What A Difference A Day Makes

After months of being on the phone to my regional healthcare system, I finally was able to get a Urologist assigned, and make an appointment. Without a biopsy or any imaging, the Urologist quickly went to “I think this is cancer, 95% chance.” We had a difficult discussion and concluded with the need for a biopsy. An order went in, the biopsy was scheduled, and I waited. Three days before the biopsy in May 2024, I went to my online portal to check the biopsy time. It was not there. The biopsy had been cancelled and not rescheduled. Another moment on the “roller coaster” where you sit in silence, in shock, trying to figure out what happened. Even more important, you have to get back up and find the next step.

Once again dear friends, the journey becomes a roller coaster.

I don’t like roller coasters.

“I only have to get back up one more time than I am knocked down by the cancer or the treatments. Or the system.”

That’s the thought I had one night and it is one of the things that helped me get through the roughest parts of the roller coaster ride. Instead of going back to the same healthcare system that had repeatedly failed me on this and on previous health issues, I decided to make a few phone calls. On one of the calls I was given the name of an independent healthcare agent in my county. Normally in the US, we can only switch healthcare systems around December during “open enrollment.” But I called and talked with the agent anyway. What a difference this call made, which you will see if you continue reading about my journey…

The agent explained she provided a professional service to help match people with the health insurance that best fit what they were looking for.

(Let me stop and say that I have MediCare health insurance, the government program I paid into over the life of my career.)

The agent was an expert in MediCare and the insurance companies that delivered the benefits to patients. We talked about what I wanted, including being able to move from the regional healthcare system to the University of California at San Diego. UCSD combines research, integration of research into healthcare, and teaching new medical professionals and has hospitals, clinics, urgent care and numerous specialty facilities.

With the answers I gave, the agent went off to narrow down insurance companies with the best three programs. She called back in a matter of hours and we went over the programs. One clearly seemed the best to me, and it was a company I knew about. I can talk more about that if you are interested, send me a message.

Where this made a life changing, or perhaps more accurately a life-saving moment was the timing. The agent knew of a way to switch my insurance so on June 1, 2024 I would be at UCSD, no need to wait five months for Open Enrollment, After months of the cancer running in me with no diagnosis at the smaller system, I was now in the California state-wide university hospital system. Within a few days I had new insurance cards and on June 1st I was able to call and start getting appointments lined up.

One more side note that may be useful… At one point at the smaller regional system I was so desperate to get help that I called UCSD and said I would pay out of pocket since my insurance would not transfer to them. I had two appointments and was told how serious the painful red area was, and by this time even the slightest pressure caused bleeding from inside. So on June 1st I was going to get help quickly and nothing would stop me.

With urgency, UCSD made an oncology appointment, and that department made an urology surgery appointment for me, on the same day! I made more progress in a few weeks at UCSD than I had in months with the smaller hospitals — administratively rigid & procedural.

Now the roller coaster goes into high gear. Information immediately comes at me from a 2” fire hose. There is little or no time to process everything I was being told. Months of delays turned into days of rapid change, with no guidance, no counseling, just strap on the parachute and jump.

June, 2025, when the Oncologist & Urologist say you have maybe 6 months to live…. (2026, I am still here!)

In a future update I will talk about a major failure in my medical care, the lack of counseling. My medical team went after my cancer, but all my efforts to get some counseling for the scariest events in my life…those efforts came up empty. I felt desperate to talk to even one other man that had faced the monster’s den that I was standing in front of…but there was no one. For now, hold that thought and I we will revisit this failure in patient care… I appreciate you being here and hope you will spread the word about Early Eyes Save Lives, help create the awareness this and all other cancers need. I’ll be back here very soon!

No Diagnosis? ADVOCATE!

APPOINTMENT PHONE CALL TO DOCTOR'S OFFICE**

Ty: Hi, I need an appointment with a urologist, please.

Clinic: You can’t see a urologist until you see your primary care doctor (PCP).

Ty: Okay. I think this is urgent. When can I see my PCP?

Clinic: Your PCP’s first available appointment is in two weeks.

Ty: (after a pause) Okay. I’ll wait.

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That was the moment I did what many people do—I waited.

I had noticed a small, painful spot under the skin, that seemed very firm.

That reddish spot is why I called my doctor’s office. What followed wasn’t healthcare; it was process. Patient vs The System. The system referred me to my primary care doctor instead of the Urologist I needed. Then I waited, weeks went by. Finally, a five minute PCP in-person appointment so I could be referred to Urology.

Then I waited, again, for weeks. Another short appointment—I was given a topical lotion, that caused a terrible burning pain. Another appointment, I was given catheters (long plastic rods) that had a steroid medication on them. I was told to put these inside my urethra. I started realizing treatments can be as bad as, or worse than what’s being treated. At home, I barely got the first (of many) catheters in (about an inch) and started bleeding profusely. Scary and painful stuff.

Then the Urologist left the clinic and moved away. I had to start over, find a new Urologist. The "Uro department” went from three to two doctors. Request after Uro request, this turned into months—I even tried to escalate up the system so I could get a Urologist appointment. I tried Patient Services. I tried! And I waited. Each step felt procedural, detached from the reality that something in my body was changing quickly.

Long before I had a diagnosis, I knew something wasn’t right. Rare cancers don’t announce themselves loudly. They don’t trigger alarms or urgency. And when answers are slow, vague, or deferred, advocacy stops being optional—it becomes self-preservation.

This post is about what it means to speak up before you’re given permission to worry. I will talk about why action matters even when no one has given a medical name to the thing growing in your body. This blog is about how waiting—quietly, politely—can cost more time than you think you have. PSCC moved quickly, my decisions on how to get an accurate diagnosis were my responsibility and no one else’s. I had to take charge and take action.

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What I learned:

1. PSCC doesn’t wait politely. In my case, the cancer progressed while appointments were delayed—moving faster than the process meant to identify it. I recently heard about men having PSCC for years before having real problems began, but mine only needed a few months to get to Stage 3.

2. Warning - real life ahead… My cancer started under the skin and moved to the surface. I have heard others had their cancer start on the surface and move deeper. Either way, once invasive, PSCC has a known pathway to the inguinal (groin) lymph nodes, sometimes within months. Eventually I had 19 of these nodes removed, with some being malignant, which is why I needed chemotherapy next. I don’t want to digress too much here, but I want to use my lived-experience so you don't have to go through what I did.

3. No one ever told me any of this…and yes, I searched the internet and found deeply disturbing images. I don’t recommend that. Get medical help and get it quickly. Learn to be a successful squeaky wheel.
   
   

I had a lesion. Wrong - it was Stage 3 cancer.

This blog is being created for you—wherever you are—because Penile Squamous Cell Carcinoma (PSCC) is rare, and rarity leads to delay. PSCC has no borders. It affects men, partners, families, and caregivers everywhere.

Many people have never heard of PSCC. Early signs are often dismissed as irritation, infection, or aging. Symptoms involve intimate anatomy, making conversations with doctors difficult. Some clinicians may never encounter PSCC in their careers and may not pursue early biopsy. Healthcare Systems can cause delays—appointments, referrals, cancellations—adding weeks or months while cancer spreads. And fear, embarrassment, or uncertainty can keep people from seeking care at all.

What I learned to do:

• Become aware of PSCC & it’s treatment

• Advocate for myself to get the best outcome

• Challenge everything, get second opinions

For me, delay was not theoretical.

For months, my concerns were treated as non-urgent within my regional healthcare system. I received two formal letters stating I had no immediate medical need to seek out-of-network care to save my life. My assignment to a urologist took months. A biopsy was ordered, then cancelled. No meaningful diagnostic steps were taken while visible and painful changes were happening quickly.

During that time, PSCC was running a sprint inside me.

Healthcare systems move in weeks and months. Aggressive cancer does not. Time matters with PSCC, and I never heard the words “Stage 1” or “Stage 2.” By the time my diagnosis was finally made, my cancer was already Stage 3b.

Everything changed when I transferred my care to a large California university-based healthcare system. There, urgency replaced delay. A biopsy was ordered. A diagnosis was made: Penile Squamous Cell Carcinoma, Stage 3b.

My care was taken on urgently by the University of California, San Diego. While no system is perfect, the speed, seriousness, and coordination of care there saved my life. By then, PSCC had already spread to my inguinal lymph nodes—but timely action made the difference in saving my life.

Certain words carry weight:

• Penis.

• Penile.

• Biopsy.

• Metastasize.

• Cancer. Radiation. Chemotherapy.

Heard one at a time, they can feel awkward or frightening. For me, I wasn’t given time to feel embarrassed. My life accelerated suddenly into a race through uncertainty, darkness, and fog.

I’m sharing this not to assign blame, but to make one point clear: when a cancer is rare, it can be overlooked—and results-driven self-advocacy becomes critical.

This blog exists to help reduce delay—for you or for someone you love. A diagnosis is frightening, but what follows can bring frustration, confusion, and unexpected challenges. My goal is to help surface those issues early, so you can plan more effectively. Getting your diagnosis promptly is critical, and then everything you do next shapes your outcome.

Through these posts, I will share my experience with PSCC, surgery, chemotherapy, and life after treatment—not to provide medical advice, and not to document every detail, but to offer context. I focus on process, not spectacle.

In upcoming entries, I will explore:

• How my diagnosis was finally made

• How concerns (mine, caregivers) were raised—and sometimes missed

• How family and doctors helped shape initial decisions, and how we refined them later

• How treatment unfolded

• How recovery continues into survivorship

I will share what helped, what was unclear, and what I wish I had known earlier.

My care team includes my family, friends and my UCSD-based medical team.

In an upcoming entry, I will talk about communication with my care team. We are not taught to speak about cancer, and mortality. People say things to cancer patients that are well meaning, but don’t always land as they were intended. I will share my approach to communicating with my team.

‘Yes, I am always barefoot!’

This blog is also for caregivers. Partners, family members, and loved ones often carry uncertainty quietly while trying to provide support. I will share examples of how conversations unfolded, where their advocacy mattered most, and how navigating cancer is rarely a solo effort. Diagnosis is the first difficulty, more will follow—which I called ‘the roller coaster.’ Recognizing there will be ups and downs can help you lean into things, one day at a time.

PSCC awareness depends on attention—from patients, caregivers, and clinicians alike. Good outcomes depend on early recognition, timely diagnosis, and the confidence to speak up when something doesn’t feel right.

If this blog helps even one person seek care sooner, ask a clearer question, or feel more prepared to advocate for themselves or someone they love, then sharing my journey has served its purpose.