A point I keep returning to over and over again is that the data in the field of colorectal cancer quite simply sucks—not through fault, but through circumstance.
This is for a variety of reasons:
The surge in colorectal cancers in young people is very new—we don’t know the long term consequences because it has not yet been a long time. And let me tell you it feels really good to be so zeitgeist-y.
Many of the treatments have advanced in the past several years, meaning there is no longevity data available.
The treatments and the ability to analyze data are advancing at an unprecedentedly fast pace, and we can reasonably expect that to continue given the current state of AI. I would be crazy to do anything that’s current now if I can kick the can (ha) even a short distance down the road.
This lack of data applies across the board.
To radiation:
The protocols have changed so much over the past thirty years that we simply don’t know the statistics on long term outcomes.
The patients back then tended to be older so would be dead anyway before anyone could evaluate the impact of radiation after forty or fifty years.
Proton radiation is new.
Doing pelvic radiation with a cylindrical vaginal dilator (read: dildo in scrubs) in place is a recent innovation.
To chemo:
They’re constantly changing the cocktails and the sequencing and the delivery mechanisms.
They can’t say the rates of a durable response five years out among young people because young people weren’t getting ass cancer at these astonishing rates five years ago. They just do not know.
To surgery:
Every body is different and responds differently.
They can’t know the rates of recurrence once they cut out my ass because they don’t know what caused the cancer in the first place. Will it come back higher in my colon? In my stomach? For all the same reasons as above, too. This is all new.
If you think I sound defensive and prickly about this, you’re right. I feel defensive. My organs are under attack and require a strong defense! But I am almost definitely over-explaining and repeating myself as a result. It’s giving self-justifying, babe. Relax.
But I’ve been receiving a lot of pressure to pursue a “cure” by cutting out my rectum and never looking back.
I’ve referred to my tumor as “inoperable” elsewhere because for me, it is. The surgical option is not a real option, it’s a life sentence.
For me the “cure” of removing my rectum (and possibly more) will not mean putting the cancer behind me. It will mean carrying my cancer around for the rest of my life in the form of a shit-bag attached to my hip.
It is not in alignment with my zero-waste lifestyle goals to shit in a plastic bag forever! Do they make compostable ones, at least?
I do understand the desire for data. I get the instinct that the only responsible choice is one that conforms to expert opinions and follows the science. We are a data-driven society. Who doesn’t love hard facts? We live our lives by data: steps taken, hours slept, calories burned.
But there are no hard facts here. Or hard poops.
Every radiologist who looks at my scans says something different. One says there’s one lymph involved: 6mm, large-ish for a lymph, I’m told. A second pair of eyes sees a second lymph. A third doctor says he sees both lymphs, but that the layer of fat around each is untouched by cancer. Doctor Two says they’re way too small for Doctor Three to say that with confidence. I’m not sure what to think.
The only way to be sure is with pathologic staging, which involves cutting out my rectum.
And here we are again, right back where we started, with everyone desperate for a piece of this ass.
I wish I could make a data-based choice. But there is no bankable data, and I am not a number. I am a person.
I am the data and the data is me.
All I can do is follow my heart and my best instincts, which tell me it’s too soon for surgery.
Also, girl1, if your poops are weird then get that shit checked ASAP.
A brief publishing note to say that several of these next few posts were written between 2/13 and 2/14, while I was in Boston on a post-scan quest for a treatment plan. I have since arrived at a firm conclusion and pressed “go” with my chosen care team, but the next few blurts were written before any decisions had been finalized. I don’t want to overburden all your inboxes by sharing content on the five-essays-a-day pace at which I’m vomiting onto my screen, so I’ve staggered things out over the next week or so. I hope for past to catch up with present very soon.
Girl is a gender-neutral term. It is known.