A Guy with Two Cancers Explores Treatments and Life”

“A Guy with Two Cancers Explores Treatments and Life” (Burt Rosen) [#112] Brad Power September 4, 2024 “Knowledge is power for me, so I started to learn as much as I could. I started to go to every support group I could find, and read everything I could find.” – Burt Rosen “Even though I'm living with this crap inside me, I'm still trying to enjoy my life every way I can.

” – Burt Rosen “The stronger I am mentally, the stronger I feel physically, and the more I feel like I can overcome everything.” – Burt Rosen “You're going to give me chemo, radiation, surgery, immunotherapy, or maybe a targeted therapy. But how do I take care of Burt? Everything you're going to do for me is designed to kill the bad stuff inside me.

Nothing is designed to take care of the good stuff inside me or help my body deal with the bad stuff.” – Burt Rosen Meeting Summary "Engaged patients get better outcomes" is one of our core beliefs at the Cancer Patient Lab. But what does a very engaged patient look like? Consider the story of Burt Rosen.

Diagnosed in July 2022 with two primary cancers (renal clear cell carcinoma and advanced pancreatic neuroendocrine tumors), Burt has done everything possible to make sure he continues to enjoy his life. He doesn't let himself be defined by his health issues and repeatedly pushes himself out of his comfort zone.

Whether it is camping and hiking in Glacier National Park three months after a major liver surgery, hiking when he can, traveling, volunteering, meeting tons of people, starting nonprofits, learning all about Integrative oncology, and looking for full-time jobs, Burt does as much as he can to make sure his mental health is doing great since he feels better physically when he feels better mentally.

What has Burt Rosen learned? ●Enjoy life as much as you can, despite your health challenges , such as taking a solo road trip to Glacier National Park, jumping out of an airplane. ●Adopt integrative oncology practices , including yoga, diet, exercise, and meditation. ●Live life and don’t let cancer define you , a philosophy of "I can do it" and "I will do it.

" ●Don’t get stressed when bad things happen. Life goes on. Once you get diagnosed with cancer, there is no deal that nothing else bad will happen to you. ●Learn as much as you can , because knowledge is power. Go to every support group you can find; read everything you can find. ●Surgery has risks that nobody ever thinks about when they're making these decisions.

Many people want to get it out as fast as possible.

“A Guy with Two Cancers Explores Treatments and Life” (Burt Rosen) [#112] ●View cancer as a gift. Learn to appreciate life, everything, and everybody. Figure out the things you don't appreciate, and cut them out of your life. ●Never think of yourself as a “cancer patient” , be very focused on who you are, and you happen to have cancer. Love who you are, not who you were. ●Never shortchange the experience part of living with cancer vs. th

ybody. Figure out the things you don't appreciate, and cut them out of your life. ●Never think of yourself as a “cancer patient” , be very focused on who you are, and you happen to have cancer. Love who you are, not who you were. ●Never shortchange the experience part of living with cancer vs. the treatment part. ●Focus on the time you have to take care of yourself (>99%) vs.

the time you spend in medical treatment (<1%). ●Live one day at a time , set a goal for today and get through today and don’t worry about things you can't control in the long term. What does Burt do? ●He makes sure he has vegetables in every meal. ●He limits his junk food. ●If he can be outside, he goes outside. ●If he can take a walk, if the fatigue isn't too bad, he takes a walk. ●He does yoga.

●He meditates. ●He goes to therapy once a week. ●He takes some supplements, mostly vitamins. What are Burt’s recommended information resources?

●For neuroendocrine tumors (NETs) ○Neuroendocrine Cancer Awareness Network (NCAN) ○Learn Advocate Connect Neuroendocrine Tumor (LACNETs) ○The Neuroendocrine Tumor Research Foundation (NETRF) ○The Cholangiocarcinoma Foundation (CCF) ●For pancreatic neuroendocrine tumors ○Pancreatic Cancer Activation Network (PanCAN) ○Let’s Win Pancreatic Cancer ●For integrative oncology ○The Society for Integrative Oncology ○CancerChoices - They do reviews of things like a keto diet, cite their scientific sources, and grade it in a couple of different categories, including confidence.

●For life with cancer ○Triage Cancer ○Cancer101 ○Cancer Patient Lab ●For l inks to all of Burt’s resources How can you learn more about engaged patients and the better outcomes they have gotten and Burt’s views on living with cancer?

“A Guy with Two Cancers Explores Treatments and Life” (Burt Rosen) [#112] ●See our discussions with Ari Akerstein, Mark Taylor, Brian McCloskey, Robb Owen, and Brad Power ●Contact Burt at jburtrosen@gmail.

com ●Read Burt’s blog: Adventures with NETs Blog ●Join one of Burt’s Facebook groups: ○For people in Portland or connected to the Oregon area who have neuroendocrine tumors: PDX Netswork ○For people from all over the world who don't want to deal with cancer politics: Adventures With NETs The information and opinions expressed on this website or platform, or during discussions and presentations (both verbal and written) are not intended as health care recommendations or medical advice by Cancer Patient Lab, its principals, presenters, participants, or representatives for any medical treatment, product, or course of action.

You should always consult a doctor about your specific situation before pursuing any health care program, treatment, product or other course of action that might affect your health.

“A Guy with Two Cancers Explores Treatments and Life” (Burt Rosen) [#112] Meeting Notes KEYWORDS neuroendocrine, cancer, Burt, integrative oncology, treatment, tumor, ohsu, hospital, neuroendocrine t

re pursuing any health care program, treatment, product or other course of action that might affect your health.

“A Guy with Two Cancers Explores Treatments and Life” (Burt Rosen) [#112] Meeting Notes KEYWORDS neuroendocrine, cancer, Burt, integrative oncology, treatment, tumor, ohsu, hospital, neuroendocrine tumors, patient, people, scan, cancer patient, talk, surgery, question, chemo, integrative, acupuncture, ucsf SPEAKERS Burt Rosen (63%), Rick Davis (11%), Brad Power (10%), Chris Apfel (7%), Emma Shtivelman (3%), Brian McCloskey (2%), Roger Royse (2%), Chad Magnussen (1%) SUMMARY Burt Rosen, a patient advocate and cancer survivor, shared his journey with two primary cancers: renal clear cell carcinoma and pancreatic neuroendocrine tumor.

He discussed his treatment journey, including seven months of oral chemotherapy and liver surgery. He emphasized the importance of integrative oncology, such as diet, exercise, and meditation, in managing his condition. He also highlighted the need for better genomic testing and the role of integrative oncology in improving patient outcomes.

The discussion included the challenges of accessing integrative oncology services and the importance of community support for patients. OUTLINE Introducing Burt Rosen ●Burt Rosen is a multi-dimensional patient advocate and survivor. ●He is a native New Yorker living in Portland, Oregon. ●His career has been in marketing, focusing on smaller and middle-sized companies.

●He was diagnosed with two primary cancers: renal clear cell carcinoma and pancreatic neuroendocrine tumor. ●He is involved in the integrative oncology world. ●He has a passion for volunteering. Burt's Diagnosis and Initial Treatment ●Burt’s diagnosis started with a brain fog episode at a healthcare conference in Boston in May 2022.

●He was admitted to the hospital in July 2022 for ammonia buildup and internal bleeding, leading to the discovery of two cancers. ●The initial focus was on stopping the bleeding and then shifting to cancer treatment. ●The aggressive treatment plan for his neuroendocrine tumor included a dotatate PET scan and oral chemotherapy.

●Knowledge was important and he got involved in support groups to learn more about his condition.

“A Guy with Two Cancers Explores Treatments and Life” (Burt Rosen) [#112] ●Burt’s treatment journey included seven months of oral chemotherapy and liver surgery in June 2023. ●He had lung surgery and decided to delay further surgery to attend his daughter's college graduation.

●He works to enjoy life despite his health challenges and shares his adventures, such as a solo road trip to Glacier National Park. ●He talks about the importance of integrative oncology practices, including yoga, diet, exercise, and meditation. ●He highlights the significance of living life and not letting cancer define him, sharing his philosophy of "I can do it" and "I will do it.

health care program, treatment, product or other course of action that might affect your health.

“A Guy with Two Cancers Explores Treatments and Life” (Burt Rosen) [#112] Meeting Notes KEYWORDS neuroendocrine, cancer, Burt, integrative oncology, treatment, tumor, ohsu, hospital, neuroendocrine tumors, patient, people, scan, cancer patient, talk, surgery, question, chemo, integrative, acupuncture, ucsf SPEAKERS Burt Rosen (63%), Rick Davis (11%), Brad Power (10%), Chris Apfel (7%), Emma Shtivelman (3%), Brian McCloskey (2%), Roger Royse (2%), Chad Magnussen (1%) SUMMARY Burt Rosen, a patient advocate and cancer survivor, shared his journey with two primary cancers: renal clear cell carcinoma and pancreatic neuroendocrine tumor.

He discussed his treatment journey, including seven months of oral chemotherapy and liver surgery. He emphasized the importance of integrative oncology, such as diet, exercise, and meditation, in managing his condition. He also highlighted the need for better genomic testing and the role of integrative oncology in improving patient outcomes.

The discussion included the challenges of accessing integrative oncology services and the importance of community support for patients. OUTLINE Introducing Burt Rosen ●Burt Rosen is a multi-dimensional patient advocate and survivor. ●He is a native New Yorker living in Portland, Oregon. ●His career has been in marketing, focusing on smaller and middle-sized companies.

●He was diagnosed with two primary cancers: renal clear cell carcinoma and pancreatic neuroendocrine tumor. ●He is involved in the integrative oncology world. ●He has a passion for volunteering. Burt's Diagnosis and Initial Treatment ●Burt’s diagnosis started with a brain fog episode at a healthcare conference in Boston in May 2022.

●He was admitted to the hospital in July 2022 for ammonia buildup and internal bleeding, leading to the discovery of two cancers. ●The initial focus was on stopping the bleeding and then shifting to cancer treatment. ●The aggressive treatment plan for his neuroendocrine tumor included a dotatate PET scan and oral chemotherapy.

●Knowledge was important and he got involved in support groups to learn more about his condition.

“A Guy with Two Cancers Explores Treatments and Life” (Burt Rosen) [#112] ●Burt’s treatment journey included seven months of oral chemotherapy and liver surgery in June 2023. ●He had lung surgery and decided to delay further surgery to attend his daughter's college graduation.

●He works to enjoy life despite his health challenges and shares his adventures, such as a solo road trip to Glacier National Park. ●He talks about the importance of integrative oncology practices, including yoga, diet, exercise, and meditation. ●He highlights the significance of living life and not letting cancer define him, sharing his philosophy of "I can do it" and "I will do it.

the importance of integrative oncology practices, including yoga, diet, exercise, and meditation. ●He highlights the significance of living life and not letting cancer define him, sharing his philosophy of "I can do it" and "I will do it.

" Integrative Oncology and Support Groups ●Burt discusses his involvement in integrative oncology and the benefits of practices like yoga, meditation, and a healthy diet. ●The Society for Integrative Oncology provides guidance on complementary cancer therapies for patient-centered care. ●Support groups provide community and connection.

●A balanced approach to cancer treatment combines medical interventions with lifestyle changes. ●He provides resources for participants interested in integrative oncology, including his blog and Facebook groups.

Discussion on Neuroendocrine Tumors and Integrative Oncology ●Brian McCloskey and Emma Shtivelman discuss their experiences with neuroendocrine tumors and the importance of early detection. ●Chris Apfel shares his experience with a neuroendocrine carcinoma patient and the challenges of finding effective treatments.

●Rick Davis and Burt discuss the importance of identifying neuroendocrine tumors early and the role of integrative oncology in cancer treatment. ●The conversation highlights the need for better genomic testing and the challenges of accessing integrative oncology services. ●Participants share their experiences with integrative oncology and the benefits of these practices in managing cancer.

Final Thoughts and Resources ●Burt shares his contact information and encourages participants to reach out if they have any questions or need support. ●He emphasizes the importance of community and helping others in the cancer journey. ●Participants discuss the importance of integrative oncology and the need for better access to these services.

●The meeting concludes with a reminder of the resources available for participants, including the Society for Integrative Oncology and Cancerchoices.org. ●Burt reiterates his commitment to helping others and encourages participants to stay connected and supportive of each other.

“A Guy with Two Cancers Explores Treatments and Life” (Burt Rosen) [#112] TRANSCRIPT Brad Power This is the Cancer Patient Lab and our weekly webinar series. Today we're honored to have Burt Rosen with us. Burt is a multi-dimensional patient advocate and cancer survivor. He's got a story to tell about how he's managed his own care.

We've been friends for a long time, I think from even before he got all of his diagnoses and went on his treatment journey. He's based in Portland, Oregon, where I have family, and so I spend a fair amount of time. This is for information purposes only. We're just sharing medical advice with you.

We are a patient-led nonprofit, and we depend on the kindness of members and friends who donate money. If you're interested in donating money, please do so through our website.