Episode 20: Navigating Uncertainty, Making Decisions in the Absence of Data, Advocating & Caregiving with Jane Gutkovich of the EHE Foundation
Our guest is Jane Gutkovich who was thrust into the land of patient advocacy and navigation after her son was diagnosed with Epithelioid Hemangioendothelioma (EHE), a rare type of sarcoma cancer. Given the rare nature of EHE and after four different treatment plans from the four of the top cancer centers in the US, Jane had to turn to other patients to help determine her son’s path. Jane talks with Samira about the decision process for rare cancer patients with small amounts of available data, the role of the family caregiver, the power of patient advocacy and the evolution of patient communities.
What we discussed
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Power of Patient Organizations
The power of patient organizing and advocacy. The evolution of patient communities from small to larger and the opportunities and challenges that presents.
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Decision Making for Rare Cancers
Decision making for rare cancers with small amounts of data – relying on some combo of trust, faith and instinct
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Role of caregivers
The role of the family care team to support patients.
About our guest
Jane Gutkovich is one of the founding members of the EHE Foundation, and has served on the Board of Directors. Her responsibilities as Vice President of the Foundation included: furthering the foundation’s impact by securing strategic partnerships with relevant organizations, institutions, and individuals; raising funds to support key initiatives; and growing EHE awareness in the medical and research communities. She maintains a deep engagement with the EHE community and active member of our EHE Facebook support group, as well as through personal communications and meetings.
Watch the video of our episode: Navigating Uncertainty, Making Decisions in the Absence of Data, Advocating & Caregiving with Jane Gutkovich of the EHE Foundation
Key Moments
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4 minutes 58 seconds
I remember driving in a car to the fourth doctor, and I look at my husband and I said, you want to bet that because there’s only one combination left that this guy will say yes to surgery and no chemo. Sure enough, that's what happened. The best sarcoma specialists in the country gave us totally opposite recommendations. What do you do? Well, you learn and you have to make your own decision.
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8 minutes 26 seconds
I got in touch with some patients. And we knew that we had to do something. The only thing we could do was organize a very tight community. One of my friends had this brilliant idea to launch an EHE Facebook group. It was launched in September of 2013 and was 7 or eight of us on in this group in the beginning. And I remember checking every day five times a day to see if anyone else joined. And every new person who joined was like, “Yes, we have another person!” And when we had 20 patients in the group, I thought, “We're not rare!” And by the way, today we have more than 2400 members in our EHE Facebook group from almost 80 different countries.
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22 minutes 27 seconds
We were all in it, me and my husband and my older son. I think he saw that there was a team to cover him. We were not always on the same page. Don't get me wrong, there were fights. But I think my son kind of decided that he cannot do better than I will do, than we will do, than this team will do. He took the position of: I'll trust what you're saying, but it has to make sense to me. He was never like, “okay, whatever you say.” I had to present him with my rationale. But that's the kind of relationship that we developed after he was diagnosed.
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