Why I Made This Graphic

I never heard the words Stage 1 or Stage 2.

By the time I switched healthcare systems and found doctors who took my cancer seriously, I was told I had Stage 3 penile squamous cell carcinoma. I remember the shock. I remember the breath leaving me. For a few long seconds, it felt like I was suffocating.

Then I was told that amputating the source of my PSCC was not enough. I would need chemotherapy. Again, I was stunned. Again, breathless.

Later, after nearly a year of believing I was cancer free, I was told I needed immediate thoracic surgery. Another wave. Another moment where I had to stop, breathe, and absorb what cancer had just thrown at me.

No more.

I am not going to stand still in the path of the PSCC hurricane waiting to see what flies at me next. I am getting on the wave instead of letting it crush me.

That is why this graphic exists.

Over the past few months, I have been researching PSCC, treatment options, ctDNA assays like Signatera, surveillance strategies, radiation, immunotherapy, and the difficult timing decisions that come with recurrent or metastatic cancer. My doctors still lead my care. But I need to understand enough to ask better questions, challenge assumptions, and participate in decisions that may shape the rest of my life.

This graphic is one of my personal “war games.”

It is not a prescription. It is not a guideline. It is a thinking tool.

It helps me map where I am now: positive low-level Signatera, lung surgery completed, prior TIP chemotherapy, and the possibility of more cancer appearing later on imaging. It helps me think through questions like: Should CT surveillance move from every three months to every eight weeks? How often should Signatera be repeated? If one or two isolated sites appear, could radiation be used for local control? If more sites appear, when do we shift toward systemic therapy such as immunotherapy?

Making the graphic helped me understand the difference between watching and waiting, between local treatment and systemic treatment, between adjuvant and neoadjuvant therapy, and between fear-driven decisions and data-informed decisions.

Why share something so specific to my situation?

Because every cancer patient has to decide how informed they want to be.

For some people, being informed means listening carefully to their doctor and trusting the plan. For others, it means reading studies, asking for second opinions, talking with a partner, finding a cancer mentor, or asking the same question three different ways until the trade-offs finally make sense.

There is no single right way to do this.

But for me, being informed gives me steadier ground when the choices all feel invasive, painful, uncertain, or unfair. It helps me bring data into the room with me. It helps me understand what I am accepting, what I am delaying, and what I am fighting for.

My approach is not for everyone.

But it works for me.

And I offer it as one viewpoint for anyone else facing a rare cancer, a frightening recurrence, or a future that suddenly requires more courage than expected.

Do your best at each stage of your journey. Ask the questions you need to ask. Bring the people you trust close. Learn enough to feel present in your own care.

I wish you and your inner circle peace.