Tacoma Adolescent & Young Adult (AYA) Oncology Council
More than 70,000 adolescents and young adults (AYAs) aged 15-39 are diagnosed with cancer each year in the United States, and cancer is the leading cause of disease-related death among AYAs. Little progress has been made to improve cancer care for young people and we want to Change Cancer Care.
Help Us Change Cancer Care!
If you are a cancer survivor and were diagnosed when you were between the ages of 15 and 39, we need your input to make cancer care for teens and young adults better. Take our survey to tell us about yourself and your cancer experience (must be at least 18 to participate).
In 2016, MultiCare was awarded a grant from the Patient-Centered Outcome Research Institute (PCORI) to develop an Adolescent & Young Adult Oncology Council (AYAOC). The AYAOC is composed of stakeholders including Investigator Rebecca Johnson, MD, Medical Director of the AYA Oncology program at Mary Bridge Children's Hospital & Health Network; two lead patient representatives, Rebecca Jacobsen and Bernadette Ray, who are also survivors of AYA cancer; six other AYA cancer patients and survivors; and a spouse, a sibling and two parents of AYA cancer patients from greater Tacoma.
Other partners dedicated to the mission of changing cancer care include CanTeen, a highly successful AYA cancer engagement program in Australia, and Stupid Cancer, a well-established young adult cancer support organization.
Together, our goal is to build a specialized cancer treatment program for you and people just like you — adolesents and young adults across the nation and worldwide.
But to do this, we need your help. By taking our survey, and telling us about your cancer experience, you'll be providing us valuable input that we can use to make cancer care programs for AYA populations better.
Meet the Leaders of the AYAOC
As leaders of the AYAOC, we stand united to change cancer care for young adults across the United States. As cancer survivors ourselves, we have a deep-rooted passion to improve care for those who come after us. We thank you in advance for taking our survey and sharing your thoughts with us.
- Rebecca Johnson, MD
Rebecca "Becky" Johnson, MD, is the Medical Director of the Adolescent and Young Adult Cancer Program at Mary Bridge Children's Hospital/MultiCare Health System. It is sponsored by the Patient Centered Outcomes Research Institute (PCORI), “Establishing a Patient Centered and Community Bases Adolescent and Young Adult Oncology Council” contract #2909. CanTeen, Stupid Cancer and Teen Cancer America are collaborating on this project. It is approved by the MultiCare Heath System Institutional Review Board. Dr. Johnson provides consultation and care to pediatric oncology and hematology patients, including children with hemophilia and sickle cell disease.
- Becca Jacobsen
In August of 2015, I received a flyer from Mary Bridge Children’s Hospital’s Outpatient Oncology clinic. The flyer said they were going to be having an all-expenses paid weekend kayaking trip to Hood Canal and I was invited! The organization sponsoring it was First Descents, a cancer non-profit that offers outdoor adventures and opportunities to connect with other survivors. It was a little nerve-wracking to show up at Mary Bridge Children's a few weeks later with my bags packed and my husband and baby at home. I didn’t realize it would change my life.
That was the day I met Dr. Becky Johnson. Becky was passionate in her desire to help young adults with cancer and she was genuinely interested in us and our stories. That was also the day I met Dori. Dori was everything. At the time she was “cancer free” with her fancy Mohawk, her tattoos and her zeal for life. I also met four other survivors and made a discovery. When young adult survivors are put in a room together, they instantly bond and a deep connection is made. You are suddenly no longer alone. When we got back from our weekend together, Becky asked me if I would be a Lead Patient on a grant that she was working on for the Patient Centered Outcomes Research Institute. The grant required a panel of young adult survivors and fighters, as well as loved ones and family members. She asked me if I would help her. The first step was recruiting the other needed members of the committee, which was a wonderful role I got to play.
It has now been over two years. In that time, the 16 of us have met monthly with the goal to change what cancer care looks like for AYAs in community hospitals and clinics throughout the country. Some in the group are actively in treatment and others in remission. Dori remained an active member of our group until her passing in May 2017. We continue to value her words and bring her perspective to our meetings. We know that our time on Earth is not guaranteed to any of us and we want to use it to make the path better for those that come after us.
- Becca Jacobsen
- Bernadette Ray
BP and I have been friends since our early 20s. We were introduced through our dear, mutual friend, Kim. We saw one another through grad school. She met her husband at my then annual “Swanky Holiday Cheer” party. She helped me get through cancer. When she called and asked if I might be interested in working with an oncology counsel specifically designed for adolescents and young adults I could not say no.
I was definitely interested in the work. I was excited to work on a project with BP, as our professional paths have not often crossed. I respect her ability and was excited to sit in boardrooms together for once. Little did I know that she would walk this journey through cancer as well. What started as a grant application has grown into an unexplainable sisterhood. Now, more than ever, I look forward to our monthly meetings, the meeting when Bethann is far enough through treatment to return to this new family of survivors we share — fighters, exist-ers, live-rs.
I have always been single. There have only been short periods of time where I was coupled with a man. At age 34, I still had hope that I might be a mother. I discovered that there were large fibroids in my uterus and that I must have them removed if I had any hopes of having children someday. When the fibroids were removed, my doctor found unidentified cells along with the fibroids. She knew right away that what she saw was cancer. But to be sure, she ordered a series of tests. She called me soon after and said that I needed to come back to the office soon as possible. I never thought I would be thankful for fibroids, but they are what helped to find what turned out to be endometrial cancer throughout my uterus, outside of the uterus, and throughout the abdominal wall. I had no symptoms. I had no idea that I had cancer.
Almost immediately I was introduced to Bahman Saffari. MD, PhD, a gynecological oncologist. He assured me that I had nothing to worry about and I would live to grow old. However, surgery was scheduled for just two weeks away and I had one week to determine whether or not I would freeze eggs or take any steps toward having children that might look like me. I met with another doctor about my age who gave me clear statistics as to the likelihood of my having children with a carrier someday. Since a full hysterectomy was scheduled, not only would I need to freeze eggs, but also to find someone to carry my babies.
Insurance did not cover the costs. She made my decision quite easy. The hysterectomy was scheduled. I went through 18 weeks of chemotherapy and six weeks of radiation.
The year I spent in treatment was one of the happiest years of my life. It was crystal clear to me who loved me and my importance to those folks. It was a comforting, calming feeling that made me very happy. I had every confidence that Dr. Saffari was correct. I will grow old. At the same time, things were going well professionally, and I was still able to work. I was preparing for a promotion and felt confident in my ability to move forward despite my treatments. My support network rallied around me and help me to get that job.
Now, I am so happy that I had fibroids. I have seven beautiful nieces and nephews who are almost like my own children. It may be even better to have them when I want to! How lucky I am.
- Bernadette Ray
- Kristen Bishop
As the AYA Specialist and part of the health care team, Kristen focuses on the psychosocial needs of patients and their families. Coping with an illness is difficult at any age, but Kristen recognizes that there are unique challenges within this age range that medical providers may not understand.
AYAs want to be seen and understood for where they are at in life. Receiving treatment and trying to fit into the mold of a pediatric or geriatric unit is not beneficial to individuals focused on college, careers and families of their own. Kristen supports the council and AYA patients through facilitating conversations and acting as a liaison between the patient and medical team, digging into deeper questions, validating experiences, and advocating for the appropriate care of these individuals.
Kristen’s “why” is making meaningful change and supporting the AYAOC in doing just that.
CanTeen - CanTeen was established by a group of young cancer patients in 1985 and supports young people with cancer through counseling, peer support programs and research.
Stupid Cancer - Stupid Cancer was founded in 2007 and is a non-profit organization that comprehensively addresses young adult cancer through advocacy, research, support, outreach, awareness, mobile health and social media
Teen Cancer America - Teen Cancer America is a charity devoted to transforming the lives of teenagers and young adults with cancer.