Get support: cancer is not just about medical treatment and it is vital that patients and families access support through family and friends, cancer non-profit organizations or both. I remember a young mother who was diagnosed with cancer. When she was initially diagnosed she wasn’t interested in accessing support services because she had a large, supportive family. When her cancer recurred, she realized that she was falling apart and needed to be able to talk with someone who understood what she was going through. She came into our resource center and as she told us, completely fell apart in the counselors office, something she wasn’t able to do around her family.
Cancer is a horrible and terrifying disease. There is so much great information out there, but sometimes it is very difficult to filter out the noise. What causes cancer? Can it be prevented? How do you detect it? What are the odds of survival today? What are the different forms of cancer? What are the best treatments? And what is the best way to support someone impacted by cancer?
In this interview series called, “5 Things Everyone Needs To Know About Cancer” we are talking to experts about cancer such as oncologists, researchers, and medical directors to address these questions. As a part of this interview series, I had the pleasure of interviewing Rob Tufel, MSW, MPH; CEO of Cancer Support Community SF Bay Area.
Rob Tufel, MSW, MPH, is the CEO of Cancer Support Community SF Bay Area. He brings more than 25 years of experience working in the non-profit sector where he created, implemented and managed a variety of innovative social service, research and health programs. He began his career volunteering in the LGBTQ community as well as working in low-income communities impacted by HIV which deepened his passion and dedication to health. He has also worked as the Executive Director of Cancer CAREpoint, a non-profit organization in Silicon Valley that provides free support services to cancer patients and their families; the Executive Director of the Ben and Catherine Ivy Foundation, the nation’s largest private funder of brain cancer research; and the Executive Director of the National Brain Tumor Foundation. He received his B.A. from Oberlin College and Masters’ Degrees in Social Welfare and Public Health from U.C. Berkeley.
Thank you so much for joining us in this interview series! Before we dive into the main focus of our interview, our readers would love to “get to know you” a bit better. Can you tell us a bit about your childhood backstory?
I grew up in New York and moved to California after graduating from Oberlin College.
What or who inspired you to pursue your career? We’d love to hear the story.
I got inspired to be involved in public health during the AIDS crisis in SF and began volunteering at numerous health organizations including the SF AIDS Foundation and Planned Parenthood.
This is not easy work. What is your primary motivation and drive behind the work that you do?
Health is the great equalizer and cancer impacts everyone. I find that being a part of providing support to cancer patients and their families during one of the most difficult times of their lives is incredibly rewarding and fulfilling. It also gives me perspective on my own life and challenges.
What are some of the most interesting or exciting projects you are working on now? How do you think that might help people?
At Cancer Support Community SF Bay Area we are working on a research project with Stanford Health Care looking at the needs of Black cancer patients and their families, barriers to accessing support services and how we can develop programs that are more responsive to the needs of underserved communities.
For the benefit of our readers, can you briefly let us know why you are an authority about the topic of Cancer?
I have two Masters degrees — one in Social Welfare and the other in Public Health — from UC Berkeley and have been working in oncology for the past 25 years. I have directed 2 non-profit cancer support organizations and one family foundation focused on cancer research and am currently the CEO of Cancer Support Community SF Bay Area. I am also a cancer survivor.
Ok, thank you for all of that. Let’s now shift to the main focus of our interview. Let’s start with some basic definitions so that we are all on the same page. What is exactly cancer?
Cancer are cells which divide without control and can invade tissue or spread to other parts of the body through the blood and lymph systems.
What causes cancer?
Cancer is caused by many different things including lifestyle, inherited genes, exposure to cancer-causing agents, viruses and bacteria.
What is the difference between the different forms of cancer?
This is a complicated question since there are so many types of cancer. For example, there are over 100 different types of brain tumors alone.
Different cancers originate in different parts of the body and some are more aggressive than others. There are also some cancers that are more common in different age groups and different genders but the majority of cancers are diagnosed in adults over the age of 55.
I know that the next few questions are huge topics, but we’d love to hear your thoughts regardless. How can cancer be prevented?
A healthy lifestyle (e.g. eating right, exercise, etc.) can reduce the risk of cancer and reduce the risk of recurrence if you have already been diagnosed. In addition, avoiding exposure to things that we know cause cancer (e.g. smoking, known carcinogenic chemicals, etc.) can help reduce the risk of cancer. But we still don’t know exactly why one person will get cancer and one person will not.
How can one detect the main forms of cancer?
Cancer can be detected by a biopsy, labs and imaging tests and examining tissue to see if it contains cancer cells.
Cancer used to almost be a death sentence, but it seems that it has changed today. What are the odds of surviving cancer today?
In the 1930’s the five year survival rate was 1 in 5 people and today it is 3 in 5 people. While we have made incredible progress in diagnosing and treating cancer, the cancer survival rate is also determined by a person’s income, ethnicity, access to health care, gender and cancer type.
Can you share some of the new cutting-edge treatments for cancer that have recently emerged? What new cancer treatment innovations are you most excited to see come to fruition in the near future?
My focus is on psychosocial support not medical treatments.
Healing usually takes place between doctor visits. What have you found to be most beneficial to assist a patient to heal?
No one should have to face cancer alone. One of the most beneficial ways to help patients and families heal is to have strong support systems plus access to the many supportive services offered by non-profit cancer organization.
From your experience, what are a few of the best ways to support a loved one, friend, or colleague who is impacted by cancer?
Listen, be consistent and constant, make specific rather than general offers of assistance, don’t offer to do things you can’t or are unable to do, respect their choices, remember that they don’t always want to talk about cancer; understand that there are times they may be feeling angry, depressed or anxious and it’s not about you, respect their boundaries and understand yours, be sincere, remember that the caregiver also needs support.
What are a few of the biggest misconceptions and myths out there about fighting cancer that you would like to dispel?
Sometimes people who “fight” their cancer are able to beat it and sometimes they are not. Taking an active role in treatment, advocating for yourself and accessing support services is vital to improving a patient’s quality of life, It is important not to blame patients if their cancer still progresses. The misconception among some people is that all it takes is a positive attitude to beat cancer and if a patient is not doing well then they don’t have the right attitude.
Thank you so much for all of that. Here is the main question of our interview. Based on your experiences and knowledge, what are your “5 Things Everyone Needs To Know About Cancer? Please share a story or example for each.
- Get support: cancer is not just about medical treatment and it is vital that patients and families access support through family and friends, cancer non-profit organizations or both. I remember a young mother who was diagnosed with cancer. When she was initially diagnosed she wasn’t interested in accessing support services because she had a large, supportive family. When her cancer recurred, she realized that she was falling apart and needed to be able to talk with someone who understood what she was going through. She came into our resource center and as she told us, completely fell apart in the counselors office, something she wasn’t able to do around her family.
- When the patient is diagnosed with cancer the entire family/caregivers are diagnosed: Family members/caregivers are impacted by a cancer diagnosis and also need support to be able to care for the patient. Patients often tell us that their family members/caregivers have a harder time than they do. The caregiver is not only responsible for caring for the patient emotionally, physically and often financially, they also have to care for the rest of the family while at the same time continuing to hold down a job. This can often be overwhelming for the family member/caregiver and support services can help them cope with their new role.
- Go to medical appointments with a friend or family member: Medical appointments can be physically, emotionally and intellectually challenging. It is important that the patient has someone who can help ask questions and take notes. It is also good to write down questions prior to your medical appointment.
- Cancer is expensive: Research resources that are free to access or programs that can help cover financial costs. This is a good thing to ask family/friends to do. I remember one patient, a single mother, who came into our nonprofit resource center to get a wig during her chemotherapy. When she asked how much it cost and we told her it was free she burst into tears. She had been to another wig shop and realized she couldn’t afford the wigs they offered. She told us that at some point she realized she couldn’t afford to have cancer so our free support programs were a Godsend.
- Find a healthcare team who you trust, like and is experienced and respected in treating people with your cancer type: Patients and family members are often reluctant to seek new medical providers if they are not satisfied with the ones they have or to get a second opinion. I remember hearing one of the country’s leading neurosurgeons tell a group of patients and families to always get second opinions and said he always encourages his patients to get second opinions as well. He also added that if your doctor has a negative reaction to your getting a second opinion, that tells you something about the doctor. Hearing that from a leading surgeon was incredibly powerful for the patients and family members. I also remember a patient who was diagnosed with a very aggressive tumor. When her physician gave her the diagnosis he told her that 95% of people with her type of tumor die within one year. She responded by saying “your fired” and found a new physician. She ended up living far beyond what the original physician had told her.
You are a person of great influence. If you could start a movement that would bring the most amount of good to the most amount of people, what would that be? You never know what your idea can trigger. 🙂
My movement would be to change societal attitudes so emotional, educational and practical support programs are viewed as important as medical treatment. If I had unlimited funding I would start a national public health campaign that would appear in all the major newspapers, on TV and on social media educating cancer patients and their families about the need for support services and what is available. This is especially important as the annual number of cancer cases will increase 49% from 2015 to 2050 and we are not prepared to support all these patients and families.
How can our readers further follow your work online?
Readers can visit our website at www.cancersupport.net and follow us on Facebook https://www.facebook.com/CSCBayArea Twitter (@CancerSupportSF), Instagram (@CancerSupportSF) and LinkedIn. https://www.linkedin.com/company/2800334. They are also free to email me directly at [email protected]
Thank you so much for these insights! This was very inspirational and we wish you continued success in your great work.