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.
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.
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 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.
Every single testicular cancer survivor and their caregivers should be aware of the possibility of low or irregular testosterone levels after cancer, and that no, the other testicle might not necessarily ‘pick up the slack,’ as is commonly believed. It isn’t that simple. Every medical professional should also be aware of this possibility with testicular cancer survivors, especially if they’re symptomatic of hypogonadism.
On at least two occasions when I've mentioned my cancer story to new friends or acquaintances that hadn't known, I've received comments that were just short of dismissive that testicular cancer is an "easy cancer", alluding to the high cure rate. I'll be honest in saying that I haven't been offended by such comments, because I know that short of having been there in some way themselves, it's simply impossible for people to truly know what a cancer diagnosis feels like, nor all that one entails.
It seems like every few months, a story pops up somewhere where somebody managed to detect their testicular cancer with a pregnancy test. Yes, it's true! Thiscan be done. In a strange coincidence of nature, the hormone called beta human chorionic gonadotropin, or HCG for short, which is emitted from the cells that form the placenta when a woman is pregnant and is what the pregnancy test looks for, can also be emitted by some types of testicular cancer. Since HCG should never be elevated in men except for in a few rare and very specific situations, a positive pregnancy test result in a man is almost a sure sign of testicular cancer!
In February 2015, Steven Petrow published an article in the Washington Post titled "Guys, here’s why it’s not worth testing yourself for a ‘lump’ down there", coming out against testicular self-exams (TSE) after having previously been supportive of them. What's surprising about the article is not just that such a view against testicular self-exams exists, but because Mr. Petrow himself is a twenty years and change survivor of advanced stage testicular cancer. I applaud and congratulate Mr. Petrow on reaching such a milestone. It's something that we cancer survivors take great pride in and stories like his are inspiring to so many of us, but I could not disagree more with his recommendation against TSE. Petrow thinks that it's "smarter" now to keep his hands to himself, but is it really?
After our fights with cancer are over, we all want so badly to believe that everything is behind us and that life is going to get back to normal. Those first weeks and months after our cancer fights are such a precious time. It’s our first taste of freedom after having been wrongfully held hostage by cancer for so long. I had my life back, but as time and the months went on I realized that it wasn’t my old life that I had back, but rather an entirely new one. Cancer survivorship brings with it an entirely new set of life circumstances and a whole lot of firsts, many of which I was completely unprepared to handle or to deal with at all.
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