We met with the surgeon yesterday.
I had two visions of how it might go:
A) the fear – he’d tell us there had been a mistake with the PET scan and give us worst case scenario info
B) the hope – he’d tell us not to worry/everything is fine.
Neither of those things happened – and I’m ok with that. He largely confirmed everything we already knew. No surprises. We’re still in the godawful wait and see stage of the process.
One of our initial questions/concerns involved PET scan accuracy. According to the surgeon, they’re not perfect – but they’re accurate enough to move forward with surgery. The thing is – surgery would NOT be the first step if tumors had been located anywhere outside of the colon.
Right now, we’re working under the assumption that this is a localized situation vs. systemic disease based on the PET scan – but that could change.
The catch? The surgery will stop (the colon section and surrounding lymph nodes will not be removed) if they visually detect tumors on Jon’s liver once they begin. Chemotherapy will then become the first step since the tumor in Jon’s colon is not impacting his normal functioning (it’s 4cm, btw) and priority would be on the liver.
So. HIGH ANXIETY surrounding this surgery.
We won’t know the stage or the next steps until the pathology report is returned following surgery (up to a GD WEEK later). Right now, the lymph nodes aren’t lighting up on the PET scan – but we won’t know FOR SURE until they’re out and tested.
My understanding is that the typical progression = colon -> lymph nodes -> liver, so we’re hopeful the cancer will be a colon + lymph nodes thing ONLY if it turns out that the scan was inaccurate and it has begun to metastasize. If that happens to be the case, chemotherapy will follow surgery.
He gave us some other info. Tumor marker numbers and other things that I haven’t had time to wrap my mind around. We have an appointment with an oncologist this afternoon, so I guess we’ll get more details then – though I doubt there’s much new to hear until after surgery.
Best case scenario = continued lack of indication of metastatic disease. If that’s the case, surgery should cure him (after 5 years of no recurrence).
This the only option I’m willing to entertain at the moment.
Surgery is Wednesday morning. We were hoping for Monday – and let’s be honest – I was ready to cart him off RIGHT THEN – but we’ve been assured that everything will be ok (physically – maybe not MENTALLY) until Wednesday.
This whole thing is just … unbelievable.
It’s the craziest emotional roller-coaster I’ve ever experienced. I don’t even have words to describe the terror we feel or the shock or the crushing sadness or the disbelief or the anger or the RAGE I FEEL AT HOW FUCKING UNFAIR THIS IS.
I don’t know what we’re supposed to DO with ourselves. Just go on about our days like we aren’t experiencing the worst fear of our lives?
We truly appreciate the comments/concern/good thoughts/etc. We hadn’t told many people (just immediate family – it wasn’t even facebook official) when I posted the blog entry yesterday because I think we’ve been afraid of reactions. Or saying it too many times. Or something.
Jon was extremely touched that someone out there cares.
So. Thank you.