My last post was all about how talking about cancer can be awkward for those who aren’t experiencing it personally, but talking about testicular health as a survivor can be just as hard. I've also shared about some excuses guys may use to avoid doing a self-exam regularly. The topic of testicles can be considered impolite, even if it’s coming from a place of education. One of the primary goals of ABSOT is to get these “private” conversations out in the open, but that’s easier said than done. So to help, a la Barney Stinson’s Playbook from How I Met Your Mother, I’ve crafted various ways to bring up self-checks and testicles into everyday dialogue, based on some real life experiences.
42 years ago today I heard those fateful words... "it's cancer"... I went on to also hear my doctor tell me he knew of ONE patient with my pathology that LIVED... I was told I had a less than 10% chance of survival... and yet here I am over 4 decades later!! In a couple months we will travel to Denver to participate in the first ever Testicular Cancer Summit and will finally get to meet many of our brother and sister survivors!
I am an urologist at Johns Hopkins in Baltimore, Maryland and a passionate advocate for our testicular cancer patients. I am a member of the National Comprehensive Cancer Network Guidelines Committee for Testicular Cancer and considered among the experts in robotic and open retroperitoneal lymph node dissection. There is no cancer like testicular cancer, it affects young men and because of the high cure rate, can have lasting effects for decades after successful treatment. For those reasons and more, there is no patient population like testicular cancer survivors – and there is no more rewarding group for whom to care.
Jason is looking forward to the Testicular Cancer Summit because it is a great way for all members of the Testicular Cancer community to come together and interact. He will be able to share his story with others, but also learn from other Testicular Cancer survivors as well! There will be survivors from all over the world and many Testicular Cancer foundations, as well as world renowned doctors who specialize in the treatment of Testicular Cancer. With all these elements and this being the first event of its kind anywhere in the world, the event is sure to be a major success! Jason will be speaking about his cancer journey as a student in high school and the impact it had on his life. He will also be discussing what young men can do to be more active about Testicular Cancer awareness in their own communities.
The Jaimeson Jones Memorial Scholarship has two missions: Providing scholarships to families who have experienced childhood cancer, and preaching early detection of TC by teaching its signs and symptoms. JJMS is dedicated to changing the culture of silence about men’s health and heightening people’s awareness about testicular cancer, and to do that, we get them where they live: with humor. We are beyond honored and thrilled to be attending the first-ever Testicular Cancer Summit.
I'm a fighter, and a survivor, just like all of you. I've become a recognized writer on the topic of young adult cancer, with blogs that have reached hundred of thousands if not millions across the world on multiple platforms. By pure chance and amazing synchronicity with another writer and survivor wanting to do the same thing, I'm the Co-Founder and Co-Chair of this Testicular Cancer Summit as one of those individual survivors. One of my nearest and dearest roles, however, is as a Director at the Testicular Cancer Awareness Foundation, where I've been a Blogger since 2014. On behalf of TCAF CEO, Kim Jones, I'm excited to share with you the story and mission of the Testicular Cancer Awareness Foundation.
Although the Testicular Cancer Awareness Foundation is based in Grand Junction, CO, we are a nationwide non-profit organization, and #TCAFEast in particular has become a veritable force for testicular cancer awareness in the Mid-Atlantic region. TCAF Board members Dr. Phil Pierorazio, Steve Pake, Jason Greenspan, and several other TCAF volunteers all reside within the MD/VA/DC area, and were able to connect at the Baltimore Orioles game on July 18th for a night of raising awareness.
I had a great time in the Testicular Cancer Awareness Foundation tent at Vans Warped Tour 2017 in Columbia, MD last weekend with fellow survivor and TCAF Board Member, Jason Greenspan. I’ve been doing quite a bit for TCAF over the years, but booth volunteer hasn’t been one of them, so there’s always a first. It was a blast, and I very much enjoyed the mission of educating the predominantly young adult summer concert goers in-person about the disease that has changed my entire life.
I am excited to have the opportunity to be a guest speaker at the Testicular Cancer Summit but more importantly, for the opportunity to meet so many other survivors and caregivers face to face and learn of your experiences. Whether we are a survivor, caregiver or healthcare professional we have each traveled a unique path to where we are today. I look forward to being able to share ways that we can continue to move forward and get back to living life. After our experiences, life may never be the same as it was before we were affected, but I hope that we can all find ways to embrace the “new normal.” I look forward to seeing you all in Denver.
Fantesticle news - Guest speaker at the Testicular Cancer Summit! Being a cancer survivor we all of have story to tell. I like to focus on something “different”. I’m looking forward to share the challenges of a testicular cancer mission in South Africa where besides cancer and its horrible side-effects people have to deal with: no or limited access to clinics and doctors, language barriers, witchcraft, cultural taboos, stigma, rejection, lack of funds, lack of medication and lack of knowledge to name but a few.
Cancer. The bastard disease of humankind that kills without hesitation, without prejudice. It is one of the most dreaded words in the medical world, especially if you are a patient. Cancer will turn a world upside down, backwards, and inside out. And more than likely, cancer will be what kills me in the end. That’s a depressing thought to have I know. It’s one of those things that is just ingrained in my mind, and something that contributes to daily anxiety. Let me break it down for you.
It’s coming this Fall 2017! Mark your calendars for October 13-15th in Denver, Colorado for a first of its kind Testicular Cancer Summit, featuring Dr. Lawrence Einhorn as an honorary guest speaker! If you’ve been wondering what’s going on and what this is all about, here are the Top 5 things you need to know about the Testicular Cancer Summit in Denver this October.
It has been a year since my first blog for TCAF, and I finally feel ready to openly talk about why it took so long to write this. This time last year was extremely hard for me. Four months out from Nate’s RPLND, life had slowly begun returning back to normal and the realities of what that meant were hitting hard. Not only were we recovering from everything we had been through during our cancer journey, but we were suddenly facing a new challenge... infertility.
Country Jam 2017 is a wrap, and TCAF was there. Country Jam is an annual 4 day country music festival near Grand Junction, CO, which this year featured Kenny Chesney, Jason Aldean, Thomas Rhett, Justin Moore, Randy Houser, and so many other great artists! We'll let the pictures do the talking! Thanks to all of the wonderful TCAF volunteers and friends that came out, and for helping to make this event a success!
A year ago today. :( Never in a million years when I joined the Testicular Cancer Awareness Foundation back in 2014 as a blogger at first, did I ever think that this young man Jordan Jones, the son of TCAF's founder, Kim Jones, would eventually lose his life like this to a late recurrence of the disease after so long. It's just something that's been burned into me now, how precious life really is, and how uncertain everything is. Never waste a day or a moment, and make each one count for something. We're only here for a very short time.
In November of 2016, myself and a representative with the Emerald Coast Beard and Mustache Alliance (ECBMA) put on a few events to raise money for TCAF, and the "Go Nuts for No Shave November" campaign.
It was a beautiful and emotional day for the Jordan Jones Memorial Golf Tournament back on May 20th, 2017, at the at Adobe Creek National Golf Course. It was the 7th annual golf tournament benefiting the Testicular Cancer Awareness Foundation.
One of the most popular books for pregnant women is What to Expect When You’re Expecting. This book details the physical, mental, and emotional changes they’ll undergo as they travel through their journey and get that happy news - it’s a healthy boy/girl.
As I began chemo in November 2016, I realized a male-centric version, entitled What to Expect When You’re Expecting Chemo (Because Your Testicle Decided to Go Rogue and Try to Kill You) would have been a helpful title in my library. Unfortunately, this volume has yet to be written (which I’m going to chalk up to the obnoxiously long title). It looks like it’s up to me. I’ll be penning the first draft here, based on my experience of three rounds of BEP chemo.
Nothing matters more to all of us at the Testicular Cancer Awareness Foundation than getting out into the public, and helping to raise awareness about testicular cancer. It's the number one form of cancer in men ages 15-44, yet almost no one talks about the disease! The rate of testicular cancer in young men is nearly the same as the rate of breast cancer in young women, yet all you ever see are pink ribbons and breast cancer awareness campaigns. There's nothing wrong with that, but we need to be talking about men's cancers and testicular cancer, too! We need to see more BLUE out there, and so it was great to see so much awareness activity this past week by TCAF Ambassadors in both schools and at health fairs.
Today marks my last two days of chemotherapy for testicular cancer, six years ago. Why do I mark the last two days, and not the last day? Because I distinctly remember just how scared out of my mind I was, worrying that the chemotherapy hadn't done its job, and that I'd have to go through these months of misery all over again, possibly without a healthy exit.
April is testicular cancer awareness month, and as a six year survivor of this disease, I can tell you a few things about testicular cancer. The first is that contrary to what people might expect, testicular cancer is actually the #1 form of cancer in men ages 15-44 internationally, yet almost no one talks about the disease. It’s sad and frustrating that 20 years after the founding of a very famous organization in yellow by a now very infamous testicular cancer survivor, that we still have to struggle so hard for any sort of public awareness about this disease. In the U.S. alone, someone is diagnosed with testicular cancer every hour, and someone dies of this disease every day.
As an American, I tend to not pay too much attention to what members of the British Royal family are up to, but I just became a huge fan of Prince Harry. It turns out that he and I both have something in common, and that is two years of total chaos after traumatic events in our lives. For Prince Harry, it was the tragic loss of his mother, Princess Diana, 20 years ago when he was just 12 years old, and for myself, my cancer diagnosis six years ago at the age of 33.
Bringing Survivors and Experts Together for a Weekend of Awareness, Education and Support.
Mark your calendars. October 13, 14 & 15, 2017 at the University of Colorado Anschutz Medical Center will host the first Testicular Cancer Summit. During this weekend long event we will discuss life with cancer and the many lifestyle changes that can help the healing process. Motivational speakers, keynotes on lifestyle, and support systems will all be part of this summit. We hope to see you there.
In my years after cancer, I experienced several recurrence scares that were so bad and so real, that I thought for certain that my cancer had returned, that I had just lived my last good day, and that I was going to die. This is what's going through our minds when there's a cancer recurrence, real or imagined, captured with the help of breast cancer thriver, Nalie Agustin
An essay looking back on six years of young adult cancer survivorship, and how I finally managed to find peace after testicular cancer. If cancer were to take me now, this is how I would feel, and all that I've done to finally get there.
As I approach six years of cancer survivorship, never has it been more clear to me that cancer is not just a disease of our physical bodies, but a disease of our minds and souls as well. Thus, the argument that many make, is that cancer is not just a matter of eradicating the rogue cells from one's body, but of curing the entire patient.
The National Comprehensive Cancer Network (NCCN) Guidelines for are the bible by which Testicular Cancer patients are treated and managed. The follow-up care recommendations within these guidelines only goes out to 5 years, and even within those 5 years, there's been some significant adjustments to the recommendations over time. It's entirely possible that if you were diagnosed with testicular cancer within the past few years, that you might be able to make some adjustments to your follow-up schedules in favor of fewer scans or appointments, but what do you do after that? It's up to you and can go on a case-by-case basis. Here are some answers.
Experiencing fear on a regular basis comes with the territory of being a cancer survivor. It's a very normal and even healthy part of cancer survivorship, but something that needs to be managed, so here are six tips on how to help cope with and overcome it.
From that of complete darkness and feeling so hopeless, to then progressing so slowly with the smallest rays of hope, life after cancer has blossomed over the years into something truly beautiful and breathtaking.
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