In June, mesothelioma warrior Bill Ziegler represented the mesothelioma community as a Survivor Advocate at the 7th Biennial Cancer Survivorship Research Conference: Advancing Survivorship Care through Multilevel Collaboration after being nominated by the Meso Foundation. He was one of twenty survivors accepted out of 100 applications. Survivor Advocates attended the conference to participate in the conversation about the latest advances in survivorship care and how to improve the quality of life for cancer survivors. He wanted to share what he learned with the meso community:
Greetings Meso Community!
A little over a month ago I attended a survivorship conference in Atlanta. It has taken me a while to formulate my thoughts on the overall experience and information I received during the conference. There were over 500 people in attendance at the conference—20 of whom were survivor advocates. The advocates represented different cancer support organizations across the US. On the first day, there were sessions that placed survivor advocates at the tables of researchers. Every 20 minutes you would switch tables and meet and learn something new. Every researcher and advocate brought something uniquely different to the table.
I did attend a few breakout sessions. The sessions I attended ranged from Adolescent and Young Adult (AYA) cancer survivorship to financial impact of a cancer diagnosis. These were great sessions that provided a lot of relevant information on how much more money cancer patients will spend on healthcare over time to social stigma of a cancer diagnosis within a social group. Without a doubt, there was a lot of information presented. But the core reason I wanted to attend the conference was because of the specific nature of the challenges that a diagnosis of mesothelioma presents to patients.
I wanted to understand how, as patients, we can get the best treatment possible, and then continue to be followed over time from cancer care and then transition to primary care. It was clear that this gap in care was the biggest elephant in the room—and identified repeatedly by a multitude of researchers. For a lot of mesothelioma patients, as well as myself, this diagnosis of mesothelioma means that you will have to travel to a specific treatment center and have a plan tailored to your own personal needs. Whether it is to have surgery, chemo, radiation, or trials, a plan is usually made at one of a handful of treatment centers across the US. After treatment, which is usually hundreds of miles or hours away, patients are sent back home to recover and be followed once every few months back at the specialists office. Any non-cancer treatment follow up will usually be done with your primary care physician—and it is rare that they have all of your records from your other healthcare providers unless you specifically provide them to your primary care physician. It is this disconnect that so many of our community members have expressed concern with, as well as myself.
I often reflect on my own adventure and ask myself how I’ve been successful. I’ve done well because I try to have a resource for everything. It has become clear to me that patients who have the right resources win. Whether it be a mental support resource, a doctor resource, a travel resource, or a cancer “best practice” resource, I can always find what I need.
Patient resource management is critical for their success. At the conference, there was a clear trend towards “nurse navigators.” Nurse navigators help patients find health resources, and guide patients through treatment options. Nurse navigators are popping up in health organizations across the country to assist patients and providers becoming more aligned. It’s a good thing for survivorship, and while it’s something that is growing, not everyone has a navigator and there are still a lot of gaps in total care for cancer patients. I was proud to know that the Meso Foundation has been at the forefront of this trend for nearly a decade, providing medical consultations and support, and helping mesothelioma patients, through Mary Hesdorffer, Nurse Practitioner.
I’ve thought a lot about how each patient can manage resources effectively and be organized in keeping those resources and in the way they receive care. I told this to another advocate and he showed me a portable handbook that he brought with him. This handbook was standardized for patients, caregivers, and doctors. It kept all vital information so resources could be available and easily shared. I thought it was great, and extremely helpful! I’m going to get a couple copies of the book because I think it would be beneficial for our patients to have. It will provide a standard handbook for patient resource management. So, I’m going to talk with Mary on how we can develop something that can be a “patient resource management tool.”
I am extremely happy that we, as mesothelioma patients, have a great cancer community facilitated by the Meso Foundation that allows us to connect and learn from one another. It is a GREAT resource and wonderful tool! By attending the conference, I have also learned that there are many different components of survivorship, and that it means something different to everyone. I would also like to thank everyone in the community for allowing me to participate and be an advocate for our mesothelioma community—attending the conference was just more proof that we have some of the best people and resources available.