About SURVIVEiT

Our mission is to empower you to define your journey and face cancer on your own terms.

Our vision is a world free from the fear of cancer.

SURVIVEiT is a registered 501(c)(3) nonprofit organization. EIN 46-3365665

What do we do?

We work to facilitate informed-decision making. Through experience-based wisdom, we guide, teach, and support you to define and navigate your chosen path to face cancer with hope.

How do we do it?

We cut through the noise to help you navigate the convoluted process of managing the disease. The SURVIVEiT® Cancer Navigation Tool offers best-in-class resources and objective information in a personalized, easy-to-use tool from the moment of diagnosis. Our hope is that it helps you as you make critical decisions and seek the best outcomes possible.

Why does it matter?

Everything we do is guided by the wisdom and urgency that can only come from having faced cancer ourselves. We are constantly. moved to help empower you and others to define your journeys and face cancer fearlessly.

Meet Our SURVIVEiT Leadership Team

EXECUTIVE DIRECTOR

Joy Brewster Rusthoven

Executive Director
When her father was diagnosed with cancer weeks after his 52nd birthday, Joy Rusthoven became his sole caregiver, joining him in a 14-month battle against a disease—and a system—that demanded countless seemingly-impossible decisions.

Like so many caregivers, she wanted to do everything in her power to make sure her father was receiving the best care regardless of her limited knowledge in navigating such a convoluted system. At a pivotal time in their journey, a close friend introduced her to Matt Ellefson, who had created SURVIVEiT to help people facing the exact same challenges.

After losing her father, the bittersweet, complicated and haunting experience fueled her passion to do her part in making sure others didn’t experience cancer the way she and her beloved father did.

Hired as the organization’s Director of Operations and User Engagement in 2017, Joy went on to succeed Ellefson as Executive Director at the end of 2018. “It’s going to take boldness, experience, compassion and focus to make the impact we want to make, and Joy has all of those things," Ellefson stated in the press release announcing the appointment.

Joy is currently harnessing those qualities in her efforts to run the organization, focusing specifically on the development of a new, digital tool that gives patients and caregivers the peace of mind, sense of control, and access to better care that she longed for her during her journey.

In her spare time, she can be found enjoying the great outdoors of Colorado with her husband and their dogs, Maggie and Otis, traveling, and cooking.

EXECUTIVE BOARD OF DIRECTORS

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Tina Trenkler
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Learn more about our Councils, Committees, and Boards.

Dr. Lieu joined the University of Colorado School of Medicine faculty in July 2011.  He trained in internal medicine at the University of Colorado, where he served as a Chief Medical Resident.  He completed his fellowship training in medical oncology at the University of Texas MD Anderson Cancer Center and also served as the Chief Medical Oncology Fellow.  Dr. Lieu is the Associate Director for Clinical Research and Director of GI Medical Oncology at the University of Colorado Cancer Center, the Vice-Chair of the National Cancer Institute Colon Cancer Task Force, and he serves on the National Comprehensive Cancer Network (NCCN) Panel for Neuroendocrine Cancers.

Research

Dr. Lieu is a member of the Developmental Therapeutics (phase I clinical trials) and Gastrointestinal (GI) Medical Oncology Program.   These comprehensive programs include multidisciplinary cancer clinics, tumor boards, and research endeavors.  Dr. Lieu is interested in resistance mechanisms to targeted therapy in GI cancers, and he was awarded the Conquer Cancer Foundation Career Development Award, NIH K23 grant, and a NIH R01 grant to study targeted therapies in colorectal cancer.  Dr. Lieu is also investigating novel therapeutic strategies to more effectively treat and prevent colorectal cancer in young adults.

Dr. Prasanth Reddy is a Senior Director in Medical Affairs at Foundation Medicine, based in Cambridge, Massachusetts. Foundation Medicine performs comprehensive genomic sequencing to identify the molecular alterations in each patient's unique cancer and match them with relevant targeted therapies, immunotherapies, and clinical trials. Prior to Foundation Medicine, Dr. Reddy jointly led the Shawnee Mission Cancer Center in Kansas. He has also practiced as a hematologist/oncologist at Olathe Medical Center in Kansas. Dr. Reddy is board certified in Medical Oncology, Hematology, and Internal Medicine. He completed his medical training, residency, and two fellowships at the University of Kansas Medical Center. Dr. Reddy is a member of the American College of Physicians and the American Society of Clinical Oncology.

Fred Ashbury is a behavioural scientist.  He received his Bachelor’s degree (Honours) from the University of Toronto, his Master’s degree from Queen’s University, and his doctorate from York University.
As co-Founder and Chief Scientific Officer at Viviphi Ltd, Fred is responsible for developing and maintaining Viviphi Ltd’s oncology clinical content, genomic-science knowledge identification and codification, and the design and implementation of the treatment strategy rules that underpin the ViviphiTM platform. Dr. Ashbury was co-Founder of Intelligent Improvement Consultants, a healthcare management consulting firm, which merged with Viviphi Ltd. He is the former Senior Executive with the National Cancer Institute of Canada, Cancer Care Ontario, and the Alberta Cancer Board. Additionally, Fred was the first scientific director of the Ontario Health Study, a population cohort study investigating lifestyle, environmental and genetic factors in chronic disease onset for preventive oncology.
Dr. Ashbury is the former Senior Executive with OpTx Corporation – the first medical oncology electronic medical record - purchased by Varian Medial Systems (EMR relabelled ARIATM). He is the former Vice-President of BridgeSite Clinical Research, a clinical research organization supporting investigator-initiated trials in oncology. Dr. Ashbury also founded two other successful healthcare management consultancies with clients in the US, Canada, UK, Germany and Australia earning several million dollars in revenue. He has mentored oncology practices and networks worldwide to define key performance indicators and quality metrics based on current evidence and practice to be used to establish practice accountability, reporting and quality improvement. Dr. Ashbury is an active member of ASCO; Board Member, Multi-National Association of Supportive Care in Cancer (MASCC); Chair, Guidelines Committee, MASCC; Member, University of Swinburne, Industry Research Advisory Committee. University Appointments: University of Toronto, Canada. He has published 80+ peer-reviewed articles and major reports in health services delivery, quality in cancer care, and supportive care. Dr. Ashbury is the Editor-in-Chief of top-ranked journal in supportive care in oncology, Supportive Care in Cancer. He and his wife, Gail, have two sons, Andrew and Jeremy. Fred loves travel and music.

Dr. Chad Rusthoven, MD is a radiation oncologist at University of
Colorado, specializing in thoracic and central nervous system
malignancies. He is active in clinical trial research through the
NCI’s National Clinical Trials Network (NCTN) and is the principal
investigator of SWOG S1827, a randomized phase III trial of MRI
surveillance with and without prophylactic cranial irradiation for
small-cell lung cancer. Dr. Rusthoven serves on the National
Comprehensive Cancer Network (NCCN) treatment guideline panels for
both small-cell lung cancer and central nervous system tumors. In
2018, he was inducted to the University of Colorado Gold Humanism
honor society for recognition of compassionate patient care. He lives
in Denver with his wife and their two dogs. They enjoy hiking, skiing, tennis,
and live music.

Dr. Vladimir Lazar obtained his MD (1989) at The University of Timisoara (Romania), First in Class and Certificate of Merit “Magna cum Laudae”. He became a specialist in Clinical Biology (DIS, 1997, University Rene Descartes in Paris) and obtained his PhD in molecular biology (1997) at The University René Descartes in Paris, with the highest degree and the Prize of University. Dr. Vladimir Lazar is specialized in clinical biology, molecular biology, molecular pathology and has a broad training, education and postgraduate degrees in biotechnology (first in class) and project management. He is a recognized specialist in translating research into clinical applications. He was the founder and Head of Gustave Roussy’s Genomic Center and Integrated Biology Platform (2002-2015) running the Agilent European reference and training center. He is the founder and Chief Operating officer of the WIN Consortium. In these positions he has built a strong expertise in project design, technology evaluation and implementation, use of genomics and biomarkers in oncology, companion test development, and biology driven clinical trials. He is author of 6 patents and author-co-author of more than 100 publications.

Paul currently serves as Medical Director, Medical Affairs for CVS Caremark. He completed his undergraduate studies at the University of South Dakota and received his MD degree from Indiana University School of Medicine.  He is board certified in family practice and serves as a clinical professor in the Department of Family Medicine at the Sanford School of Medicine at USD.  Following 15 years of clinical practice in Sioux Falls, he served as Chief Medical Officer for DAKOTACARE Health Plan until early 2017, before moving to his current role with CVS Health. Paul is an active member of the American Academy of Family Physicians, The South Dakota Academy of Family Physicians, National Academy of Managed Care Physicians, American Medical Association and the South Dakota State Medical Association.

Paul travels annually to Nicaragua for volunteer short-term medical mission work and was honored as the 2010 recipient of the SDSMA Community Service Award. He and his wife Alison enjoy cycling and world travel. In addition, he has three sons with whom he enjoys numerous outdoor sporting activities.

Professor Leyland-Jones is an internationally renowned breast cancer expert, a consulting Professor for the Division of Oncology at Stanford University School of Medicine, and Vice-President of Molecular and Experimental Medicine at the Avera Cancer Institute. Prof. Leyland-Jones was most recently Director of Edith Sanford Breast Cancer Research in Sioux Falls. He came to Sioux Falls from Atlanta, Ga., where he was Executive Vice-President and Director of the Winship Cancer Institute and Chair of Hematology-Medical Oncology at Emory University School of Medicine. Professor Leyland-Jones lead the Centre to obtain National Cancer Institute Cancer Centre Designation, the first in the State of Georgia, and for the first time in 30 years. He was named both the Georgia Research Alliance Eminent Scholar and Georgia Cancer Coalition Distinguished Cancer Scholar. Dr. Leyland-Jones earned biochemistry, medical and PhD degrees from the University of London. After postgraduate training in London, he completed fellowships in medical oncology and clinical pharmacology at Memorial Sloan-Kettering Cancer Center and Cornell University Medical College, and then went become Assistant Professor in both disciplines at both institutions. Dr. Leyland-Jones subsequently served as head of the Developmental Chemotherapy Section at the National Cancer Institute, and then founding Chairman of the
Department of Oncology, Minda de Gunzburg Chair in Oncology, Professor of Medicine and Oncology, and Director of the McGill Comprehensive Cancer Center at McGill University in Montreal, Canada. He has over 35 years experience in oncology, molecular and clinical pharmacology: his whole life has been devoted to the development of a broad spectrum of novel therapeutic approaches, and associated biomarkers. His major contributions have been specifically in the areas of platinum, anthracyline, taxane. trastuzumab, erythropoiesis-stimulating agents, mTOR/ IGF1R clinical trials, preclinical models and clinical/ molecular pharmacology. He has
been responsible for coordinating biospecimen collection guidelines globally and has built a CLIA facility for biomarker profiling. He is also deeply involved with IBCSG, BIG and iSPY2 trials and formerly coordinated the ECOG Breast Molecular Profiling Working Group. His more recent focus has been the application of combined array/ sequence profiling to large retrospective cooperative group and intergroup trial sets with the goal of determining key drivers and parallel pathways, and the application of this knowledge to Forward Genomic
oncology trials. Dr. Leyland-Jones is the recipient of numerous research grants, and has served as principal,
co-principal and co-investigator on more than 100 clinical studies. He has authored and coauthored more than 190 peer-reviewed articles and book contributions, 23 books and book chapters, 326 abstracts and 34 patents.

Sharon Hunt, Vice President of Cancer Services at Sanford Health, has been in health care for over 20 years and has led at the executive level at Sanford Health for the past five. Sharon has the privilege of integrating cancer services throughout the spectrum of care, between disciplines and across the geography of the region. Although involved in all aspects of cancer care, Sharon’s passion lies in the implementation of translational research, and specifically in weaving research into daily cancer care. A true advocate of excellence in patient care, Sharon firmly believes in building robust community-based cancer care services to both provide clinical care of exceptional quality to patients, and to translate advances in cancer care into the community setting.

Involved in initiatives to combat breast cancer (Edith Sanford Breast Center) and integrate genomics into medicine (Imagenetics), Sharon supports cancer operations from prevention and early detection, through treatment and survivorship. She impacts all areas of cancer services including medical oncology and hematology, radiation oncology, gynecologic oncology, surgical oncology, infusion, oncologic and investigational pharmacy, clinical trials and helps lead Sanford’s participation in National Cancer Institute’s Community Cancer Center’s Program (NCCCP) and NCI’s Community Oncology Research Program (NCORP).

Sharon grew up in Minnesota and worked as a research chemist for 3M before moving to South Dakota and Sioux Falls over 20 years ago. Sharon has served on the Susan G. Komen race board and survivorship committees, volunteers for the American Cancer Society and sits on the South Dakota Arthritis Foundation board. She enjoys reading, running, and activities with her grown children and her husband.

Kris Gaster has over 30 years of cancer care experience working at Avera McKennan Hospital and Avera Cancer Institute. She started her career in cancer care as an oncology RN and then became a Certified Nurse Practitioner in oncology. She was instrumental in setting up the bone marrow transplant program. For the past 13 years, she has served as Avera’s Assistant Vice President of Outpatient Clinics and is responsible for the daily operations of medical oncology, gynecology oncology, hematology and bone marrow transplant, radiation oncology, infusion, breast surgeons and integrative medicine as well as Avera Cancer Institute services and programs. She was also part of the team that planned the Avera Cancer Institute, Prairie Center.

Kris is passionate about cancer care and ensuring that those affected by cancer and their loved ones have access to the highest level of care that is focused on healing the whole person. She seeks the input of patients and loved ones with  every element of the cancer program to remain true to her passion of serving those affected by cancer.

Kris resides in Sioux Falls. In her spare time she enjoys many activities with her husband, three children and their spouses. She enjoys being outside and being on the water. She previously served as the president of the Sioux Falls Area Oncology Nursing Society, American Cancer Society South Dakota board chairman and is an American Cancer Society Cancer Action Network Volunteer.

Kirstin Williams is an oncology nurse practitioner at the Avera Precision Oncology clinic.  She has sixteen years of oncology experience in both pediatric and adult settings.  Kirstin received her undergraduate nursing degree at Augustana college and her masters of nursing science at the University of Kansas.  She recently completed her PhD in nursing at the University of Kansas where she conducted the first-known research study that focused on symptoms and quality of life in patients receiving genomically-guided therapy (matched therapy).  She plans on continuing research in this area.  In her free time, Kirstin loves to spend time with her husband and two children, ages 9 and 7.

Q. If you had one minute to tell someone about yourself, what would you say?

A. I am a wife and a mother.  I am a seeker and a believer.  I had a 26-year career as a licensed massage therapist and Somatic Experiencing Practitioner. I am a vocalist. I love the mountains and the oceans. I love to travel and explore.  I am an animal lover.  I enjoy reading. I am a meditator and I pray. I find great satisfaction in helpingothers maneuver through the complex world of cancer treatments and sharing my views on thriving with cancer. I am a student of experiencing life while living in the moment. I am a cancer survivor.

Q.Knowing what you know today, what are the first three things you would do after being diagnosed with cancer for the first time? Why?

A.  1. I would do my best not to panic. Fear stops us from recognizing that there are many options when it comes to cancer treatment. Allowing time to digest test findings makes it easier to disseminate information to family and friends. Don’t allow anyone to pressure you into a treatment because of fear. Take the time to become informed.

2.  I would seek a second opinion with a specialist in my specific type of cancer.

Not every oncologist is a specialist in your type of cancer.  Getting a second opinion does not mean that you don’t trust your doctor. You are your own best advocate   so seek the best and most up to date options from the specialists in the field. 

3. I would ask for my cancer to be tested for genomic mutations and bio markers.

Getting the results from these tests helps inform your doctors to the best possible treatments for your specific cancer.  Having these results can also alert you and your oncologist to newly approved drugs and clinical trials.

Q. What is the best way to support someone (and their family) who has just been diagnosed with cancer?

A. First and foremost: Listen. They have just received a shock and need time to process.  Be prepared to answer questions and/or give references to where they can find answers to their questions. Offer hope in the best ways you know how without giving false hope.

Q. Where do you find hope, inspiration and strength?

A. I find strength comes from my spiritual beliefs. Hope, I find in stories about others who are on a similar journey. Inspiration, I find in science as well as seeking out others who are thriving while living with cancer.

Q. What do you want others to know about surviving cancer?

A. Surviving with cancer is a cyclical process.  There will be days that you are not your best and there will be days when you feel wonderful so be gentle with yourself. There will be days that you wonder if the treatment is worth the side effects. Complementary treatments such as acupuncture, massage, yoga, meditation and energy work can go hand in hand with medical treatments. There is also an opportunity to discover who you truly are on a very deep and intrinsic level. YOU choose how to approach your cancer. By this I mean we can choose to live, truly LIVE, without the need to know ‘how long' we have to live.

Q. What has been the most rewarding experience in your cancer journey?

A. Meeting extraordinary survivors, doctors, researchers and advocates who share a similar desire to further understanding, research and survivorship.

Q. What does SURVIVEiT’s vision, “Creating a world free from the fear of cancer,” mean to you?

A. Cancer does not necessarily mean a death sentence and there are ways to thrive while living with cancer. By tearing apart my beliefs about cancer, I have found that the best way I can share my love and gratitude for life is to live ‘fear-less-ly’!

Q: If you had one minute to tell someone about yourself, what would you say?

A. Hi! My name is Ashley Williams. In 2015, I was diagnosed with Aggressive Fibromatosis of the left popliteal fossa following a major car accident. This is a type of desmoid tumor, which is a type of sarcoma, that is located in my left knee. So far, I have been through two rounds of chemotherapy, one intravenous infusion and one oral chemo pill.  I am a Licensed Clinical Social Worker who has a passion for helping people overcome the emotional and physical trauma they experience as a result of their cancer diagnosis.

Q: Knowing what you know today, what are the first three things you would do after being diagnosed with cancer for the first time? Why?

A: 1. Seek support. Cancer and cancer treatment can be an extremely isolating experience. During treatment, I kept much of my emotional pain to myself in an effort to not be more of a "burden" on my family and friends. However, what I really needed was a healthy outlet for those emotions.

2. Research. Upon first being diagnosed, I was in such shock that I COULD NOT bring myself to do any research. Every time I tried the process was traumatic, because there was TOO much information about cancer, and NOT ENOUGH information about my particular diagnosis. However, had I taken the time to do more research upfront, I would have been aware of additional treatment options available to me.

3. Grieve. Upon first being diagnosed, everything can happen so fast. It is easy to jump into all the things that NEED to be done: doctor's appointments, medical tests, etc. I kept myself so busy with cancer and treatment for years, that I never allowed myself the opportunity to grieve. I feel this is such an important step in the process. 

Q: What is the best way to support someone (and their family) who has just been diagnosed with cancer?

A: Acknowledge their diagnosis. It's true, most people don't know what to say when someone is actively experiencing a trauma. By default, we tend to ignore it in an effort to "not remind" the individual of the devastation. I can't tell you how many people ignored what I was going through. The slightest acknowledgement and encouragement went a long, long way. 

Q: Where do you find hope, inspiration and strength?

A: I am a Christian, so I find hope in my relationship with Jesus Christ. 

I find inspiration through my support system who consistently encouraged me. 

I find strength in setting small, realistic, and achievable goals that I set me up for some type of success everyday. During chemo, a goal may have been as small as going downstairs to get a glass of water.

Q: What do you want others to know about surviving cancer?

A: Fighting cancer may be the hardest thing you ever do. Be kind to yourself. 

Q: What has been the most rewarding experience in your cancer journey?

A: Cancer has taught me so many  life lessons: the realization that life is precious and the irreplaceable value of our closest relationships.

Q: What does SURVIVEiT’s vision, “Creating a world free from the fear of cancer,” mean to you?

A: The word "cancer" represents something so vast. There are so many different types of cancer with different levels of aggressiveness requiring different treatment options and bringing about different prognoses. To say cancer is fear-inducing and stressful is an understatement. SURVIVEiT's vision is an AMAZING vision. To bring information and resources to one, organized, central hub eliminates that feeling of feeling there is TOO MUCH information on cancer, but NOT ENOUGH information on your particular diagnosis.

Q. If you had one minute to tell someone about yourself, what would you say?

A. I love bad old scifi movies, collecting pop culture figures, David Bowie, making trinkets with my 3D printer and a good flowchart.  I find my work leading product development and company operations very rewarding.  I‘m a fairly recent survivor of stage III colorectal cancer and I’m a proud member of the SURVIVEiT Executive Board.

Q. Knowing what you know today, what are the first three things you would do after being diagnosed with cancer for the first time? Why?

A. Find the best oncologist for my cancer.  I started by finding the best surgeons and while I had a great team, I realize now that much more of my treatment time was spent with my oncologist.

Q. Talk to someone who has been through a similar diagnosis and treatment plan as mine. While your doctors will give you a lot of information, only someone who went through the process will prepare you for the realities.

A. Get ahead of the nutrition curve before starting chemo. I became very malnourished making it difficult to fulfill my quality of life goals.

Q. What is the best way to support someone (and their family) who has just been diagnosed with cancer?

A. Be there for them and let them be there for you if they have the capacity.  Try to avoid making your interaction all about their cancer.

Q. Where do you find hope, inspiration and strength?

A. I found hope in the belief that this was just another bump in the road that I needed to slow down to conquer. Inspiration came from all those I met along the way who were also fighting this disease. Strength came from my partner, family and friends who helped me get through the tough times with their support, distractions and laughter.

Q. What do you want others to know about surviving cancer?

A. Going through treatment and recovery can be hard. But you will feel better and get back to your life.

Q. What has been the most rewarding experience in your cancer journey?

A. First, I reconnected with my best friend, who was so supportive and never let me feel alone.  Second, I’m so happy now that I’m able to use my experience to help others through SURVIVEiT.

Q. What does SURVIVEiT’s vision, “Creating a world free from the fear of cancer,” mean to you?

A. One of the frightening aspects of having cancer is feeling not in control.  The steep learning curve, abundance and complexity of information and urgency to act makes it hard to know if you’re doing the right things.  Knowing that you’ve asked the right questions and explored all the options gives much more peace of mind that you’ve made the right choices.

Q. If you had one minute to tell someone about yourself, what would you say?

A. I was diagnosed with ovarian cancer 16-years ago. At the time I had a two-year old son, was trying to manage my sales career and felt completely stressed and out of balance. Although it was an extremely difficult time, as I had extensive surgery and chemotherapy, I have learned and grown so much from my experience. I look at my cancer journey as a gift because it led me to live my life with integrity; not only allowing me to focus on what is most important to me but to enhance my life in ways I could have never imagined. Consequently, I decided to quit my job and stay home with my son, and my husband and I were blessed to adopt a second son less than a year after I completed treatment.

After learning how to better take care of myself through proper nutrition, managing my stress and getting in touch with what I truly wanted, I felt better than ever. It was then that I knew I wanted to help others feel the same. So, in March of 2011, I decided to attend the Institute for Integrative Nutrition to become a certified health coach. I am now fortunate enough to help others that have been touched by cancer, whether they have a strong family history or want to prevent cancer recurrence. I help them heal physically, emotionally and spiritually, by teaching them the tools of wellbeing- good nutrition, movement, positive thinking, managing stress and getting in touch with one’s true self.

Q. Knowing what you know today, what are the first three things you would do after being diagnosed with cancer for the first time? Why?

A. 1) I would research the top oncologists according to cancer type and get more than one opinion on treatment protocol.

    2) I would make sure that I had a team of health care providers, incorporating both western and eastern modalities, as I believe that the holistic approach to wellbeing is so important.

    3) I would get support from someone who has been in my shoes.

Q. What is the best way to support someone (and their family) who has just been diagnosed with cancer?

A. Be there to listen to their struggles and concerns and offer them hope, compassion and understanding, as well as empower them to take control of their own health.

Q. Where do you find hope, inspiration and strength?

A. I find hope, inspiration and strength from my husband, children, my Jewish faith and the many cancer survivors that I have been blessed to know.

Q. What do you want others to know about surviving cancer?

A. I want others to know that cancer can be your best teacher. Although we often ask ourselves why it happened or if we did something to cause it, I think it is better to ask what we can learn from it.

Q. What has been the most rewarding experience in your cancer journey?

A. Working with amazing, inspirational people; helping them take charge of their health so that they can gain confidence that they will remain vibrant and health.

Q. What does SURVIVEiT’s vision, “creating a world free from the fear of cancer,” mean to you?

A. I LOVE this vision because with the right tools, we don’t need to be afraid of cancer; with the right support we can heal and live to our fullest potential. 

Q: If you had one minute to tell someone about yourself, what would you say?

A: Hi! My name is Layne von Schaumburg and in May of 2017 my family’s world was turned upside down when my mom at age 56 was diagnosed with metastatic triple negative breast cancer. This experience has impacted almost every aspect of my life, both good and bad. I currently live in Chicago with my husband Zach and our French bulldog, Otto. We frequently travel back to Cleveland, Ohio to spend time with my family. Since my mom’s diagnosis I have turned my passion for cancer and research into a fulltime career at a cancer research start-up here in Chicago. While I hate cancer with every fiber in my body it has allowed me to find passion and purpose in what I do every day, along side connecting with the most amazing patients and caregivers. 

Q: Knowing what you know today, what are the first three things you would do after being diagnosed with cancer for the first time? Why?

A: First I would encourage you to find hope. Before you can be your own advocate and seek out the best care, you need hope that a positive outcome exists. 

Next, I would say become an expert in your specific cancer type by researching all that you can get your hands on. Becoming an expert will help have a collaborative conversation with your oncologist rather than a one-sided one.

Lastly, I would say be prepared to attack cancer from every angle. By this I mean using both conventional and alternative therapies (approved by doctor) as well as healing both your body and mind. Cancer, especially in the metastatic setting is like a house fire. You cannot put it out with just one hose. 

Q: What is the best way to support someone (and their family) who has just been diagnosed with cancer?

A: Listen and follow their wishes. As much as my mom and I sometimes disagree I always trust that she knows what’s best for herself at the time.

Q: Where do you find hope, inspiration and strength?

A: Other survivors and positive stories. There are so many cancer patients out there outliving their prognosis and thriving. Connecting with those patient and learning about their cancer journey offers so much insight on how to navigate your own.

Q: What do you want others to know about surviving cancer?

A: As a caregiver I don’t have the experience of surviving cancer myself but from the outside looking in I think its important for newly diagnosed patients to know that cancer does not define them and that they can live the same active and fulfilling life prior to the diagnosis. 

Q: What has been the most rewarding experience in your cancer journey?

A: Witnessing my mom benefit from the science and research that has largely changed the cancer landscape in the last 5 years has been so rewarding. She has been able to be a resource of inspiration not only to other patients but to her doctors. She is proof that there are options beyond the standard of care thanks to the advances in clinical trails and targeted therapies.

Q: What does SURVIVEiT’s vision, “Creating a world free from the fear of cancer,” mean to you?

A: The fear and stress of a cancer diagnosis can be crippling. SURVIVEiTs vision to me takes away some of the burden of fear associated with a diagnosis and gives patients the tools and resources they need to seek out the best care and be their own advocate. I believe once fear is diminished you have unlimited power and potential.

Q: If you had one minute to tell someone about yourself, what would you say?

A: We are Ed and Sandy Russ. We have an amazing family that we love spending time with. We also enjoy exercising, fishing, and just about anything outdoors. Ed is also a hunter, and Sandy enjoys trying out new recipes. We are both retired. The best things we have done, have always been done together.

We have a strong belief that everything happens for a reason. We may not realize the reason at first, but it becomes apparent at some point. Going through this journey has shown us that although we thought we had a great plan for our retirement years, it was not the path we were meant to take. Since Ed’s diagnosis, we have learned so much about cancer, treatment options, and resources. We want to share what we have learned so that others will not have to go through the struggles of navigating through a journey that most are not prepared to take.

Q: Knowing what you know today, what are the first three things you would do after being diagnosed with cancer for the first time? Why?

A. Not be so afraid. Fear can stop you in your tracks, and for some people, they give up before their fight has started. Fear should not determine your future.

B. Get a second opinion before deciding on a specific oncologist/ treatment facility. Not all treatment facilities and oncologists are the same. 

C. Get advanced genomic testing as soon as possible. Understanding your cancer’s mutation is paramount in understanding and choosing the treatment options that are best for you. 

Q What is the best way to support someone (and their family) who has just been diagnosed with cancer?

Listen. Most people are overwhelmed when getting this type of news, and they may just need to have someone talk to. 
Suggest the patient/caregiver review the SURVIVEiT website for information, resources, and inspiring survivor stories. 

Q: Where do you find hope, inspiration and strength?

A: Our faith, our family, our friends.

Q: What do you want others to know about surviving cancer?

A: Your cancer journey will likely be the hardest thing you ever experience. Do not lose hope. You will find strength that you never knew you had, and your strength will inspire others.

Q: What has been the most rewarding experience in your cancer journey?

A: Sharing our experiences with newly diagnosed cancer patients to help them understand there are options, and resources available to help them. 

Q: What does SURVIVEiT’s vision, “Creating a world free from the fear of cancer,” mean to you?

A: Changing a person’s initial reaction to the words,you have cancer, through encouragement, education, and empowerment.

Q. If you had one minute to tell someone about yourself, what would you say?

A. I was born and raised in Brooklyn where I continue to live and work. I am a NYC public school teacher and love my job. I currently teach fifth graders who I believe may be some of the best people on the planet. I love being outside, being with friends and family, laughing, sharing stories and learning. 

Q. Knowing what you know today, what are the first three things you would do after being diagnosed with cancer for the first time? Why? 

1. Have a  “Cancer Coming Out Party” 

When I was first diagnosed, I decided to have a “Cancer Coming Out Party” and I would most definitely do that again. My husband and I texted our friends, told them the news briefly, and invited them over for champagne and cookies. I dreaded the idea of having to call people individually over an extended period of time, so having a big gathering and framing it in a positive way was what made me feel most comfortable. 

2. Avoid too much internet research 

The internet is scary, misleading and overwhelming. If you can keep yourself from reading too much after your initial diagnosis, you may be able to save yourself from unnecessary stress. 

3. Get a therapist (if you don’t already have one) 

I believe that therapy is valuable even in the best of times, so it is essential in the difficult times. I found a therapist who had experience with cancer who really helped me sort through my feelings of frustration, anger, sadness and confusion. Your friends and family can help you sort through a lot of these feelings, but having an impartial professional listen to you is an incredible resource.

Q. What is the best way to support someone (and their family) who has just been diagnosed with cancer?

A. Listen to them. Validate them. Feed them. (Like, literally, with food.) Bring them or send them fun little gifts. Try not to compare your experience with theirs, unless they are truly comparable experiences. (I can’t tell you the number of women who compared my experience of chemo to their pregnancies. Please don’t do that.) Don’t unload your worries on them--they are carrying enough worry on their own. I found this articleon “Ring Theory” to be an extremely helpful guide for what to do and say when someone in your life is ill. 

Q. Where do you find hope, inspiration and strength? 

A. I have found hope, inspiration and strength in other survivors. Since my diagnosis, I have connected with many other people who have or have had cancer. It has been so powerful to speak with people who really understand what you are going through- the fear, the frustration, the physical discomfort, etc. I have also found hope, inspiration and strength in my students. Their love and support was palpable and motivating. While they could not fully understand what I was going through, their well-wishes and small acts of kindness were so fortifying. 

Q. What do you want others to know about surviving cancer?

A.  Surviving is wonderful. Surviving is a relief. Surviving is exactly what you and your loved ones were hoping for. But it is also difficult, and that is ok. When I finished treatment and was told that it had been successful, I expected to feel absolute joy and relief. The truth is I did not. I still felt fearful. What if it comes back? What if there is something there that they just can’t see? How can I trust my body, knowing that my body has made mistakes in the past? Now that I am two years out from treatment, I feel more confident that I am ok, but those feelings still nag and that is just part of my life now, my “new normal”. I deal with that feeling by continuing therapy, continuing to speak openly with friends and family about my fears and by dutifully going to my appointments. 

Q. What has been the most rewarding experience in your cancer journey?

A. I always feel a little resentful when people focus on the way that cancer has enriched their lives. It’s misleading. It plays into this narrative that we all are better for having had cancer. That’s not true. I would have much preferred to not have cancer at all, thank you very much. 

But I do think that cancer has given me a new understanding of struggle and has helped me to have more compassion and empathy for others, and has fired my fight for equity. Before having cancer, I had never dealt with illness personally or within my immediate family. I also had never struggled to navigate opaque and predatory systems. I had never had to advocate for myself like I did when I was a cancer patient. Cancer helped me find my voice, it helped me to recognize my privilege and it inspired me to stand with the hundreds of millions of people in this country who fight daily for quality affordable healthcare. 

Q. What does SURVIVEiT’s vision, “creating a world free from the fear of cancer,” mean to you?

A. To me, this means that a combination of community and knowledge can help drive away fear. Having people to support you, access to clear and vetted information, access to resources and quality care can make a very scary thing a little less scary. By providing the necessary information and resources, SURVIVEiT removes some of the doubt and anxiety around treatment, and helps people focus on getting well. 

Q. If you had one minute to tell someone about yourself, what would you say?

A. I LOVE people!  And I love working on projects with people that make the world a better place!  I love animals, I’m a vegan, and I’m a minimalist.

Q. Knowing what you know today, what are the first three things you would do after being diagnosed with cancer for the first time? Why? 

A. LIVE the life you love!  Build things to make the world a better place.  Find the BEST people you can in the world and keep them close to you!

Q. What is the best way to support someone (and their family) who has just been diagnosed with cancer?

A. BE PRESENT.  That’s #1 and most important.

Q. Where do you find hope, inspiration and strength? 

A. My mom, my brother, my friends and people who care about me.  Couldn’t have made it without them!

Q. What do you want others to know about surviving cancer?

A. That they are not alone! Survivors and good people are here to share, help and support them!  TOGETHER we are all stronger!

Q. What has been the most rewarding experience in your cancer journey?

A. The ability to share my story, and partner with others, to help the newly diagnosed!

Q. What does SURVIVEiT’s vision, “creating a world free from the fear of cancer,” mean to you?

A. It means we all work together to help the newly diagnosed keep a HEALTHY MIND and SPIRIT and find a way to win their cancer fight!!!

Q. If you had one minute to tell someone about yourself, what would you say?

A. I am just a guy who loves the basics of life: putting one foot in front of the other, hanging out with people I love, and daring to dream.

Q. Knowing what you know today, what are the first three things you would do after being diagnosed with cancer for the first time? Why?

A. 1. Figure out what you’re living for and make that the reason to avoid dying since the dying part will get there anyway someday.

2. Even as overwhelming as cancer can be, don’t let yourself be completely self-absorbed. Continue to care for the people who care about you because it’s overwhelming for them, too.

3. Realize that even with a complicated diagnosis or treatment, the simplicity in wanting to live with the right team will make it easier.

Q. What is the best way to support someone (and their family) who has just been diagnosed with cancer?

A. There will be financial overwhelming, overwhelming feelings both physical and emotional. There were people who helped with those and they were life-savers in their own ways. For me, the best gifts were the ones of presence. The people who could make the phone call or the drive over.

Q. Where do you find hope, inspiration and strength?

A. I don’t have to look far. I have a 7 year old daughter who it takes all the energy I have to just try to keep up with her. I also know people who have had to relearn to walk or talk, and others who run marathons or have done Ironmans; people whose relationships have collapsed and those who find a way to love others deeper. It’s not so much about bouncing back as I get inspiration from those who bounce forward.

Q. What do you want others to know about surviving cancer?

A. If you weren’t already doing some things right, be grateful you have a second chance. If you were, take the chance to do it better.

Q. What has been the most rewarding experience in your cancer journey?

A. I’ve long joked that if brain cancer makes my daughter into a neurosurgeon it’s totally worth it. I think it’s that it woke me up to an age old adage: work on the relationships you want to keep and do not take them for granted. I’ve gotten to do many more things with friends and family.

Q. What does SURVIVEiT’s vision, “creating a world free from the fear of cancer,” mean to you?

A. It means that all of life’s problems, and certainly the chronic ones a cancer diagnosis can cause, can be utilized to live by hope and not by fear. 

Q. If you had one minute to tell someone about yourself, what would you say?

A. I am 44, married with 4 kids.  I may have stage IV lung cancer, but that is only part of my identity - it does not define me!  I am thankful for each day and try to live by what I know today.

Q. Knowing what you know today, what are the first three things you would do after being diagnosed with cancer for the first time? Why?

A. The most important thing to me was finding the right doctor to treat me; someone who treated the patient, not the disease. I always kept copious notes and all records. I also was able to communicate my feelings and needs with my husband, family and friends, but I had been on both sides of cancer and in so many way it's much harder to be the loved one than the patient so I made sure that I gave them time to communicate their feelings and needs. Also, when people asked what they could do for me, I told them to help my husband and kids, who take the brunt of it all.

Q. What is the best way to support someone (and their family) who has just been diagnosed with cancer?

A. Listen first. Every patient is different so it’s important to figure out what that individual patient’s, and family’s, needs are; what they want to know/hear and how involved they want to be in their treatment.  Try not to give medical advice, rather simply advise the patient/family and provide appropriate information and resources.  Be hopeful!

Q. Where do you find hope, inspiration and strength?

A. I find hope, inspiration, and strength in my family. I find it in my survivor family and I find it in knowing that research is moving and there are new discoveries all the time.

Q. What do you want others to know about surviving cancer?

You have no control over cancer physically - in your body, but you do control the mental game.  It takes time, and a lot of work, but once you control that, and cancer has to fit into YOUR life, living becomes easier.

Q. What has been the most rewarding experience in your cancer journey?

A. My work with LUNGevity since 2001 gave me the honor of being part of the growth and success of the first organization in the country dedicated exclusively to lung cancer. Also, supporting other patients and knowing that makes a difference in their journey.

Q. What does SURVIVEiT’s vision, “creating a world free from the fear of cancer,” mean to you?

A. It means that no one has to go through this journey alone.  It means that every patient has a readily accessible advocate.  Without fear, patients have more control.

Q. If you had one minute to tell someone about yourself, what would you say?

A. I love life and people, and live every day to the fullest. I believe in helping others, and that a sense of humor is key.  

Q. Knowing what you know today, what are the first three things you would do after being diagnosed with cancer for the first time? Why?

A. Actually, what I did: cry, pray and reach out to others. It is a normal reaction. You must absorb the shock, grieve the loss of your former life, and move on to the new. Reaching out to others to learn as much as possible about lung cancer/your situation - and also simply for moral support - is critical. Knowledge is key to decision-making, and knowing you're not alone and carrying the burden single-handedly is paramount. 

Q. What is the best way to support someone (and their family) who has just been diagnosed with cancer?

A. Ask gentle, open questions - let them be the guide as to how much they want to proffer. Based on their feedback, you can offer resources, connections, or advice. Initially, just be there and listen and hug. Let them know your situation so they realize they're not alone. That is huge. Telling people I am Stage IV when I look and live a normal life typically gives them tremendous hope. 

Q. Where do you find hope, inspiration and strength?

A. My faith, my church, my children, my family and friends and fellow lung cancer survivors.

Q. What do you want others to know about surviving cancer?

A.  It is a journey. A unique, customized journey. There will be ups and downs, good chapters and bad. But you can do it! And there are silver linings: a new appreciation of life and family, not sweating the small stuff, a new joy in simple things. Life can become much richer. And you will find you may have new missions in life. I like to say I've always lived my life in color. But now I live in technicolor.

Q. What has been the most rewarding experience in your cancer journey?

A. Living more richly. No longer stressing about "stuff" that used to mean more than it should. Being free to love, empathize and help others in ways I never thought possible.  

Q. What does SURVIVEiT’s vision, “creating a world free from the fear of cancer,” mean to you?

A. To me it means eliminating cancer as a death sentence. Whether that means through a cure, or through treatments that afford a normal lifestyle, and normal life expectancy, or through a vaccine/lifestyle that prevents it in the first place. Tall order, but fear comes from the prospect of suffering and dying, so we need to get rid of both. 

Q. If you had one minute to tell someone about yourself, what would you say?

A. I am a father, husband, entrepreneur, and lung cancer survivor who is passionate about physical activities and is trying to remain healthy and focused on life's priorities that were rearranged after I was diagnosed with cancer. My desire is to spend more quality time with the people I love and give back to the community.

Q. Knowing what you know today, what are the first three things you would do after being diagnosed with cancer for the first time? Why?

A. I was fortunate to have a "professional cancer quarterback" at my side since day one. My brother in law Dr. Alexander Krupnick lung cancer researcher at Washington University. This enabled me to navigate and make good decisions from very early on that had a major positive impact on my treatment, recovery, and positive state of mind. If possible, that would be what I'd recommend to anyone.

Q. What is the best way to support someone (and their family) who has just been diagnosed with cancer?

A. Listen. Help with information when asked for. Answering questions specifically while avoiding telling long horror/bravery stories. Point them to SURVIVEiT®.

Q. Where do you find hope, inspiration and strength?

A. Looking at my wife and kids, I want to be here for them. I also find strength from within.

Q. What do you want others to know about surviving cancer?

A. Stay in the moment, if you think about the bad things that can happen in the future you WILL BE miserable. Be knowledgeable but avoid data oversaturation. There is a lot of crap you will receive from well wishing people, the internet, and more - focus only on the reliable sources of information.

Q. What has been the most rewarding experience in your cancer journey?

A. Realizing that this might be an opportunity for my family and I to rethink the next 50 years. Discovering that my way of handling this disease and what I do at supportersize has a positive impact on people. I consider that a gift.

Q. What does SURVIVEiT’s vision, “creating a world free from the fear of cancer” mean to you?

A. In my case I wouldn't know that I have cancer unless I see my Dr. (scans, tests, etc.). I really don't have any physical symptoms. What's left for me and my family is the awareness that I'm a cancer patient, which means fear of the unknown and of what can happen. For us, uncertainty is scary, knowledge gives strength, and I can relate 100% to the need of SURVIVEiT®'s mission.

Q: If you had one minute to tell someone about yourself, what would you say?
A: I am a person who is passionate about life. I am a VERY proud grandfather, but most importantly, I am a child of God.

Q: What does living a purpose driven life mean to you?
A: I am not here by chance. I am here for a higher calling. I want to fulfill my purpose in life in a profound way. This drives me.

Q: What is the best way to support someone in their family who has just been diagnosed with cancer?
A: Prayer and empathy. Be a good listener.

Q: Where do you find hope, inspiration and strength?
A: My hope is in Jesus Christ. My inspiration comes from my incredible wife and my godly friends. My strength comes from God.

Q: What do you want others to know about living a life guided by faith?
A: Living the life guided by faith often eliminates the quandary of difficult decision making. Living by faith and obedience pretty much answers all my questions. My purpose, my joy, and my general outlook on life is the by-product of my faith.

Q: What has been the most rewarding experience in your life journey?
A: I have really enjoyed standing in front of an audience and sharing my faith and declaring God‘s truth.

Q: What does SURVIVEiT's vision, “Creating a world free from the fear of cancer”, mean to you?
A: In the faith community, we have all heard the saying, “let go and let God”. I think there’s a misconception that once we give our problems over to God, we are just supposed forget they exist and magically they go away. To me, giving everything to God means that no matter my circumstances, I continue my walk with God in faith. SURVIVEiT’s vision allows me to understand that using my faith as the foundation for any treatments can allow me to do so without fear. He (God) is our refuge and strength. A strong faith can alleviate fear. You see, people of faith are going to be victorious no matter what. Embracing that truth is incredibly powerful!

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