In My Second TCF Summit, I Again Was Amazed By The Takeaways From This Conference
One of the best health conferences I ever attended was the Testicular Cancer Foundation (TCF) Summit in Austin, Texas back in 2019. In my reflection post on that experience, I mentioned how strongly I wished to return the following year. However, COVID gonna COVID and there was no conference in 2020.
In 2021, the TCF Summit returned and this time it was in Vegas. Since I have been fully vaccinated and would be following all safety protocols, I decided to go. It was great to see many of my old Uniballers and meet some new half-sacked (or empty sacked) brothers. Early on, I knew I was with kindred spirits. New attendee Kris Acevedo shared one of his first questions on being told that his testicle would be removed: “How do we put it back in?”
After introductory remarks, we jumped right in with a presentation from Dr. Zachary Klaassen.
Dr. Klaassen is a Urologic Oncologist at the Medical College of Georgia at Augusta University. He shared many thought-provoking thoughts and ideas. He broke his talk into three parts: his experiences with testicular cancer patients and survivors, the importance of advocacy, and the mental health impacts of a diagnosis and survivorship.
Right off the bat, he told us that he gives his cell phone number and email address to each of his newly diagnosed patients. He also sets up meetings with his entire team: the nurse navigator, nurse practitioner, and a psycho-oncologist. Finally, he makes sure they have a surveillance protocol calendar that clearly lays out all scans, bloodwork, and visits for the next ten years after diagnosis. This helps to ensure the patient is well equipped to face this journey. I have always said my oncologist, Dr. Maurer, is the gold standard for care, but he may be joined by Dr. Klaassen.
He defined advocacy as “an individual who provides direct and personalized services to a patient and their family as they navigate the healthcare system.”
Essentially, Dr. Klaasen said that all of us in the room were “the best advocates for awareness” by sharing our stories. He said testicular cancer advocates are so important for a number of reasons:
- Patients have the most to gain and to lose.
- Most men are in the prime of their lives at diagnosis and much of treatment can disrupt this
- There is excellent survivability with this but long lasting physical and mental health impacts
- There may not be other advocates in a newly diagnosed patients life
His final message revolved around mental health. To the surprise of no one in the room, various studies have confirmed that testicular cancer survivors are more likely to experience stress and anxiety in the years following treatment than the general population. However, it also has been found that testicular cancer survivors are more likely to utilize mental health support services than survivors of other cancers. Another interesting fact was that testicular cancer survivors actually experience less anxiety later in life than our non-cancer peers, which he chalks up to having built better coping mechanisms earlier in life than others.
He left us with a final bit of advice: “Seek help if you need it.”
The “Just For Men” breakout group was again filled with powerful moments.
What happens in Vegas, stays in Vegas. We also don’t talk about what happens in the “Just For Men” breakout group (like a less violent version of Fight Club, although Bob from the movie, played by Meatloaf, did have testicular cancer).
But I digress.
This group is a sacred time for all testicular cancer patients and survivors to come together to just talk. This is one experience I have treasured since 2019 and this year’s was just as great. Again, I won’t be sharing any of the topics, but if you are a male facing cancer, it is so important to find a community of ‘cancery’ men who know what’s what. Trevor Maxwell has also done an incredible job of this with his Man Up To Cancer initiative and I look forward to the day where I get to meet my Wolfpack in person.
As with the 2019 TCF Summit, one of my highlights was the Dear World presentation.
Robert Fogarty of Dear World made another appearance this year. The Dear World project involves photography, with words, sentences, quotes, or more written on the person’s skin in black marker. Robert has a process to guide us through picking our phrase to write. In 2019, I learned to trust his process. I originally planned to write “One day changed my life forever,” but it changed to “I hobbled out, using my cane, lost in my thoughts.” I fully relied on the method today and ended up with the following:
As I mentioned a few months ago, my life hit rock bottom over the past year. However, through realizing I had lost everything and needed to make changes, I began growing my faith and turned my life around. Perhaps I will write more about the latter part of this revelation, but that’s the nutshell of how I came up with the phrase.
I had a chance to share this story with the group up on stage. I am not ashamed to say I cried in front of everyone. It was super cathartic to release this and share my story.
Beyond this, many other guys shared their stories. From laughter to tears to life-changing proclamations, everyone had a poignant moment to talk about. It’s only by sharing that we can move forward.
There was a clear and defined focus on mental health.
Dr. Klaassen wasn’t the only one who spoke on mental health at the TCF Summit. Many of the speakers and individuals touched on the topic of mental health before, during, and after a cancer experience. The bottom line was that we all go through some major stuff in the turmoil of cancer and it doesn’t just end when treatment is finished. However, many guys are initially reluctant to discuss this. This makes it harder for the individual man to feel better and also perpetuates the idea that men can’t talk about their mental health.
Personally, this tracks for me. It took me nearly a year to admit that I was facing mental health struggles post-chemo. Once I did, it helped me start on an upswing (which has ebbed and flowed throughout the years). However, talking about it has helped me break this cycle. I’m now committed to sharing openly and honestly. Furthermore, I am in awe of so many men opening up and sharing their challenges so openly this week.
Steve Gavers, founder of Gavers Community Cancer Foundation, fellow survivor, and Band of Ballers alumnus, summed it up best: “For us to help you, you need to talk to us.”
Thank you, thank you, a million times, thank you to all involved.
There were various other speakers (including myself – I had the opportunity to speak about turning your story into advocacy) and they all did an exceptional job (or in my case, a mediocre one, at best). Kudos to them and all who shared.
The TCF Summit truly is an event I want to make a strong effort to attend each and every year. To the planning team, all the speakers, the patients and survivors, their caregivers, and all who helped make this a possibility, you have my utmost appreciation and thanks.
We’ve truly built a special place here and you can say that we’re all… a little nuts.
A self exam is how most cases of testicular cancer are detected early. Click the image for video directions or click here for a larger version
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