September first of last year was the first time I interacted with an oncologist. I did not understand what it meant to have two seperate teamns at this point. Was it a second opinion? Did I have to pick one or the other? I don't think what actually happened ever really occured to me, I was so profoundly ignorant that I didn't even know what questions to ask (even though I hadn't yet had a chance to ask the important questions - what is my treatment plan (a phrasing I've only learned recently), what is my prognosis, what does the next month, six months, year, etc., look like for me (and even if it maked sense to ask about some of those timeframes).
I had two oncology teams working together. They knew about each other from day one (even if communication was sometimes slow between them), they were working together (or at least towards a shared purpose). It was a tag-team treatment plan, two courses of chemotherapy then surgery, the whole time. I needed to give positive, written consent at every stage, but other than saying "yes, I want to undertake this treatment, knowing that it has risks, but is also the standard of care and the best/only chance to have anything approaching a normal lifespan. I had little say in things, ie I didn't have to pick one plan or another, because, again, there was always just the one plan.
I wish all this had been made clearer to me back then. Not the specifics about treatment, obviously, or even prognosis, because you actually have to have met your oncologist to learn that information. But if someone had said "you're going to be seeing a doctor in Barrie and a surgeon in Toronto, they'll be working together with you for your treatment" then a lot of confusion would have been evaporated, and I really couldn't stand the extra stress at that point in my life. But maybe it was obvious to most people that they'd work together on a unified plan. I've never cared for hospital dramas, I don't see this sort of thing in media very often.
Now, I sit on the other side of that treatment plan. The chemo part was extremely successful, shrinking the CT visible tumors and getting me to surgery, and if not for the pesky unknown prostate tumor, surgery was on track to be successful as well (its impossible to know, but from the surgeon's report everything else they found could have been attempted, there are still fail states down that path, but that is also where all the success states are located). Sometime soon I'll have to restart chemotherapy, which I have complex feelings about, but at least none of those feelings are the confusion I felt in 2022.
By now, last year, I had met with the surgeon who I had been referred to for abdominal pain. On the 30th I'd get the first CT scan, the one that missed or miss characterized everything, ultimately delaying treatment for a couple months.
Which doesn't matter. Those months would have only saved me pain (which would have been nice, obviously) but would not have changed any of the treatments or the outcomes, or anything else about my diagnosis. I'd long wondered if this was the case, or if these months were critical time lost.
Friends, I have read the surgical report for my unfortunate cytoreduction and HIPEC procedure, and it's doom was assured months before I ever sought medical attention for pain.
Going into the laparoscopic surgery a few weeks ago, we knew of a large (2.6x4.6x3.8 mm) goblet cell adenocarcenoma on the appendix, another infiltrating the umbilicus, which had been mostly destroyed by chemotherapy, and a bunch of small tumors on the peritoneum. The laparoscopic surgery found further small tumors on the small intestine and confirmed what the CT scans had indicated. All of this was extremely operable and I had genuine reason to believe I could be in the roughly 10% of patients who never have the cancer return, although I was still much more likely in the roughly 70-80% of people who get a good result from the surgery (this is where the prognosis of 5-10 years came from). For me, the hard part, the part where I'd get rejected, was in the lead up to the operation. Once I got onto the table, I was set.
The deep pelvic area, with its collection of renal and reproductive organs, is apparently very difficult to visualize through CT scans. Ultrasounds are better, but you need a reason to do an ultrasound, and they're still not perfect. And I'd even gone to a urologist, we did a cystocapy, and from the inside my urethra, prostate and bladder looked perfect.
But I still had a tumor growing there. It's infiltrated my rectum (no symptoms yet) prostate (restricting urethra some of the time, making urination difficult) and seminal ducts (a variety of sexual symptoms, none catestrophic). Possibly more. There was no way to cleanly and safely remove it. They tried. Which puts me in the roughly 10% of HIPEC patients who are found to be inoperable during the procedure. I've still not properly processed this fact.
One of the things that makes appendix cancers so dangerous is that you almost never find them on purpose, like you might with breasts or testicular cancer. A large number of cases are found during appendectomies (which is actually the treatment for stages 1-3). But if it doesn't happen to inflame the appendix, you'll go years, maybe even a decade, before its noticed. Which, for me, means there are no surgical options. There's only chemotherapy.
I don't know when I start again, apparently you heal your surgical wounds before you restart, and I don't know my prognosis, but I know it isn't 5-10 years. But I do know I'm still here, now, and intend to have a very good summer.
From the comments
James Petrosky: I missed the come back around - my doom was assured because the pain (naval, spread from appendix) and difficulty urinating (spread to prostate region) predate me asking for help by many months. By the time I had my first symptom, it was already too late for HIPEC. Sometimes we can do everything right and still lose. I'm still going to try and do it right, though, statistically that'll work out for most of us.
I had an appointment with the surgical oncology team at Mt Sinai this morning and the news is good: they agree that the CT scan results were positive and that we're still on track for the HIPEC surgical option.
I'm on cycle 9, and have three more cycles to go until another CT scan. If the surgical team likes my progress, I'll remain on chemotherapy for as many cycles as it takes to be scheduled for laparoscopic surgery, a major stepping stone on the way to the HIPEC surgery I hope for.
Right now my two biggest fears are that either I fall ill in my immunocompromised state, and miss treatments and get scheduling all screwed up (I've worries about my health more intrinsically, too, but they're not relevant here) and that the ongoing pandemic floods hospitals with patients, and elective surgeries like mine are cancled again. I don't even go through drive through's without an N95 mask on, so at least I'm doing my best to control what little I can.
From the comments
James Petrosky: I included some less positive stuff out of a need to tell a complete story, but this is genuinely good news. The surgical team is a lot more experienced at looking at the specific sort of cancer I have. The medical oncology team at the Royal Victoria Regional Health Centre is extremely skilled, but the way Ontario organizes cancer treatment means that the central institutions have the expertise. So it's confirmation of a thing that was itself confirmation of how I'm feeling, but also tremendously exciting and good news.
Just six to eight more weeks until the next update, which is hopefully more of the same.
James Petrosky: To rain down a bit again, nothing is guaranteed. I'm a good candidate for HIPEC, but that doesn't make it a sure thing. And the surgery itself isn't necessarily curative, and in the vast majority of cases gives the recipient extra time.
I'm choosing to focus on that small curative chance, but I never let myself forget that it's all up to the fates. It's the only way to stay emotionally level.
