u/closedwoncareer

A year ago I was sitting at my own desk when I found out I probably had cancer again.
There was no doctor in the room. No one was there at all. I had pulled up a radiology report from a scan I had done for something else, and I read it the way I have learned to read these things. Fast. Looking for the one line that matters. I found it near the bottom. A small mass on my right kidney. Mixed solid and cystic. About 1.4 centimeters. An outside read called it Bosniak III, the borderline category, the one where about half turn out to be cancer and half do not.

I have been a cancer patient long enough to know how the first hour goes. You read the words. You look up what they mean. You understand in the first thirty seconds that the news is bad, and then your body takes a minute to catch up. I sat there. I did not move. The thought that kept coming back was not dramatic. It was three words. Always fighting this.
I have been fighting this since I was sixteen.
In 1993, I had testicular cancer. I was a kid. I had four rounds of cisplatin and etoposide at Memorial Sloan Kettering, and a long abdominal surgery, and I lived. That treatment did exactly what it was supposed to do. I want to be clear about that, because none of what follows is a complaint about the medicine that saved me. The medicine worked. I am here because of it.
But platinum chemotherapy leaves a long shadow. The drugs that cure you in your teens are linked to a higher risk of other cancers and of heart disease decades later. Not the year after. Twenty, thirty years out, long after anyone is still watching.
That is the part almost no one is told.
Here is what should bother all of us. The formal follow-up for a testicular cancer survivor usually ends at five years. Five years clear and you are discharged, cured, sent back to your life. But the most serious late effects of the treatment do not arrive at five years. They arrive at fifteen, and twenty, and thirty. The science on this is neither new nor fringe. Some of it was built by the same doctors who treated me. The knowledge exists. It just stops at the exam room door.
I learned how true that was this spring.
When the kidney mass showed up, I did what you do. I got it imaged again. One cancer center read it one way: the gray zone, worth watching. Another center read the same scan and called it more than ninety percent likely to be cancer. Same images. Same kidney. Two different answers. If you have ever held two reports that did not agree, you know exactly how that feels. You are the one who has to decide which one to believe, and you never went to medical school.
The first plan was to watch it. Scan every few months and see what it did. I went along with that. It kept growing. From 1.4 to 1.7 to about 1.8 over the year. Small numbers, a few millimeters at a time, but always in the same direction.
In the middle of that watching, two things happened that taught me what advocacy actually costs.
Eight days before one of my appointments, a message came through the patient portal. It said the mass was not really significant, still mostly cystic, and that I could cancel the visit and just get another scan in a few months. I read it twice. Then I wrote back and quoted the other radiologist’s reading, the one that put it over 90%. The appointment stayed on the calendar.
I kept it. At that visit, I sat across from a specialist and asked the question that mattered most to me. I have a history of testicular cancer and platinum chemotherapy. Doesn’t that raise my risk for a second cancer? He did not think it did. He did not think platinum-based chemo was a significant risk factor for a second malignancy.
I had read the research. He had written the research in his own field. And I was sitting there being told the exact thing I had come in worried about was not a real concern.
That is the gap. That is the reason I am putting this on the page. The science is not the problem. The problem is that it does not reliably reach the person in the chair, so they have to carry it themselves. I had to be the one who knew my own risk. I had to be the one who pushed. I uploaded my own scans and asked for the opinion myself instead of waiting for the system to route me. I quoted one report back against the other. I asked the next question, and the next one, until the plan changed.
It is a real plan now. A biopsy first, because I have never had one, and a needle is the only thing that will finally settle what a year of imaging has been arguing about. Then ablation. They enter through the skin, guided by imaging, and destroy the mass with heat or cold. No open incision. That matters more for me than it would for most people, because my abdomen is already a map of old scars. A long incision from 1993. Two hernia repairs. A back surgery. Ablation goes around all of it. Then, a scan a few months later to confirm it worked.
So this is most likely my third cancer. The first one I beat. The second was a thyroid cancer last year, which I caught. This one I am going to treat before it gets a vote on how my story ends. My genetic testing came back negative for the known inherited cancer genes, so this is most likely not something I inherited. The most likely explanation is the treatment that saved my life thirty-three years ago. The cure is still being paid for. This is another installment.
If you are reading this because you just found your own mass, or because you are years past a cancer that everyone told you was finished, here are the things I wish someone had handed me.
A small kidney mass like mine, even if it turns out to be cancer, is very treatable when it is caught early. That holds for a lot of what gets caught late in survivors. Early is the whole game, and you can only be early if someone is still looking.
So be the one who keeps looking. You do not have to be loud. You do not have to fight anyone. You can ask what your treatment history means for the next twenty years. You can ask for the scan. You can ask for a second read when two readers disagree. You can write your own history down and carry it into every room, because you are the only person who sits in all of them. And you can find other people who have been through it, which is part of why I am writing this instead of keeping it to myself.
I am okay. I am treating this on my terms. I am going to keep telling the parts no one warned me about, because the warning is what helps.

I'm new to this sub. Wanted to introduce myself and put my story somewhere people understand it.

I'm a three-time cancer survivor. Testicular cancer at 16, back in 1993. Four rounds of cisplatin and etoposide at Memorial Sloan Kettering. Papillary thyroid cancer last year. And now a mass on my right kidney.

It showed up on a CT in May 2025 as an incidental finding. About 1.4 cm. It has grown across every scan since. 1.4 to 1.7 in March, about 1.8 on the June MRI. Small numbers, a few millimeters at a time, but in the same direction for a year.

The reads have not been clean. One center called it Bosniak III, the gray zone where about half turn out to be cancer. Another reads the same scan as a renal cortical neoplasm; their language is "over 90 percent malignant." Same images, same kidney, two different answers. If you've sat with two reports that don't agree, you know how that feels.

The plan now is a sequence. Biopsy first, because I've never had one, and a needle finally settles what the imaging keeps arguing about. Then, percutaneous thermal ablation. Then, a follow-up MRI about three months out. We went with ablation partly because my abdomen is already a map of scar tissue. A twelve-inch incision from 1993, two hernia repairs, and a laminectomy. Ablation goes around all of it.

Here's the part I keep coming back to. The cisplatin that cured me at 16 is linked to higher kidney cancer risk decades out. My genetic testing came back negative on the hereditary kidney panel, so this isn't a known inherited syndrome. So most likely this is my third cancer. And the most likely reason is the chemo that saved my life 33 years ago. The cure I got in 1993 is still being paid for.

If anyone here has done thermal ablation for a small renal mass, I'd be glad to hear how it went for you.

Hey everyone! I'm u/closedwoncareer, a founding moderator of r/healthadvocacy.

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I have a small kidney lesion that is 1.8cm which grew from 1.5cm from my last MRI six months ago. I have two different reads from MSK and Levine, one says 90% it’s malignant, originally classified as Bosniak IV the other says it’s Bosniak 2F. I had testicular cancer at 16 (33 years ago) with RPLND and scar tissue so not a candidate for robotic if or when they end up removing it. Will need to go through my side with surgery. Seeing my Levine Urologist next week to follow up and I’m guessing they’ll continue surveillance but wanted to see if anyone else has had anything like this with discrepancies in radiology reads. I also had thyroid cancer last year and had a partial thyroidectomy which I’m following up on every six months. My preference is to be more aggressive with my history. Thanks everyone!

For fellow survivors, especially the long-timers.

I had testicular cancer in 1993. Orchiectomy, chemo, the whole thing. Got through it, got told I was cured, and went on with my life.

Here’s what nobody told me: after losing a testicle and going through cisplatin-based chemo, your testosterone can run low, sometimes for years. Low testosterone isn’t just a libido thing. It causes fatigue, weight gain, low mood, brain fog, low motivation, poor sleep. I lived with a lot of that and chalked it up to getting older, stress, life.

I didn’t start testosterone replacement until about 15 years ago, which means I went a long time after treatment without anyone ever checking my level. No doctor flagged it. No follow-up plan included it. I had to find my way to it.

If you’ve had a testicle removed and/or been through chemo, ask for a morning total testosterone test. It’s a simple blood draw. If you’re tired all the time, gaining weight you can’t explain, feeling flat, don’t just assume that’s normal aging. Get the number checked. And if you’re on replacement, get it monitored, because the level can swing.

Wish someone had told me in my 20s instead of finding out in my late 30s. Posting in case it saves someone else the lost years

My mom went to the ER in March, thinking she had the flu. It turned out to be a bacterial infection that had seeded on a heart valve and was causing clots to form in her brain. She's 74. She had small strokes before anyone operated. She made it. She's home now and back to driving.

I've been a patient myself since I was 16, so I thought I knew how to do this. Doing it for someone you love is harder than doing it for yourself. When it's your own body, you can stay calm and clinical. When it's your mother, every delay feels like something being taken from you.

A few things I'd pass to anyone sitting in those chairs right now:

Track the trend, not the single number. The most useful thing we did was notice that something was bigger this week than last week, and connect it to the silence around a decision that kept getting deferred. That tracking isn't medicine. It's advocacy, and nobody in the building is assigned to do it except you.

Find the one person inside the system who will fight with you. For us, it was one doctor who refused to let the case drift. We were relentless on the outside. She was relentless on the inside. It took both. Find that person and hold onto them.

When the answer you get doesn't match the urgency you feel, don't just accept it. There's almost always another way through. We did things nobody told us to do because waiting wasn't safe.

Fill the room with people who love the patient. None of them could read a scan. That wasn't the point. A patient who knows she's loved fights differently.

If you're being made to feel like you're difficult for asking too many questions, you're not. You're the only person in that building whose whole job is that patient. Ask it again. Ask it louder.

Rooting for whoever you're sitting there for.

Got this autograph with my dad at the 1989 500 Home Run hitters show in Atlantic City. It’s my favorite one seeing as I got it in person. What’s your favorite autograph you’ve gotten?

Thirty-three years ago this week, I was sixteen years old and the best pitcher I had ever been, pitching for Fairfield Prep High School.
It was a Thursday night in late May 1993. The ACC championship game. The conference had existed since 1986, and our school had never won it. I started the game. The other team put up two in the first. I settled in. The lineup did the work behind me. We won eight to five. I went 8-3 in the season. The team met at home plate in a pile, and I was in it.
A few days later, I pitched Game 1 of the state tournament and won that one too. 9-3. I was the number one starter for one of the strongest programs in Connecticut, a junior, in the middle of the best run of my life. There were college scouts at games. There were people who thought I could play somewhere after high school. I thought so too.
That was this week, thirty-three years ago.
I do not remember the exact date I found the lump. I remember it was the last week of May. I remember a shower I had taken a thousand times and an ache that was not supposed to be there. I checked. There was something small and hard. I knew immediately it was not right.
The ER said it was probably an infection and sent me home with antibiotics and a follow-up. Five days later, I drove myself to that follow-up appointment in my father's Buick. A urologist I had never met sat across a wooden desk from me and said the word cancer out loud. I was alone in the room. I sat in the parking lot for a few minutes before I picked up the phone and called my mother.
The orchiectomy was scheduled for the following Monday.
That Monday was also the day of the state tournament quarterfinal. Our team's biggest game of the season. The original date had been rained out, and the rain date was the same morning as my surgery. The next game after my last shutout. I was supposed to pitch it. Instead, I was on an operating table.
The day before, I told my team what I wanted them to do. Win the state championship. I do not remember saying it clearly. I remember being scared and tired and trying to sound like the captain of the staff instead of a teenager who was about to lose a testicle. I told the guys I would see them after. I told the senior pitcher starting in my place that he had this. He told me later he had wanted to wear my number 13 for the game and could not get it in time.
They played without me on Monday afternoon. We were the eleventh seed. The other team was ranked third. We won, 5-4, on a two-out, two-run double in the sixth. The senior who took the ball in my place pitched seven innings. The win was dedicated to me. Every game from then on would be.
I found out from a hospital bed, one testicle lighter, that we had won.
The next game was the next day. Tuesday. The state semifinal. The other team was undefeated, twenty-five and zero entering the game, thirty-one straight wins, and defending state champions.
I went.
I was one day out of cancer surgery. I had a wound in my lower abdomen made by a urologist's scalpel. I was on pain medication. I limped into the dugout, sat down on the bench, and watched.
We jumped out to a 4-0 lead in the top of the first. The game was in our hands. They came back. A run in the first. Another in the third. Another in the fourth. They won 7-4. Their thirty-second straight win.
A reporter from the local paper covered the game. He wrote one sentence in his recap that has lived in my mother's tote of clippings for thirty-two years. He wrote that our team seemed inspired by a player who showed up for the game despite having recovered from surgery.
That is a reporter's way of saying it. The kid's way of saying it is that I could not stay home. I could have. Nobody would have faulted a sixteen-year-old for skipping his team's state semifinal one day after a cancer surgery. But the team was playing for me. If they were going to play for me, I was going to be there. Even if I had to limp. Even if I had to sit. Even if I was going to watch us lose.
My coach gave the reporter a quote that someone later had printed, laminated, and framed. My mom kept it and gave it to me years later. It said that nobody could take away that these kids were champions. That they had taught him a lot about character, perseverance, and pride. And that right now they were just pulling for me.
Right now, they’re just pulling for me.
That is the sentence. A coach looking at a season that had ended one round short of a state title, looking at a roster of kids who had just watched their teammate go under the knife, and deciding that the only thing left worth saying was that they were pulling for the kid.
I had left my team with four words before I went under. Win the state championship. They did not win it. But they played the game that came next with my name on their jerseys, metaphorically, and they won that one. That has been enough for thirty-three years.
Here is what I want to say about that week, this week, thirty-three years ago.
The diagnosis is not the moment your life changes. Your life had already changed. The diagnosis is the moment you find out.
A lot of people think a cancer story starts in a doctor's office. It does not. It starts with the last day before you knew. For me, it was a championship and a pile at home plate, and a shower a few days later that did not announce itself. For someone else, it is a Tuesday at the office, a Saturday soccer game, a regular morning. The diagnosis is just the door that opens. On the other side of the door is everything you did not know was already happening.
The door does not close. It stays open for the rest of your life. You walk back into your old days, the work, the family, the games. You are now a person who has been on the other side. The clock that started in that urologist's office never stopped running. Last year, a second cancer arrived, papillary thyroid cancer, probably linked to the chemo that cured the first. The door opened again.
If you are reading this in the week leading up to it, hold on to it. The pile at home plate. Tuesday morning. The shower that does not announce itself. The last day of whatever you thought your life was. That day is the thing you will remember.
If you are reading this in the week after, you are not alone. I have been there. I have been there more than once. The door is open, and you are still here.

June 1993. I was sixteen years old. The ACC championship was a few days behind us. I had pitched for a Jesuit high school in Connecticut, gone 9-3 my junior year with 60 strikeouts in 68 innings, and weighed 170 pounds. I threw in the mid-eighties. D1 scouts had been at my games. My coach had written my college recommendation letter that spring. He told the colleges to call him.

I was taking a shower one morning, and I felt an ache that wasn't supposed to be there. I checked. I felt something.

I went to the emergency room with what I thought was a routine problem. A doctor examined me. They drew blood. A nurse came in with the cart, took a few vials, and walked them down to the lab. I did not think about it again. They sent me home with antibiotics and told me to follow up with a urologist in five days.

The urologist examined me briefly. The bloodwork from the ER was on his desk. One number was off the charts. Alpha-fetoprotein. AFP. A protein that healthy adults barely produce. Mine was high enough that he did not need an ultrasound to know what he was looking at.

Stage IIC nonseminoma. Testicular cancer.

I had an orchiectomy at a hospital in Connecticut that week. A bigger surgery at Memorial Sloan Kettering a few weeks later, where the surgeon found cancer in seven of the eight lymph nodes he removed. Four cycles of cisplatin and etoposide through September and October. I dropped from 170 pounds to 137. I lost my hair. I could not walk up a flight of stairs without sitting down halfway.

Before the chemo started, my father drove me to a clinic and made me bank sperm. I was sixteen. I told him I just wanted to survive the next month. He told me I might want kids someday. He was right. One of my children, born years later through IVF, came from the vials we stored that summer.

I survived. The chemotherapy cisplatin worked. I went back to school. I went back to baseball.

By senior year, I had gained some of the weight back. But the body that had been throwing in the low eighties was gone. The velocity was gone. The command was different. I went 4-4. The D1 scouts stopped coming. I went to one college for a semester and tried to walk on. I did not make the team. I transferred to another school for three semesters. Then a third for two. I never graduated from any of them. I kept rebuilding.

By twenty, I was at a junior college in Connecticut. Three years older than the typical freshman. My best friend had played there the year before, called the coach, and told him to give me a look. The coach took the call. He took me in. We spent two years rebuilding the body that cisplatin had taken apart. From 175 pounds to 200. From low-eighties to 86 miles an hour.

In 1998, we won the NJCAA Division III national championship. The first Connecticut team to win one. I was the staff ace. I went 9-0 my sophomore year on a 44-5 team. Eight wins on the way to the title. The ninth win is what I have been doing ever since.

I built a career. I got married. I have wonderful children and a great life.

I thought the cancer chapter was closed.

In 2025, more than thirty years after my original diagnosis, I was diagnosed with papillary thyroid cancer. I am also currently being followed for a small kidney tumor that may be malignant, but very curable if cancerous. The drug that saved me in my teens did its job. It also showed up again, decades later, in ways the original protocols did not predict. Cisplatin late effects are documented in the literature, and the AYA cohort is the one that lives long enough for them to matter.

August 23, 1981. Yankee Stadium. I was five years old.

My dad next to me. My uncle on the other side.

Three baseballs came into the bleachers that day.

The first was Dave Winfield warming up. Hooked it into the bleachers. My cousin ended up with it.

The second was Oscar Gamble, Home run. My dad's business partner fought for it and won.

The third was Clint Hurdle.

He was running his between-innings laps. I was standing on my seat because at five I couldn't see over the railing. Hurdle looked up, saw a kid going crazy in the bleachers, took the ball out of his glove, and tossed it to me.

Still seems like one in a million. It was my first Yankee game.