 or 4 &mdash; found that such plans could be helpful to this population, as most said their struggle didn't end once treatment did.

That struggle comes in many different forms: Over 50 percent of respondents reported feeling anxiety, depression, fear and sadness during treatment or survivorship, with 20 to 40 percent reporting hopelessness, denial and anger; in addition, many didn’t understand the steps they needed to take to help safeguard against cancer's return. Because GI cancer consists of 10 different diseases with varying stages and side effects, no two patients will ever have the same follow-up plan. And because there is no single set of guidelines across oncology on how to follow GI survivors, most patients feel uneducated and uncomfortable when it comes to their own survival.

One of those survivors is Scott Murchie, who was diagnosed with stage 3 rectal cancer in April of 2011, when he was 48. After a fecal occult blood test, colonoscopy and upper endoscopy ordered due to a family history of polyps, Murchie’s GI doctor found a lime-sized tumor, immediately launching the resident of northern Virginia into a full-scale treatment plan.

“There were no signs or symptoms,” Murchie says. “I got the luckiest break in the world … If he didn’t order that test, who knows what would have happened?”

After four and a half months, during which he underwent two separate chemotherapy regimens, six weeks of daily radiation and two surgeries, Murchie then had to face an equally hard, yet lesser-known battle: survivorship. “You’re so focused on the treatment every step of the way, just getting through it,” Murchie says. “Then you’re done, and you don’t want to feel ungrateful, but this is in some ways when all the hard work happens. You ask yourself: What’s supposed to happen to me now? What am I supposed to do? How do I deal with the aftereffects both psychologically and physically?”

 Although colorectal cancer is the third leading cause of cancer-related deaths in both men and women in the U.S., that death rate has been dropping steadily over the last few decades due to advanced screening and improved treatment options. However, even though there are more than a million survivors of GI cancers, many health care professionals are battling the unknown when it comes to follow-up care and helping patients to navigate the longterm side effects of treatment.

“This poses many challenges,” says Lei Zheng, M.D., Ph.D., associate professor of oncology at Johns Hopkins Sidney Kimmel Comprehensive Cancer Center. “These patients survive cancer, but they’re left dealing with consequences, even though [treatment] is what led to their cure.”

For example, surgery is the main treatment option for the 80 percent of colorectal cancers that are nonmetastatic, or have not spread from the primary site. While this is potentially curative, more than 40 percent of patients in stage 2 or 3 will have a disease recurrence, making follow-up care critical to catch the recurrence before it spreads, while it may be curable with surgery. This care is also important in helping survivors to deal with chronic functional gastrointestinal issues, such as the management of colostomy bags. Zheng notes that the side effects of radiation, chemotherapy and even CT scans (which employ radiation) are also a cause of concern, because the long-term effects of many treatment options are still unknown. In some cases, it is possible that treatments for an initial GI cancer can contribute to the development of a secondary cancer.

“Those things that you were so grateful to receive to cure you also cause you concern moving forward,” Murchie says. “Just going away and knowing that my appointments were done didn’t feel safe to me. Because even if you’re cured, there’s always the question of: ‘What happens now?’”

Finally, other forms of GI cancer that are less treatable than colorectal cancer pose a different set of problems — for example, while survival rates have been improving decade to decade, pancreatic cancer, detected most commonly at an advanced stage, is still considered largely lacking in significantly effective treatment options, with a one-year survival rate of 20 percent and a five-year survival rate of only 7 percent.

“Not many patients actually survive pancreatic cancer, and very few patients are cured,” Zheng says. “Therefore, the follow- up of these patients forms a different challenge, because of the stress caused by the high recurrence rate of this deadly illness and by the uncertainty of the recurrence time.”

Raymond discovered her passion for helping GI cancer patients and survivors after both her parents were diagnosed with colon cancer during her intermediate school and college years.

“There was no information, obviously no Internet back then,” Raymond says. “It was very isolating, to say the least.”

 Now, finding strength in her motto to “turn your pain into your purpose,” Raymond is partnering with the GI Cancers Alliance to develop the first survivorship care plan that will be tailored to the specific needs of patients with GI cancers. The plan will be customizable for each disease state and address specific needs of patients with GI cancers and their caregivers.

A draft version of the plan will be available in June at the annual meeting of the American Society of Clinical Oncology (ASCO), where members of the GI Cancers Alliance will review the document and offer comments, edits and suggestions. Those interested in using the plan can look for it on the GI Cancers Alliance website at GICancersAlliance.org, where it will be posted when ready.

“It will encompass things like helping patients know when they need to go back for blood work, scans, colonoscopies or endoscopies,” Raymond says.

“But it’ll also cover things such as the emotional and psychosocial aspects of survivorship … because the quality of life concerns are just as important as the physical concerns.”

In the meantime, although it does not broadly apply to patients who have survived any variety of GI cancer, ASCO offers a survivorship care plan template that is specific to those who have had colorectal cancer (https:// tinyurl.com/hhzjk9b).

There are also online guides, such as one from Livestrong (https://tinyurl.com/j6rrllm), that can help people who have had cancer, with the help of their doctors, to create their own survivorship care plans.

In general, Zheng and Raymond advise survivors to take a few simple steps to keep up with their own follow-up care. “Always consult with your health care professionals and really ask questions,” Raymond says. “Get as much education on your disease as you can from trusted sources like the National Cancer Institute, and find out what all your options are. The more information you have up front, the better prepared you are.”

Zheng stresses that followup care looks different for every patient, but suggests that many survivors undergo surveillance CT scans, colonoscopies or endoscopies and participate in clinical follow- ups to analyze their family history. For example, if it is found that the patient has Lynch Syndrome, a genetic condition associated with a higher risk of GI cancer, the patient will likely need a more rigid and comprehensive follow-up plan.

In order to manage the emotional and psychosocial consequences of GI cancer, Raymond suggests that all survivors should focus on regaining control where they can, and seek out support among a variety of sources.

“When someone is diagnosed with cancer in general, that feeling of control is gone,” she says. “But doing something as easy and as simple as putting together a binder of your health care information, blood work, scan results and appointment follow-ups … it gives the patient that feeling of control again. They start to feel like, ‘OK, I got this.’”

 From the patient perspective, Murchie agrees. “I made sure the information shared between all of my providers continued to flow together after treatment,” he says. “Every single provider I went to, I wanted to make sure that the information got hooked up together to try to figure out if anything was particularly meaningful, or if it was just information they could use to put together a picture of treating me long-term.”

Due to the wide array of symptoms, side effects and health concerns that accompany GI cancers, Raymond, Zheng and Murchie all agree: Being your own best advocate is the most effective form of follow-up care.

“A lot of folks will have opinions on what you should do, so be true to yourself about what feels comfortable,” Murchie says. “Gather information so you feel comfortable with the game plan moving forward. If it doesn’t sound right, feel right, or you’re not getting scheduled for follow-ups, you really have to advocate for yourself.”

“Be the co-captain of your own health care,” Raymond echoes. “Seek support, get education and really let your oncologist know that you want to have a say at the table.”

A survey about life after GI cancer has sparked the creation of specialized survivorship care plan.

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