Guest post by Stacey Tinianov and Dr. Nimmi Kapoor
Survivorship Symposium: A Review
On Friday, January 15th, a diverse group of over 800 attendees met in San Francisco for the inaugural two-day Survivorship Symposium, jointly sponsored by the American Society of Clinical Oncology (ASCO), the American Academy of Family Physicians (AAFP) and the American College of Physicians (ACP). The room was filled with oncologists, primary care providers, cardiologists, radiologists, surgeons, researchers, advocates, patients and survivors all intent on sharing and learning the latest and greatest in how to support individuals from the point of diagnosis and well beyond the typical active treatment care for cancer.
While the presentations were as varied as the audience members, several themes were prominent:
– One Size Fits No One
– Talk Therapy vs. Test Therapy
– Survivorship as its Own Complex Chronic Condition
One Size Fits… No One
The concept of “Cancer Survivorship” is relatively new, since decades ago the vast majority of patients diagnosed with cancer would die from their disease. That is no longer the case. We have over 14 million survivors in the United States alone and, according to the American Cancer Society; 2.8M of those are breast cancer survivors*. But all survivors do not have the same needs or concerns and, in a world of precision medicine, Mary McCabe of Memorial Sloan Kettering Cancer Center reminded the audience that “One size actually fits no one.”
Various risks of late stage treatment effects, psychosocial responses and financial toxicities were shared in General Session 1: Risk Based Health Care of Cancer Survivors in the 21st Century to illustrate the individual diversity in survivorship experiences and needs.
The width and breadth of some of these needs indicate survivorship plans should be much more expansive than simply the personalized documentation of a treatment summary and recurrence surveillance plan. According to McCabe and others, a survivorship care plan should also include assessment of increased risks based on treatments, late effects screening guidance, information on lifestyle impacts cancer-related risks, roles and responsibilities of the provider team as well as resources to address both the variety of medical and psychosocial needs of a cancer survivor.
Patient and Research Advocate Diane Heditsian kicked off Session Two: Multidisciplinary Approach to Survivorship Starts at Diagnosis sharing her experiences of diagnosis, treatment after two different primaries at two different institutions. Regarding her post-treatment reality in both cases, “I was not given any type of survivorship plan.”
Leveraging her experiences and understood needs, Ms. Heditsian also closed the general session with her specific recommendations for “Filling the Gaps” in survivorship care which included a 12-week comprehensive re-entry program for individuals following active treatment.
Talk Therapy vs Test Therapy
Friday also included a full session titled, “Surveillance for Recurrence and Second Cancers” chaired by Dr. Chunkit Fung and Dr. Kevin Oeffiger. Dr. Patricia Ganz from UCLA tackled a complicated topic of “Beyond the Scan: What to Look for and How”. She highlighted the fact that we have limited guidelines on how and when to screen for recurrence and we have even less reliability of how accurate tests are to monitor for disease recurrence.
Guidance to Physicians on Cancer Surveillance: Do’s and Don’t by Dr. Patricia Ganz:
Dr. Ganz continued to emphasize the potential harms of over-testing and then introduced the concept of “Talk Therapy” instead of “Test Therapy” by educating and engaging survivors in their long-term follow-up care.
Dr. Stephanie Lee from Fred Hutchinson Cancer Research Center reviewed current guidelines on surveillance for both average and high-risk patients. She emphasized the importance that secondary cancers were important to screen for, especially in childhood cancer survivors. For breast cancer survivors, the risk of endometrial cancer with Tamoxifen use as well as the risk of sarcoma with radiation use was reviewed.
Dr. Deborah Korenstein from Memorial Sloan Kettering Cancer Center continued the conversation to remind us of the vulnerability of cancer survivors in the eyes of a case example. When we order a test there are many potential harms such as radiation exposure, anxiety, and economic burden.
Survivorship as its Own Complex Chronic Condition
On Day Two, Dr. Belinda Vail from the University of Kansas Medical Center co-chaired a two part session entitled Multidisciplinary Approaches to the Cancer Survivor with Complex Medical Needs. Based on the nuances and needs of cancer survivors, Dr. Vail suggested, “Survivorship should be considered its own complex chronic disease and impacts all aspects of health.”
The concept of survivorship as a chronic condition helped bring to light a reminder to the primary care community that, just as some individuals must deal with chronic aspects of heart disease, diabetes and asthma, cancer survivors also have a number of issues they continually struggle with: recurrence, secondary cancers, fear of recurrence, fatigue, insomnia, weight gain, chemobrain and cardiotoxicity. And each of those issues impacts the general health and well-being of the individual.
While the idea of managing unique needs of cancer survival resonated with the audience, managing it as a chronic disease rubbed others the wrong way. While not physically in attendance at the Symposium, Dr. Don Dizon provided his opinion on survivorship as a chronic condition via Twitter:
— Don S Dizon (@drdonsdizon) January 16, 2016
It was suggested that “Chemobrain” may be more appropriately referred to as “cancer brain” given the cognitive deficits from chemotherapy that move hand in hand with fatigue, stress, insomnia, scanxiety cardiovascular disease, etc. as well as the considerable effects of endocrine therapy. Cognitive rehabilitation including ‘brain training’ was suggested as an additive element of the survivorship plan.
Also mentioned were lifestyle changes that reduce risk of recurrence & improve QoL in survivors including exercise, weight management, acupuncture, meditation and mindfulness.
Across two days of presentations and conversations, perhaps the most poignant statement came from two time cancer survivor Ms. Heditsian. Along with her plan for re-entry, she included a reminder to keep quality of life at the forefront of all treatment and post-treatment decisions, “We owe it to the survivors that the saved life is a life worth living.”
— LBBC (@LivingBeyondBC) January 15, 2016
Our Hope for Future Symposiums
While much was covered at this conference, many key aspects of survivorship were not included. Future Survivorship Symposiums will have an opportunity to address issues and topics of palliative care, living with metastatic disease, sexual side effects, lymphedema and care-giver/family support.
Topics for #BCSM Discussion
T1: Did you receive a Survivorship Plan? What did it include?
T2: What else in missing from the Survivorship conversation?
T3: What resources do you reference to support your own survivorship?
*Statistics from the 1/15/16 update on ACS website
Stacey Tinianov is a breast cancer survivor and community advocate passionate about creating environments that support individuals and their families as they deal with the emotional intricacies of cancer diagnosis, treatment, recovery and survivorship. As a Bay Area Engagement and Advocacy consultant, she designs and implements scalable collaborative models for patient and community engagement. She sits on the Advisory Board for Camp Kesem SCU and lives in Santa Clara, CA with her husband and two children.
Twitter: @coffeemommy – https://twitter.com/coffeemommy
Dr. Nimmi S. Kapoor is a fellowship-trained surgeon specializing in breast and thyroid cancer, and is the Medical Director of Breastlink at the Encino Breast Care Center. She is passionate about patient education and clinical research. She also treasures time with her family and enjoys travel, running, and scuba diving.