Blue Note Therapeutics hosted a panel discussion in May 2021 with clinical experts and patient advisors from Memorial Sloan Kettering Cancer Center (MSKCC) to discuss cancer-related distress and how to navigate it in both a patient and caregiver role.
Jimmie Holland, MD, a psychiatrist, pioneered the field of psycho-oncology to what it is today. She was very interested in the emotional aspects of cancer and wanted to address the humanistic elements of dealing with cancer. Each of the panelists continues to work towards what Dr. Holland initially set out to do—help patients undergoing treatment at MSKCC face the stressors associated with the various stages of diagnosis, treatment, and survivorship. Both patient advisors have been through each role as a patient, caregiver, and survivor and highlighted how psycho-oncology has helped them cope with everything.
Cancer-related distress, Haley Pessin, PhD said, “stems from having an illness and centers around that. But it can take a lot of different forms: It can be sadness and depression, it could be anxiety, worry, it could be anger, it could be feeling helpless and hopeless, feeling overwhelmed, not being able to navigate things.” He explained that while the statistics may vary depending on the study, about 35-80% of cancer patients experience distress, compared to 8-10% that may experience it in the general population. The clinicians use a distress thermometer that lists about 40 items to address concerns and problems appropriately and to understand the origin of stressors in the patients’ lives.
When the panel was asked whether treatment for cancer-related distress could influence other areas of the disease like physical pain or the need for opioids, William S. Breitbart, MD said, “There are several areas in which psychosocial interventions can be used to ameliorate these nonsomatic components of cancer pain.” Another panelist, Wendy Lichententhal, PhD, spoke about how mental health providers can help alleviate stress and potentially improve medical outcomes. Psychological support can ease concerns and stressors and can help patients adhere to their medication and treatment regimens.
Even while receiving psycho-oncology treatment, it is very common for patients to yo-yo in their feelings of stress. For example, at the onset of diagnosis, patients might experience high stress levels, which might be lower post-treatment. This is very common not only for patients but also for caregivers. When encountering such a rollercoaster of emotions, patients might feel like a burden when wanting to ask for additional help from their medical team, but Allison J. Applebaum, PhD, says it is not a burden at all. Instead, it is as simple as saying, “I am having difficulty coping. Who, here or in the community, can provide support to me?” Not only are patients and caregivers encouraged to advocate for themselves, but also healthcare professionals should be doing the same.
Highlighting the importance of mental health, Anne Marie, a patient advisor, said that it is of prime importance when coping with any serious health condition. Her recommendation is that when asked on a distress screener, patients should let the medical team know when they need help managing and handling issues beyond just their medical symptoms. There are many services and resources available to help patients and caregivers who may be struggling with their mental health. Learn more about them here: https://coloncancerfoundation.org/mental-health-cancer/.
Nutrition and Colorectal Cancer Prevention
Insurance Coverage for Colorectal Cancer Screening
Fecal Immunochemical Test (FIT) Outreach Shown to Increase CRC Screening Compliance
The growth of the telehealth market has highlighted a need for alternative remote outreach methods to reach individuals for preventive/wellness screens. Unlike some other screening tools, such as colonoscopy, fecal immunochemical test (FIT) can be conducted by the person at home and has become an attractive option during the COVID-19 pandemic. Previous studies regarding outreach and FIT testing focused on short-term metrics, such as a one-time intervention and limited follow-up. These studies also did not account for FIT compliance before the studies, which can be a strong predictor of one-time FIT compliance.
In a recent multiyear, randomized study published in Clinical Gastroenterology and Hepatology, researchers looked at FIT outreach outcomes. The study included 10,771 patients from eight San Francisco Health Network clinics, aged 50-75 years, who were not up-to-date (UTD) with colorectal cancer (CRC) screening. Patients were first stratified by the clinic, gender, race/ethnicity, and FIT history and then randomly assigned to one group. The two groups were: outreach intervention and usual care. The outreach group received a mailed postcard and a phone call, followed by a FIT kit sent to the patient’s home. Patients who did not return the FIT kit after two weeks received two reminder calls. Usual care was left for the participating clinics to decide, including reminder calls, educational material, and coaching.
Follow-ups for participants went up to 2.5 years unless the patient:
At the end of the study, the cumulative proportion of patients with FIT completion in the outreach group was 73.2%, versus 55.1% in the usual care group. Patients who had previously done a FIT were more likely to complete FIT through mailed outreach. Outreach also increased FIT completion in patients who had not previously done one. However, the second cycle of mailed outreach did not increase completion in those who had not done so in the first cycle. Patients assigned to outreach were also more likely to be consistently adherent (2 of 2 FIT completed) versus intermittently (1 of 2) or non-adherent (0 of 2). The outreach group also had significantly more abnormal FIT results than the usual care group. As a result, more colonoscopies were also conducted in the outreach groups.
Overall, the study’s findings show that the outreach group had more benefits and compliance for FIT than the usual care group. Although there was no significant difference in CRC cases between the two groups, the outreach group did have more abnormal FIT results, leading to earlier detection and decreasing CRC risk over time.
Limitations to the study included the use of safety-net populations, who are more likely to have changes in contact information, which could impact overall outreach. Stool-based option successes also require adherence to both FIT and colonoscopy follow-ups for abnormal results. However, the authors did not evaluate compliance with colonoscopy follow-ups in this study. While there was an overall increase in CRC screenings from FIT outreach, more research can be done on how other metrics impact the results. In the meantime, outreach and FIT are beneficial in the current telehealth era that we are in.
MSKCC Experts Discuss Cancer-Related Distress and How to Get Help
Blue Note Therapeutics hosted a panel discussion in May 2021 with clinical experts and patient advisors from Memorial Sloan Kettering Cancer Center (MSKCC) to discuss cancer-related distress and how to navigate it in both a patient and caregiver role.
Jimmie Holland, MD, a psychiatrist, pioneered the field of psycho-oncology to what it is today. She was very interested in the emotional aspects of cancer and wanted to address the humanistic elements of dealing with cancer. Each of the panelists continues to work towards what Dr. Holland initially set out to do—help patients undergoing treatment at MSKCC face the stressors associated with the various stages of diagnosis, treatment, and survivorship. Both patient advisors have been through each role as a patient, caregiver, and survivor and highlighted how psycho-oncology has helped them cope with everything.
Cancer-related distress, Haley Pessin, PhD said, “stems from having an illness and centers around that. But it can take a lot of different forms: It can be sadness and depression, it could be anxiety, worry, it could be anger, it could be feeling helpless and hopeless, feeling overwhelmed, not being able to navigate things.” He explained that while the statistics may vary depending on the study, about 35-80% of cancer patients experience distress, compared to 8-10% that may experience it in the general population. The clinicians use a distress thermometer that lists about 40 items to address concerns and problems appropriately and to understand the origin of stressors in the patients’ lives.
When the panel was asked whether treatment for cancer-related distress could influence other areas of the disease like physical pain or the need for opioids, William S. Breitbart, MD said, “There are several areas in which psychosocial interventions can be used to ameliorate these nonsomatic components of cancer pain.” Another panelist, Wendy Lichententhal, PhD, spoke about how mental health providers can help alleviate stress and potentially improve medical outcomes. Psychological support can ease concerns and stressors and can help patients adhere to their medication and treatment regimens.
Even while receiving psycho-oncology treatment, it is very common for patients to yo-yo in their feelings of stress. For example, at the onset of diagnosis, patients might experience high stress levels, which might be lower post-treatment. This is very common not only for patients but also for caregivers. When encountering such a rollercoaster of emotions, patients might feel like a burden when wanting to ask for additional help from their medical team, but Allison J. Applebaum, PhD, says it is not a burden at all. Instead, it is as simple as saying, “I am having difficulty coping. Who, here or in the community, can provide support to me?” Not only are patients and caregivers encouraged to advocate for themselves, but also healthcare professionals should be doing the same.
Highlighting the importance of mental health, Anne Marie, a patient advisor, said that it is of prime importance when coping with any serious health condition. Her recommendation is that when asked on a distress screener, patients should let the medical team know when they need help managing and handling issues beyond just their medical symptoms. There are many services and resources available to help patients and caregivers who may be struggling with their mental health. Learn more about them here: https://coloncancerfoundation.org/mental-health-cancer/.
Research on Early-Age Onset Colorectal Cancer Presented at ASCO
At this year’s annual meeting of the American Society of Clinical Oncology, over 400 abstracts related to colorectal cancer (CRC) were presented. Here’s a glimpse into some of the early-age onset CRC research and how biological factors such as hyperlipidemia and the presence of circulating tumor cells may influence prognosis.
Early-Age Onset CRC:
Biological Factors:
ASCO: Technology, Socioeconomic Factors Can Influence Colorectal Cancer Outcomes
The American Society of Clinical Oncology held their annual meeting from June 4-8, 2021, where over 400 abstracts related to colorectal cancer (CRC) were presented. We at the Colon Cancer Foundation highlight some notable ones related to technological advancements, socioeconomic factors, and clinical care below.
Technological Advancements:
Socioeconomic Factors:
Clinical Care:
FOBT Screening Compliance Reduced Colorectal Cancer Mortality, Especially in Men
Several screening options are available for colorectal cancer (CRC), such as stool-based tests like the guaiac fecal occult blood test (gFOBT), fecal immunochemical test (FIT), and the multi-targeted stool DNA test (FIT-DNA). Visual screenings are also available in the form of colonoscopy. The FOBT is done every one to two years. While annual testing is common in the U.S., European countries and Canada opt for biennial testing. In the past, using FOBT screenings has shown reductions in CRC mortality, but the trials did not have sufficient evidence to also study all-cause mortality. However, these studies did not account for compliance adjustments and the effects of screening on varied ages and sex.
A recent study published in Clinical Gastroenterology and Hepatology evaluated the long-term reductions in all-cause and CRC mortality amongst those who comply with screenings offered when adjusted for compliance, age, and sex. Biennial screening groups in the 50-80 years age range were compared to control groups in the same age range. Funen Fecal Occult Blood Trial and the Minnesota Colon Cancer Control Study with sample sizes of 61,993 and 46,551 individuals, respectively, were used to assess the long-term effects of FOBT screenings on CRC and all-cause mortality.
The 30-year follow-up period saw 33,478 and 33,479 total deaths, with 1,023 and 1,146 CRC-related deaths in the screening and control groups, respectively. The statistical findings showed a 16% reduction in CRC mortality and a 2% reduction in all-cause mortality among those who complied with FOBT screenings. In addition, men who complied with screenings had a higher reduction in CRC mortality compared to women. Significant reductions in CRC mortality were observed among compliant men, especially those in the 60-69 years age group, and among women 70 years and older.
The findings from this study support that CRC screening programs should emphasize FOBT compliance to decrease CRC mortality and all-cause mortality in the long term. Individuals who comply may also engage in overall healthier behavior, such as being non-smokers and healthy eaters. These individuals are also more likely to make healthy lifestyle choices, contributing to an overall lower risk of death. Those who comply with screenings are more likely to utilize the healthcare system, leading to better health outcomes. Though the study could not directly answer why compliant groups had lower all-cause mortality than the control group, it is worth reinforcing 100% compliance among screening individuals.
Overall, this study demonstrates a need for continued research to study the effects of screening on reducing mortality in the long term. The study did have some limitations, such as not being able to follow up on the patients’ screening behaviors once the trial ended. Compliant individuals may have stopped screenings after the trial ended, while non-compliant individuals may have initiated screening, impacting the mortality rates. The long-term effects of screening on mortality should remain an area of active research as there are newer, more accurate screenings now available, which may continue improving CRC mortality outcomes.
Could the Western Diet Be a Risk Factor for EAO-CRC?
Early-age onset colorectal cancer (EAO-CRC) rates have been steadily increasing in the U.S.. EAO-CRC, defined as colorectal cancer (CRC) found in patients under 50, has more than doubled since the 1990s. The recently concluded Early-Age Onset Colorectal Cancer Summit hosted by the Colon Cancer Foundation gave global experts a platform to discuss the underlying factors behind this concerning pattern. Diet, lifestyle, early-life exposures, and the microbiome made up a majority of the conversation during one of the summit’s sessions, as these are all factors that play a role in EAO-CRC. Diet in particular is a factor that must be explored further. According to a prospective cohort study published in the Journal of the National Cancer Institute (JNCI) in May 2021, hyperinsulinemia, chronic inflammation, and gut dysbiosis caused by a poor diet can lead to CRC.
The JNCI study investigated the potential link between poor diet and rising incidence of EAO-CRC. The study’s researchers analyzed the documented behaviors of participants in the Nurses’ Health Study II (NHSII). NHSII is the second generation of the Nurses’ Health Study, established in 1976 to investigate risk factors for chronic diseases in women. NHSII contains a cohort of young women with well-documented endoscopic histories and assessments of diet and lifestyle factors, which “provides a unique opportunity” to address the knowledge gaps in the potential link between diet and EAO-CRC.
The study looked at the history of 29,474 women aged 25-42 from 1991 to 2011. Every two years, participants were given questionnaires on demographics, life factors, and medical diagnoses. This allowed the study’s researchers to distinguish between participants with colorectal adenomas and those without, an important distinction as colorectal adenomas are postulated to be precursors to EAO-CRC. The adenomas were then categorized by their malignant potential based on size and histology.
To procure information about diet, the researchers looked at the food frequency questionnaires (FFQs) participants filled out every four years. The FFQs revealed two dominant dietary patterns: 1) the Western diet, characterized by refined grains, processed meats, and high-sugar foods, and 2) the prudent diet, characterized by vegetables, fruits, whole grains, and seafoods. Three indices were used to determine overall food quality: Dietary Approaches to Stop Hypertension (DASH), Alternative Mediterranean Diet (AMED), and Alternative Health Eating Index-2010 (AHEI-2010). For all three indices, higher scores indicated higher diet quality.
Results from statistical analyses showed that participants in the highest quintile of Western dietary patterns had an increased risk of early-onset adenoma compared to those in the lowest quintile. Additionally, adherence to the Western diet was positively associated with early onset high-risk adenomas in particular. Conversely, there was an inverse association between adherence to DASH, AMED, and AHEI-2010 and risk of early-onset adenoma.
These findings indicate that poor diet quality contributes to the increase in EAO-CRC found in the U.S.. However, it is important to note that participants following the Western diet were also more likely to engage in unhealthy behaviors, e.g. smoking and being sedentary, compared to participants following the prudent diet, DASH, AMED, and AHEI-2010. These confounding variables display the necessity for further research into the link between diet and EAO-CRC.
Fundraiser Spotlight: Billy
Billy is an artist that has created comics to get through his journey with colon cancer all the while raising funds for the Colon Cancer Foundation;
“Over the past six months, I’ve been dealing with Stage 2 Colon cancer. I decided at the time I wasn’t going to take this lying down. So I got together with some friends and started talking about my situation; and we decided that the best way to go about it was to raise money for a good cause. For research, and to put something together that we can do yearly.
I’ve had 7 friends get colonoscopies from my experience and 2 came back with cancer. Seeing that was scary enough beyond my own diagnosis at 38, with that being said. This is the hill (beyond animal rescue) that life has given me. And I hope I can do a tremendous amount of good in that time.”
A huge thank you to Billy for sharing his inspiring story. If you are interested in starting your own fundraiser, learn more about it here: https://coloncancerfoundation.org/events/organize-your-own-fundraising-event/?fbclid=IwAR23xzwdF-K8j0t-WETp-gzIjj0j-LpXg49ywZ8g-YQjSM8vK722Mis4h-k
Fundraiser Spotlight: Kelli
After losing her husband to Early-Age Onset Colon Cancer, Kelli decided to raise funds for the Colon Cancer Foundation and advocate for Colon Cancer awareness in memory of her husband until Colorectal Cancer is just as prominent in our minds as Breast Cancer:
It is my pleasure to push for donations for colon cancer. In January of 2020, my husband(Frank) saw his dr for what we thought was a stomach virus. The doctor was not seeing any real big issue wrote it off as a long-lasting virus but put in an order for ultrasound in February if he wasn’t better by then. A few weeks later (and still having on and off stomach issues) he saw his headache doctor who ran some blood work. A few days later they called us concerned about his liver enzymes. They advised us to pick up a copy of the blood work and see his doctor immediately. His primary doctor was finally as concerned as we were and rushed the ultrasound. Two days later he had it done. I knew something was wrong when they asked him to stay while they called the doctor to gain permission for a CT saying the ultrasound showed “bubbles of gas”. A few hours later with no word we went home. At 10:30 that night his primary doctor called me. He explained that the ultrasound showed several masses and he wanted us to report to the ER for a CT, he hadn’t told my husband yet he called to warn me what was coming before he did. He then called and explained to Frank what the ultrasound showed. The next morning we got the kids to school and headed in for the CT. Dr. Ben (who was amazing) at Chesapeake General got the unpleasant job of explaining he had cancer and it was not a small version but instead a very big one (stage four) and at the age of 38 with a wife and two kids. This being the spiral of colonoscopy, being moved to the top priority at the oncologist, a tumor sample surgery, and three different types of chemotherapy. The oncologist gave us lots of hope that he would beat it or at least reduce it to an operable size, he easily had about 5 years. Frank started chemo in late March that year and every two weeks he was in the chair for about 5 hours while I was stuck outside due to covid being announced and new policies. In December after no real change other than spreading to now 4 locations, he opted to take a month off. I fully supported him in that as his Birthday and Christmas were coming and he really wanted to go visit family. During December he had fewer symptoms since chemo had left him with neuropathy in his fingers and toes along with hair loss and severe reactions to cold. When we returned after New Years I immediately called the office to request a CT and restart of treatment. The CT revealed more spreading and growing tumors Frank restarted chemo immediately. A new addition to treatment was draining the fluid buildup from his abdomen every week. In the last six months, every genetic test available was run to try and find the cause of his cancer. They all came back with no issues in his genes. After four weeks of treatment and growing reactions, his oncologist called me to discuss his status. The ammonia was building up in his body as his liver was now shutting down and full of tumors. He let me know that Frank had 6-8 weeks left. We chose to call family and advise them to visit but not to tell Frank yet. The doctor ordered a permanent drain to go in. March 8th he had the procedure. On Tuesday he woke up with very diminished brain functioning. We had the hospice team come immediately- the same team that Frank refused for months. Their initial assessment was he had a week maybe two. His brain function cleared up mostly so it restored some hope of a longer time. Friday he was deteriorating again. I had taken care of him in every way in the last month but now he didn’t even have the strength to stand in the shower, or at all really. Sunday, March 14th he woke up with a bit more energy and was insistent on making homemade orange juice downstairs. So I helped him down, cut the oranges and he juiced one and a half before he was exhausted. He rested for a bit while drinking his juice then I helped him back up the stairs. The nurse came to check in and explained to me he was very rapidly slipping away so expect it in the next day or two. We spent that day watching Harry Potter as a family. He dozed on and off but was very clear when awake. Then suddenly he wasn’t. At 10:01 pm he took his last breath with the kids and I surrounded him in love. It was the worst day of our lives, telling him it was ok to let go and how much we loved him watching him slip away in mere hours after he was up and talking.
He lived a year fighting his best fight and we spent it loving each other more than ever.
He never had any indications before that thought to be stomach flu. Early testing has to become a routine thing and I plan to advocate and raise funds in his memory until it is just as prominent in our minds as breast cancer. No one should have to go through what we did as a family especially at such a young age.
A huge thank you to Kelli for sharing her inspiring story. If you are interested in starting your own fundraiser, learn more about it here: https://coloncancerfoundation.org/events/organize-your-own-fundraising-event/?fbclid=IwAR23xzwdF-K8j0t-WETp-gzIjj0j-LpXg49ywZ8g-YQjSM8vK722Mis4h-k