Testicular Cancer

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    How a Familial Mediterranean Fever Attack Affects Your Day

    The ache in my hands and legs kept me awake most of the night. When my first alarm starts playing Adele’s, “Hello,” I already know the type of day I’m facing. I silence the alarm and put a pillow in front of my face to block the glare from the smart light that turned on with the alarm. An hour later, One Republic begins their strings rendition of “Wanted.” I do the math in my head, deciding which to-do items require my attention before work. If I skip the shower, I can lie under the warm comforter for another 30 minutes. If I skip breakfast, I can add another 10 minutes to my blanket burrito. I imagine the pain will subside in that time, but it never does. There’s a chill inside my body, a cold that’s impossible to warm. I feel the fever without touching a thermometer. When you have a fever nine days out of 10, verifying it with an instrument is pointless. The numbers on the display don’t change what has to be done. I put on sweats and a hoodie, pulling the fuzzy hood up over my head. My vision is like looking through a steam-covered window. Grabbing my glasses from the nearby bookshelf doesn’t help. The blur will subside over the next hour. In a meandering mess, I trudge off to the bathroom. The reflection in the mirror is worthy of a Stephen King novel. Skipping a shower is no longer an option. Mentally, I run down my list again, finding another item to forego. It’s day one of the fever. Most attacks and their accompanying fevers last 48-72 hours, so the cold inside me isn’t going away today. I decide to forgo ironing a shirt. I pick a light pullover sweater and make a mental note that I will have to keep it on all day. The blue cabled pattern will conceal the fact that my dress shirt looks like it spent six months in the bottom of my gym bag. Familial Mediterranean fever causes widespread inflammation. As the inflammation increases, it crushes vital organs. The pain in my abdomen is incessant, but during an attack, it feels like someone wrapped dozens of belts around my midsection and is methodically pulling each one tighter with every breath. I breathe in with all my strength, but my damaged lungs can only take so much. The hot water in the shower comforts the thousands of goosebumps that came to attention as I removed my sweats. I revel for a moment in the first positive sensation since I crawled out from under the covers. The heat makes me stop shivering, but the chill inside remains, a stubborn tyrant sheltering deep within my bones. I know the water is too hot and likely damaging the natural oils in my skin, but the temporary relief is worth the devastation. I make another mental note to put on lotion later. After the shower, I steady myself with one hand on the counter while I dry off. My head spins like I just stepped off a merry-go-round. The counter keeps me upright. When I’m dried off, the next battle begins. Every inch of my skin is tender like a freshly skinned knee and begs me to skip wearing clothes. If only naked bookkeeping were a thing. My eyes survey the closet rack, searching for a companion that will cause the least discomfort. I pick a shirt two sizes too big and the khakis with the stretchiest comfort band. I threw out any hopes of being a fashion plate years ago when I lost the ability to sleep through the night. Even choosing underwear is a matter of some consideration. FMF can cause inflammation to develop in your scrotum. I know, TMI, but if you weren’t aware, you need to know this can happen. The first time it occurred, it terrified me and sent me down dizzying paths of WebMD exploring everything from hernias to testicular cancer. The skin in that area becomes so sensitive that anything touching it is painful. I toy with the idea of going commando, but I know that will make me even more uncomfortable. At the back of the drawer, I find a stretched-out pair of black boxer briefs. I know I’ll be pulling them up all day, but they won’t add any pressure to my problem area. It’s a similar battle with socks. I push aside the Gold-Toe dress socks to search for another pair of diabetic socks. Surely I’ve not worn them all since the last laundry day. They’re not stylish, but they won’t cause as much pain as normal socks. Only five minutes later than I should be, I finally make it out the door. Sitting at my maroon desk in my office, I scan the piles of paper to pick a project to focus on. My mind is a hazy gray, and the mountains of white and manilla in front of me are greater than my climbing skills. The lack of sleep and pulsating body pain make my brain chowder soup. Like a toddler struggling to put blocks into a box, I concentrate on which column to put my numbers in. The morning hours click away as my body acclimates to the internal pain. My office is a mile from my house, so I get to go home for lunch. The lunch break is too short, but gives me at least 15 minutes to slip off my shoes and collapse on the bed. I fantasize about telling my boss I’m not coming back — not today, not ever. Then I remember that cardboard and concrete are less comfortable than my bed and push myself upright again. Most days, I skip eating lunch for two reasons. One, FMF inflammation buildup in my abdomen during an attack makes my gastroparesis worse. Digesting much solid food is nearly impossible. Two, eating steals valuable time I could spend sprawled across my pinch-pleat comforter. There are always bags of pretzel sticks in my desk drawer if I get peckish later in the day. The afternoon shift consumes all of my remaining energy. My productivity level is lower than I’d like, but I finish everything with a deadline for that day. At 5:00 p.m., I rush back home to the sweet relief of horizontal living. As I close my front door and flip on the hall light, my mind is already dreaming of the warm cuddle of my memory foam mattress. By this point, hunger is competing against exhaustion. My stomach has patiently waited through most of the day, satisfied with a bottle of coke, a piece of string cheese, a small bag of pretzels, and a handful of butter M&Ms. It’s tempting to ignore it and sink into my waiting haven, but that menu is far from a healthy diet. I force myself to eat, but then eat too much because my exhausted brain can’t process portion control. My hand moves food to my mouth out of habit, oblivious to any indications of a full stomach. My plans after dinner should involve 30 minutes on the elliptical and some writing time, but my legs say there’s no walking other than going from the kitchen to the bedroom. Instead, I grab my tablet and head to bed. Outside, the horizon still reflects the red glow of the sun’s last light as I pick an episode of “Star Trek: The Next Generation” to watch. Nights like these, I pick something I’ve seen before. I know I won’t be awake for the whole thing, anyway. Not long later, after Picard says, “Engage,” I’m asleep, or at least in a close facsimile. At 8:30 p.m., Google Assistant turns out the lights. The change in lighting stirs me to semiconsciousness, but I quickly drift back to oblivion. Tomorrow, I will climb this mountain again. Until next time, keep fighting.

    Community Voices

    CURING HUMANITY

    <p>CURING HUMANITY</p>
    Community Voices

    Thank you for everything Alex Trebek. #CheckInWithMe

    <p>Thank you for everything Alex Trebek. <a class="tm-topic-link mighty-topic" title="#CheckInWithMe: Give and get support here." href="/topic/checkinwithme/" data-id="5b8805a6f1484800aed7723f" data-name="#CheckInWithMe: Give and get support here." aria-label="hashtag #CheckInWithMe: Give and get support here.">#CheckInWithMe</a> </p>
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    Hero rock-heroes of oncology

    <p>Hero rock-heroes of oncology</p>
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    Movember

    Movember Foundation: Norman Torres' Testicular Cancer Story

    Editor’s Note: This story was written by Movember community member Norman Torres, Student Ambassador for Movember. Hey there! I’m Norman Torres. I’m 21 years old and I use he/him pronouns. I’m an incoming senior at the University of Texas at Austin studying Exercise Science & Medical Fitness. I’ve been a Mo-Bro for about three years now and I’m currently a Student Ambassador for UT. Hook ‘em! You’re probably wondering what’s up with the title. Well, my story starts at the age of 3 — the age I began dance classes. After my parents saw how fascinated I was watching my sister practice and perform at my hometown studio, they felt it was only right to sign me up. That’s where I began to challenge the everyday views of masculinity. I’m from a small town in Texas and the idea of a boy joining dance rather than youth sports was unheard of. My dad of course encouraged me to try other sports, but never forced me to do something I didn’t want to do. As a kid, I was able to explore and learn about the person I was. My parents allowed me to walk around the house wearing my sister’s dresses, stumble in my mom’s heels and at times even put on makeup. The environment that my family created was always welcoming and accepting. When I decided to come out at the age of 18, I knew I would have their full support. Before I came out, I faced an unexpected adversity: testicular cancer. The thought of where I would be right now if I hadn’t taken action as soon as I did scares the crap out of me. I caught my cancer at the earliest stages, but what if I had waited days more? Weeks more? Months more? What would have happened? These are the questions that I had in my mind when I chose to be a Student Ambassador for Movember. At the age of 17, I had no idea about testicular cancer and the signs of it. Nobody had spoken to me about it before, so it definitely put a delay on the identification of it. The only way I would have gotten myself checked out was because of the swift actions my dad took. As a cancer survivor himself, he knew that time is of the essence for any type of health concern, so from one day to the next I was being treated for the tumor I had. I’m happy to say that this month marks my four years in remission, one more year away from being classified as a cancer-free patient. This is really where everything gets tied together. You see, I’m not sure how my life would be like if I wouldn’t have started dancing. Allowing me to participate, my family created a home for me to feel comfortable being the individual I was and wanted to be. This environment is what allowed me to feel comfortable discussing my symptoms with my parents early on. This environment was what allowed me to feel comfortable coming out as a gay man. Today, this environment is what has allowed me to share struggles with mental health and feel OK with doing so. When I grow my mustache, I use it as a display of my story and the stories across the world for men. Everyone has a story and everyone should be alive to tell it. If there is anything I would want for people to take from this, it’s the importance of how acceptance and solidarity can truly affect one’s life. My parents willingness to stand right alongside me in everything I have done has allowed me to thrive as the individual I am today. With the mission of Movember in mind, being there for others and loving them unconditionally is what will help change the face of men’s health. The movement towards a healthier, brighter future isn’t that hard to begin, it’s only a conversation away. Take time to learn how to be an ally for the LGBTQ+ community, especially the Black LGBTQ+ community. In addition to this, take time to donate to causes like Movember that uplift these voices and spread a message of family. You can find Norman’s Mo-Bro Page to donate here.

    Movember

    Communication Is Important in the Time of COVID-19

    Editor’s Note: This story was written by Movember community member Ryne Turner from Greensville, SC. The following story is brought to you by Movember. Movember is the leading charity dedicated to changing the face of men’s health around the world with a singular goal to stop men dying too young, Movember supports the following causes: prostate cancer , testicular cancer , mental health and suicide prevention. Since 2003, the support of more than five million participants has funded over 1,200 innovative projects across more than 20 countries. To learn more, please visit movember.com/stayingconnected. My new reality due to the coronavirus (COVID-19) — the new viral strain in the coronavirus family that affects the lungs and respiratory system — is honestly just organized chaos. My job is still considered an essential function so I am still having to work a full schedule every day. I try to work from home some, go into the office only when I have to, and go to project sites on a rare occasion. Leaving the house has become a nervous necessity for many people, but I feel even more so for us who are considered “at-risk” due to my testicular cancer diagnosis. I personally feel that I am trying to still do everything as if things are “normal,” and that’s causing anxiety because things aren’t normal. But, that’s OK. I am a very active person, and not having my gym available and having to social distance has almost brought a sense of loneliness and depression . Trying to accept a different type of workout or a different type of family dinner is what I am trying to wrap my mind around. I am a creature of habit and do not like change at all, so I think focusing on accepting the ridiculousness of life at this moment is the only way we can overcome it. My family is trying to stay busy by keeping our boys on somewhat of a school schedule and being outside as much as possible. If it’s not raining, we are trying to get everyone into the backyard and moving. We are taking lots of walks, playing soccer and sometimes just exploring the backyard and finding bugs. We set up a Zoom storytime, reading with my parents for the boys. For the past eight or nine years, my group of friends have gotten together for golf, darts, bowling or go-kart racing every month or two. Since social distancing has stopped all of that, we are trying to set up an online poker event where we can hang out, talk trash and have a few laughs. The way I am trying to balance it is to be fully involved in each thing I am doing at that moment. I explain to the boys that when daddy has to go to his office upstairs, he has to work; when they see daddy, then we can play. I try to let them stay on their schedule, which my amazing wife has put together for them, so they can keep some sense of normalcy and continue to learn and grow. I do my best to not mess up the great job she does on a daily basis! It’s more important than ever to keep the conversation going. Even if it’s just to check-in or talk about nothing, we need to talk. For more on the coronavirus, check out the following stories from The Mighty community: 7 Things to Do If Social Distancing Is Triggering Your Depression What You Should Know About Social Distancing During COVID-19 How Can You Tell the Difference Between Anxiety and COVID-19 Symptoms? How Is the New Coronavirus Treated? 10 Face Masks People With Chronic Illness Recommend Creative Activities to Try With Your Kids While We’re Isolated at Home

    Community Voices

    (IM A SURVIVOR OF TESTICULAR CANCER 2X)

    my name is todd richard koza im 39 years old an im a survivor of testicular cancer 2 x, an im cancer free 4 years now……

    Do u know how Rare u here about testicular cancer on tv never, u here about breast cancer,brain cancer,lung cancer,pancreatic cancer,lukeima,hodgekins,bone cancer an more….. Men at 15-35 get testicular cancer an live an fight but some don’t….. I’m making a stand for men around the world an every human being dealing with cancer it’s a bad disease to have u could die from it I lost my mom an uncle from cancer an ima survivor of testicular cancer 2 X…….. Please gentlemen go to the doctor an get ur self checked cause if u don’t ur going to go through lots of hell to get rid of cancer an let me tell u it’s not easy your going to have to go through treatments lots of them an blood work an chemotherapy an radiation therapy an it’s going to take a toll on ur body, Loss of hair, throwing up, hot an cold flashes etc.. But u will be sore after all this is done u won’t be able to rest but when you do rest it’s starts all over again treatments everything… So I’m standing up 2 cancer an ready to stop it I its tracks…. Have anybody ever see somebody go through cancer it’s not fun, they’re always sick an in bed fighting this fucking disease that’s going to kill them etc. men don’t be afraid to step up an get urself checked out ok it’s worth it in the long run…… I was in high school the first time I had cancer an the 2nd time at work an my co-workers were scared for me but they were there for me anything that i need they were there helping me out and more… Now I’m cancer free over 4 years now an getting busy living… So guys who’s with me on the fight to stop testicular cancer in its tracks, I made a group on Facebook if u gentlemen want to join ok an my team name is “SHORTY KOZA N’ THE SURVIVORS”,,,,please talk to me I’m here to help an I’m behind u all 100%…. I’m spreading the word an I would love to have more help getting more viewers etc… What would u do if u didn’t get checked out an u feel sick an in pain an more……

    Community Voices
    Scott Petinga

    How Advances in Tech are Revolutionizing the Business Side of Medicine

    While most of today’s headlines focus on new FDA-approved drug launches and the overall increasing cost of our health care in the U.S., the real big news is on how advances in data, artificial intelligence and patient advocacy are lining up to transform the entire patient-care experience as we know it. As almost anyone dealing with the modern health care system can attest, this is an area where improvements have been sorely needed for some time. Gone, in large measure, is the faith we once had as patients, that we’re being diagnosed properly, being given the best treatment options available and even being billed correctly when we’re finally invoiced. The internet has been the great equalizer when it comes to improving the patient journey. As a resource, it’s allowed patients to research their ailments, discover treatment options — including holistic and experimental ones, identify noted specialists in the field and open access to affordable prescription medications. Sadly enough, it’s the health care industry itself that’s fallen short when it comes to giving patients a truly satisfying customer experience. It’s difficult to blame them. The industry is on a playing field that’s largely dominated by the conflicting needs of institutions, pharmaceutical manufacturers, medical device conglomerates, insurance companies, regulators and lobbyists. It’s no wonder the patient experience has lost primary importance. If there’s one thing I’ve learned from my own journey, it’s that a big part of healing is giving patients hope and support. This part of the healing process is often overlooked in the medical community. Fortunately, there is a bright spot on the horizon. Having seen how data analysis, artificial intelligence and even modern consumer engagement methods have improved business performance across the board, the medical community is finally coming to the realization that a modernization effort is necessary. That’s not easy for a gigantic industry that’s thrived on an abundance of caution and always been slow to embrace change. But it is happening. In my own experience, as a frustrated testicular cancer survivor, I often found myself informing my own doctors about new treatment methods or effective support services that are available to survivors of this devastating disease. On my trek to recovery, I’d identified a number of areas where the patient experience had fallen woefully short. Often times, my doctors even agreed with me. First, as a patient advocate for my own health, then as founder of both The Center for Advocacy for Cancer of the Testes International (CACTI) and the TH!NK DIFFERENT Foundation, I started putting together a network of professionals and resources that could help make meaningful improvements to the patient journey. Data was an early ally to my cause. Through the TH!NK DIFFERENT Foundation, we are independently supporting the largest testicular cancer database which was established at the USC Norris Comprehensive Cancer Center in Los Angeles. Gathering information about cutting-edge treatment options, patient experiences and the hormonal effects of cancer therapy has been invaluable and groundbreaking. We’ve had promising results guiding future treatment and surveillance of survivors. Inspired by my talks with researchers and medical professionals, I decided to earn a degree as a certified Strategic Healthcare Advisor from Cornell University. With this degree, I can start applying my two and a half decades of using predictive analysis, business acumen and maneuvering through cancer diagnosis, treatment and survivorship to help shape the future of medicine. Together with other advocates and medical practitioners, I’ve started a new consulting agency known as Revitally, which will leverage the power of data, AI and analysis to fast-track long overdue changes in the medical industry. Revitally is going to help healthcare businesses plan strategicallyfor the future, based on facts, statistics and trends in the marketplace — not on guesses and things that worked yesterday. These are all signs that the medical community is the beginning of a transformative era, one that is sure to make marked differences in the way patients are cared for and treated going forward. Scott Petinga is on a one-man crusade to change the way patient advocacy works on a global scale. Since successfully battling testicular cancer 15 years ago — where he witnessed firsthand the significant service shortcomings in the cancer treatment community — Petinga has been active in causes that support men’s health. He founded the TH!NK DIFFERENT Foundation and Center of Advocacy for Cancer of the Testes International (CACTI) which both strives to redefine the way patient’s receive care and is helping reshape the voice of advocacy globally.

    Sam Corbett

    The Sheepdogs' Sam Corbett Opens Up About His Cancer Diagnosis

    The following story is brought to you by Movember. Movember is the leading charity dedicated to changing the face of men’s health around the world. With a singular goal to stop men dying too young, Movember supports the following causes: prostate cancer, testicular cancer, mental health and suicide prevention. Since 2003, the support of more than 5 million participants has funded over 1,200 innovative projects across more than 20 countries. Visit Movember.com to donate. I want to be specific about what it was so that anybody else who was diagnosed with testicular cancer does not feel the same kind of embarrassment that I did at the time. When I first was diagnosed, I had just turned 35 and my wife had just gotten pregnant. I had this diagnosis. It seemed like a real turning point, and in a lot of ways I kept thinking, worst case scenario, you know, “What if I’m not alive for the birth of my daughter?” I kept thinking, well, that’s my first goal is to be around for that. Now that’s happened. She’s 9 months old now, and my next goal is to be alive long enough that she remembers who I am. I would often lie awake at night just thinking about what was going on and the ramifications of it. My wife would roll over and say “oh, you’re still awake. You can only think about it for another 15 minutes. Then you’d have to go to sleep.” When I first noticed that there was a lump there and that there was something wrong, I waited a week to go get it checked out. Now a week is not a very long time. It’s probably not a big deal, but I should have just gone right away. Maybe if I had gone in and got checked out earlier, it wouldn’t have spread into my lymph node or maybe not. Never let something like your work life postpone getting health treatments. Looking back, that’s very clear to me now, but at the time it wasn’t. We’ve been a band for about 15 years, so these guys are my best friends. We’re very close. We’re like a family. You know, right off the bat, as soon as I knew I had to have the surgery, we had to cancel shows, but they didn’t care. They knew that I had to do it to get the surgery done as quickly as possible. It makes me appreciate not only did I get to be a musician, but I get to be in a band that I really do love with guys that are my best friends and guys that I really love. There’s sort of a perception that men have to work really hard to provide for their family. And it made me think of doing things like putting my work life in front of getting my personal health taken care of. So that is something that I think you have to be aware of that health comes first. And not just my physical health, my mental health as well. Because if I don’t have that, I’m not going to enjoy my work. I’m not going to enjoy my family. I’m not going to join my life. It’s just very important to make sure that’s a priority.