General What’s Next Archives

After cancer treatment ends, you will face a whole new world. Whether you are creating a survivorship plan or an end-of-life plan, nothing will be as it was before diagnosis. You will confront new fears, new opportunities to help others, and new social and physical situations.

Let us help you refocus your hope on where you are today and boldly face this new phase.

More resources for General What’s Next from Patient Empowerment Network.

Fertility Preservation in People with Cancer

This podcast was originally published by Cornell Weill Cancer Cast, on March 22, 2019, here.

Fear of Cancer Recurrence

This podcast was originally by Five to Thrive on January 17, 2019, here.

Most people harbor some amount of fear about getting diagnosed with cancer. For those who are successfully treated for cancer to the point where they no longer have the disease, the fear of recurrence can be tremendous and significantly debilitating to one’s wellness. How can cancer survivors overcome this fear? Can cancer survivors live a fearless life after cancer? Let’s find out… This show is broadcast live on Tuesday’s at 7PM ET on W4CS – The Cancer Support Network (www.w4cs.com) part of Talk 4 Radio (http://www.talk4radio.com/) on the Talk 4 Media Network (http://www.talk4media.com/).

Advocacy and Faith Has Helped Carole Motycka Outlive Her Initial Cancer Prognosis

This podcast was originally published by the We Have Cancer show by Lee Silverstein on March 5, 2019, here.

In our first episode supporting 2019 Colon Cancer Awareness Month, Carole Motycka talks about how advocacy and faith has helped her far outlive her doctor’s initial prognosis.

During this interview we talked about:

  • How a minor hiking accident led to her diagnosis of stage 4 colon cancer and Juvenile Polyposis Syndrome (JPS).
  • Her doctors giving her a 6-11 month prognosis, three years ago.
  • The treatment and support she received from the Cleveland Clinic.
  • Why she needed a liver transplant after doctors finding No Evidence of Disease.
  • How a liver donor was found and her relationship with this fellow church member.
  • The role her faith played in her diagnosis, recovery and her life going forward.

Connect With Carole

Instagram: https://instagram.com/swtcareline

 

Having Kids After Cancer

This podcast was originally published by The Cancer Cast by Jennifer Levine here.

Jennifer Levine, MD, MSW – Speaker Bio
  • Fertility preservation options for men and women with cancer.

    Guest: Jennifer Levine, MD, pediatric hematologist-oncologist at Weill Cornell Medicine and NewYork-Presbyterian Hospital.

    Host: John Leonard, MD, world-renowned hematologist and medical oncologist at Weill Cornell Medicine and NewYork-Presbyterian Hospital.

Palliative Care

This podcast was originally published by NPR’s Joy of Medicine here.

Helping Cancer Survivors Sleep

This blog was originally published by Cancer Today by Cheryl Platzman Weinstock, here.

A clinical trial comparing acupuncture and cognitive behavioral therapy found that they are both helpful for people who are experiencing sleep problems after cancer treatment.

​Photo by Marjot​ / iStock / Getty Images Plus

PEOPLE WHO HAVE BEEN DIAGNOSED with cancer often face sleep problems stemming from the physical effects of cancer treatment as well as psychological or spiritual concerns related to the diagnosis.

A randomized clinical trial published April 9, 2019, in the​ Jo​urnal of the National Cancer Institute​ compared cognitive behavioral therapy for insomnia (CBTi) and acupuncture in patients who had completed treatment for a variety of cancers. Study results showed that participants assigned to the CBTi group experienced a greater reduction in insomnia severity over the course of the study compared with the acupuncture group. However, survivors treated with acupuncture also experienced meaningful improvement in their sleep.

The researchers assigned 80 patients to receive CBTi from therapists trained in the technique over the course of eight weeks. CBTi has previously been shown to be effective in improving sleep in cancer survivors. The therapy works in part by modifying unhelpful beliefs about sleep and providing relaxation training. Patients are also asked to limit their time in bed and use it only for sleep and sexual activity. Another 80 patients were assigned to receive acupuncture over the course of eight weeks. Participants in the study were 62 years old, on average, and had completed active cancer treatment.

The researchers asked the participants to fill out a questionnaire asking about insomnia symptoms both before and after receiving treatment for insomnia. Patients reported significant improvements after receiving either CBTi or acupuncture, both when surveyed immediately after their course of treatment for insomnia and about three months later.

“While overall we found that there is a statistically significant benefit of CBTi over acupuncture, the difference is actually small,” says Jun Mao, chief of integrative medicine at Memorial Sloan Kettering Cancer Center in New York City, who led the study. “I certainly think both treatments produce clinically meaningful outcomes and they persist.”

When they looked more closely at subgroups of patients, Mao and his research team found that CBTi was only significantly better than acupuncture at reducing insomnia for males, white people, people who had graduated from college and people without significant pain. For other groups, the two treatments had a similar effect.

Poor sleep can have a variety of effects, including increased pain, depression and fatigue, says Sandra Mitchell, a research scientist and program director in the Outcomes Research Branch at the National Cancer Institute in Rockville, Maryland, who was not involved in the study.

Although Mitchell says she believes additional studies are needed to look at the long-term effects of acupuncture and CBTi management, she says, “This study yields important and clinically actionable results that patients and providers can utilize in a shared decision-making approach.”

Weidong Lu, lead oncology acupuncturist at Dana-Farber Cancer Institute in Boston, says today many patients with insomnia are first put on medications, which can cause side effects. “I think it’s best starting patients on nonpharmaceuticals for mild- and moderate-level insomnia. Severe, long-term insomnia probably needs a combination approach” that includes drugs and other therapies, such as acupuncture and CBT, says Lu, who was also not involved in the study.

The trial was supported in part by the Patient-Centered Outcomes Research Institute (PCORI), a nongovernmental organization funded through a trust established by the Affordable Care Act to carry out research guided by patients and caregivers.

Jodi MacLeod of Collegeville, Pennsylvania, was one of the patient partners who provided input into the design and execution of the clinical trial. She was diagnosed with stage II breast cancer in 2004.

After treatment, “the expectation was that I would return to being a normal stay-at-home mom, but my insomnia was really disruptive,” she recalls. Her sleep problems led to mental fog and fatigue. Eventually, MacLeod’s husband rearranged his work schedule to help take care of their three young children.

“Back then, in 2005, insomnia and cancer wasn’t well researched and recognized. I actually thought it was my fault,” says MacLeod of her difficulty in sleeping.

MacLeod met Mao in 2006 when she enrolled in a study he was conducting at the University of Pennsylvania in Philadelphia on acupuncture and cancer-related joint pain. When Mao was ready to do his PCORI-funded research on cancer and sleep, he reached out to MacLeod for her help.

Among other contributions, MacLeod and her fellow patient advisers helped decide what questions the study would seek to answer, shape inclusion and exclusion criteria for the trial and recruit a diverse group of patients to participate, as described in a 2017 paper​ that MacLeod co-authored.

“It is satisfying and empowering to know that we’re leaving the cancer waiting room better than we found it,” says MacLeod. “Cancer patients now don’t have to go through what I did, because now there are effective insomnia treatments available.” 

Cheryl Platzman Weinstock is a journalist who reports on health and science research and its impact on society.​

A Cancerversary Reflection

This blog was originally published by I Had Cancer.com on July 23, 2019, by Catherine, here.

This month marks the five year anniversary of my first cancer diagnosis, and three years since my stage IV diagnosis. Statistics say that I’m at the upper limit of my predicted survival (2-3 years), so it looks like I’m bucking the trend. I have a strange mixture of emotions. On one hand I feel like celebrating, but on the other hand I feel quite drained – emotionally and physically. It’s hard work living with cancer.

I’m tired of traveling to Manchester every three weeks for treatment. I’m sick of feeling guilty when I eat a dessert or drink one too many glasses of wine. I’ve had enough of slathering on cream to try to keep the skin on my hands and feet from cracking. I’m fed up with scans, blood tests, cannulas, and putting up with the indignity of being poked and prodded by strangers. What I wouldn’t give for just a few months of freedom from the shackles and restraints that my cancer diagnosis entails.

Recent years have seen a huge rise in cancer life expectancy. Medical advances in immunotherapy, genetic profiling, artificial intelligence and advanced imaging are just a few of the areas that are significantly impacting that survival rate. It is now estimated that 2.5 million people in the UK alone are living with cancer and over 15 million in the US.

Despite this growing population, there is so little awareness and understanding of advanced-stage cancer and its emotional and physical burden. I’ve lost count of the number of times I’ve been asked when my treatment will be finished. When I explain that I’ll be on treatment forever, people look shocked and embarrassed. There is a general perception that cancer is something you have, and if you’ve caught it early and fight hard enough, you beat it. Versions of this story are churned out with every awareness campaign, accompanied by coloured ribbons and sponsored runs.

I’m not saying that we should stop these campaigns – it is important to highlight the symptoms of cancer and encourage people to be vigilant – but society needs to become aware of the daily challenges people living with cancer face in our attempt to live a ‘normal’ life.

Most of us will be on treatment forever – treatment that often comes with debilitating side effects. Many of us are unable to work, or are struggling through pain and fatigue to hold down a job so that we can afford to feed and clothe our children. Normal life plays second fiddle to the endless cycle of medical appointments. And every single one of us has a constant mental battle to overcome the fear of an uncertain future.

I’m exceptionally grateful that, five years on from my original diagnosis, I’m still here and relatively healthy. But it is exhausting having to keep conjuring up the inner strength to overcome the physical and emotional daily challenges of a cancer diagnosis for such a long period of time.

Sorry for the moan, it’s quite out of character. I’m usually a proud person, preferring to keep my struggles and insecurities private, but I feel quite strongly that there is simply not enough understanding or practical support for the millions of people in this country and around the world in my position.

Globally we are making huge advances in our ability to kill off errant cancer cells, but we have long neglected the wider emotional, physical and financial needs of the people whose lives we’re extending.

I long for a time when society has a better appreciation of the challenges cancer survivors face and can start creating an environment that better supports the needs of our growing population.

Life After Cancer Resources

This resource was originally published by National Coalition For Cancer Survivorship here.

Life After Cancer

Husband WifeFifty percent of men and one-third of women in the United States will develop cancer in their lifetimes. There are currently more than 12 million U.S. cancer survivors.

Despite the widespread nature of the disease, primary care physicians and other health care providers are often unfamiliar with survivorship issues and do not generally receive formal guidance from oncologists on how to monitor cancer survivors or manage their care.

Below are articles and resources to assist cancer survivors and their families and caregivers with issues that arise post-treatment.

Cancer Advocacy Network

This resource was originally published by National Coalition For Cancer Survivorship here.

How to Serve on a Scientific Review Panel as a Patient Advocate

This resource was originally published by Cancer Today Mag.com by Bob Riter, Monica Vakiner and Carole Baas, here.

Cancer patient advocates who review research proposals can provide valuable perspective.

​Image​ by OnBlast​ / iStock / Getty Images Plus

WHILE IT’S MOST COMMON ​to hear about cancer patients getting involved in research by enrolling in clinical trials, patients and others affected by cancer can also help shape the direction of research by serving on scientific review panels.

These panels bring together experts to analyze research proposals to help determine which ideas will receive funding. Several organizations and government programs, including the Congressionally Directed Medical Research Programs, the Patient-Centered Outcomes Research Institute and Susan G. Komen, provide opportunities for grant review to patient advocates, including cancer survivors, patients and caregivers.

Opportunities to Apply Yourself

Advocates interested in becoming involved in a research review panel can explore options with government agencies and nonprofit organizations, including patient advocacy organizations that provide research funding for various projects.​

​While scientists and clinicians on panels analyze the science, patient advocates judge the merit of the study from a more personal vantage point, guided by a basic question: “Will the study make a difference in the lives of patients?” Everyone on the panel has an equal voice and vote to rank the research applications.​ ​

Initial Review

Advocates who are selected to be a part of a scientific review panel usually participate in an introductory phone call or webinar hosted by the panel organizers, who provide an overview of the process and answer any questions. Some review panels pair novice patient advocates with experienced advocate mentors. In these cases, novices can connect with and get feedback from their mentors.

Scientific review panels typically have a mix of approximately 20 scientists and two to four advocates. While each panel has its own process for review depending on the funding organization, panelists typically review approximately five to 10 research proposals, providing comments and scores. These research proposals generally include sections that describe the research plan, the researchers’ qualifications, a timeline, a budget and letters of support from the organizations where the researchers work.

Advocates are not expected to understand each scientific detail in these proposals. Rather, they focus on the potential impact of the research on the patient community. For example, advocates are well suited to offer feedback on the lay abstract, the one-page overview of the proposal written in nontechnical language. These abstracts provide a general idea of the research and demonstrate the researchers’ ability to communicate with a broader audience.

In addition, patient advocates can ask several important questions about the research: Does the grant application have a clear hypothesis? Does the researcher make a compelling case that the research is important? Do the researchers and institutions where they work have track records that demonstrate the research will be completed? Do the letters of support indicating institutional backing seem enthusiastic?

Optimize Your Time

Follow these practical tips to make an impact on scientific review panels.​

​Further CollaborationOnce the initial scoring is tabulated, panelists meet again—either virtually or in person. For example, the Congressionally Directed Medical Research Programs hold meetings for one to two days in the Washington, D.C., area. During the meeting, each panel reviews the top-scoring 20 to 30 applications in its assigned subject area.

The committee chair and a scientific review officer keep the panel focused and on schedule. The reviewers go over their rationales for scoring decisions for the proposals they initially reviewed. After discussion, panelists score each proposal.

The proposals are then rank-ordered based on the scoring and often referred to a different committee (commonly known as a program committee or integration panel) for final funding decisions. This committee takes a broad view and makes sure that awards are consistent with criteria outlined in the call for grant proposals. A few months later, the grant awards are typically announced on the funding organization’s website.

Serving on a scientific review panel allows advocates to influence the direction of research and to learn from—and become friends with—esteemed researchers and clinicians. Including advocates as collaborators with scientists and clinicians provides a wonderful synergy, reminding all parties involved that, in addition to being a disease that affects cells, cancer is also a disease that affects people.​ 

Bob Riter, a stage II breast cancer survivor, is a patient advocate with Cornell University Physical Sciences Oncology Center in Ithaca, New York. Monica Vakiner, a stage II invasive ductal carcinoma and lobular breast cancer survivor, serves as the director of client services at the Cancer Resource Center of the Finger Lakes in Ithaca. Carole Baas, a ductal carcinoma in situ survivor who lives in Southlake, Texas, is the national advocate for the Physical Sciences-Oncology Network of the National Cancer Institute.​

Survivorship

This resource was originally published by Cancer.net here.

Today, there are more than 15.5 million Americans alive with a history of cancer. Cancer.Net’s survivorship section provides helpful information for cancer survivors and their friends and family.

Healthy Living

Tips for leading a healthy lifestyle during and after treatment

 

Post-Cancer Side Effects: What to Expect

This video was originally published by the American Cancer Society on June 18, 2014, here.

After treatment ends, many cancer survivors must still learn to deal with different side effects. Dr. Richard Wender of the American Cancer Society explains what survivors can expect and how they can manage.

Cancer Survivorship Plans

This video was originally published by the American Cancer Society on June 18, 2014, here.

After your doctor declares you cancer-free, you still may have a long road ahead. Dr. Richard Wender of the American Cancer Society explains how a cancer survivor care plan can help guide you after treatment ends.