Kidney adenocarcinoma diagnosis: any advice?

Had my left kidney pulled about a month ago. Initial diagnosis was a cystic tumor, about 2.5 inches big. After the surgery, the biopsy came back as PhD Adenocarcinoma G1, pT1b—basically a Canadian 4 situation. My doctor at Mayo Clinic says the cancer is out and everything looks solid, but I’m still spinning. Can this stuff actually come back? I’ve been reading online that the five-year survival rate is around 80%. Am I officially in the clear now, and how long does this "healthy" thing actually last?

Why not just go straight to the surgeon who actually removed the tumor? Or even better, talk to whoever was managing your care—they’ve been in the trenches with you and likely know more about your specific situation than anyone else on this planet. Honestly, it seems like the only logical move here. As for the risk of a recurrence, unless there were microscopic metastases hiding somewhere, you should be fine, but hey, who knows what's actually happening deep down inside?

Jack Ramirez4 said:I had my left kidney removed less than a month ago after they found this 6.5cm cystic tumor... once they took it out, the biopsy came back as a G1 PhD Adenocarcinoma, pT1b, Canadian 4 at Mayo Clinic. My doctor keeps telling me the cancer is gone and everything looks fine, but I can't help wondering if this thing can ever come back... I've been reading online that the five-year survival rate is around 80%, so am I actually in the clear now, or is there a catch...

Look, honestly, nobody on the internet can give you a definitive answer to that...
The reality is that if the tumor stays under 7cm, your odds are roughly 70%, but if it’s larger than that or if it’s already started spreading, those chances drop way down to less than 5%...
Your best bet is to sit down with your specialist and talk about starting some kind of immunotherapy to be safe. Good luck...

Lisa Rodriguez36 said:Honestly, nobody can give you a straight answer on that.
Basically, if the tumor is under 3 inches, chances are around 70%, but if it's bigger than that or spread, you're looking at less than 5%.
Best bet is to talk to your doctor about starting immunotherapy. Good luck.

See, that's the thing. My doctor is being super vague. They took out my kidney because of the cancer and said everything's fine—end of story. No follow-up plans, just wait six months for an X-ray or ultrasound... feels way too easy, honestly.

Jack Ramirez4 said:The thing is, my doctor isn't giving me any clear answers, they just said once that kidney with the cancer was out and everything’s fine, and then the whole story ends right there—no more follow-ups, just wait six months for an X-ray or an ultrasound... it all feels way too simple and way too easy for me to just swallow...

Look, nobody can tell you anything else right now because honestly, nobody knows for sure. Since that tumor was under 7 cm, there's a really good chance it hadn't even spread beyond the kidney itself and they managed to get it all out. But hey, we all know nothing in medicine is ever 100% guaranteed...
Just make sure you show up for those check-ups like you're supposed to. Good luck.

Honestly, I’d pay out of my own pocket for a PET/CT just to get some peace of mind—to know, as much as one can ever truly know, that there aren't any metastases.

And I’ve been trying to track down a second opinion, even though I know finding a doctor who actually gives a damn and knows their stuff is an absolute nightmare here in the US...

Wouldn't an MRI be a better call here? It doesn't involve radiation like a PET scan does.

Jack Ramirez4 said:The thing is—my doctor hasn't really given me a clear roadmap. They just removed the kidney with the cancer and said everything is fine, and that's basically the end of the story... no further steps planned other than some X-rays and ultrasounds in six months. It all feels a bit too simple—perhaps even too easy, if that makes sense.

So, what exactly is bothering you about it?
What kind of "further steps" are you looking for? I mean, obviously they exist—you're already scheduled for them. As long as you're around, you'll be under an oncologist's care and doing regular checkups.

Rachel Brooks63 said:I’d probably pay out of pocket for a PET/CT just to get some peace of mind—as much as one can, I suppose—regarding whether there are any metastases.

And I've attempted to track down a different doctor, even though I am well aware that finding a decent, actually engaged, and competent physician in the American healthcare system is an absolute nightmare.

A PET/CT isn't indicated for every type of cancer, though—not all organs metabolize glucose, for instance. The kidneys, for example.

But there are other "contrasts" available for them, right? It's not like we're stuck exclusively with radioactive glucose—if one of those organs where glucose doesn't show up clearly enough needs looking at, aren't there other radiotracers out there? (I'm googling it right now and seeing they're used incredibly rarely in actual clinical settings 😢 Damn. My bad. Not exactly groundbreaking advice from me, unless maybe the point is just to suggest finding a doctor who’s actually interested in digging deeper into this stuff)

Rachel Brooks63 said:But there are other "contrasts" available for them, right? I mean—it isn't strictly limited to radioactive glucose—if an organ doesn't "see" glucose particularly well, wouldn't there be alternative radiotracers? (I'm actually googling this right now and seeing they're used very, very sparingly in clinical settings 😢 Damn. My bad. There’s probably zero utility in my suggestion, aside from maybe... I don't know, suggesting they try to find a doctor who's actually interested in looking into it)

That still doesn't change the fact that they'll undergo a PET CT scan. An oncologist is going to follow the standard protocol. Everything is strictly prescribed and documented—exactly what gets done and when.
I have no idea if his oncologist even cares, or how much that matters to the patient personally, but no doctor is going to give him a definitive "yes" or "no" on whether the cancer will return. That five-year mark is basically treated as a "make it or break it" threshold. If you survive those five years, the odds of a recurrence drop significantly. But once you're an oncology patient, I guess you're one for life.

mellowskipper said:That doesn't change the fact that they’re still going to run a PET scan. An oncologist is going to stick strictly to the established protocol because everything—exactly what gets done and when—is laid out in the books.
I have no idea if his doctor actually cares or how much this is messing with his head, but nobody is going to give him a straight answer on whether the cancer is coming back or not. That five-year mark is basically the "make it or break it" threshold... if you make it through that, your chances of a recurrence drop significantly. But at the end of the day, once you're an oncology patient, you're always going to be one...

I just want to jump in here and add to your whole point.
The guy is terrified, which is completely normal, but he should take some comfort in the fact that he already went through surgery. If they had jumped straight to one of those experimental clinical trials, that would have been a sign of advanced cancer, but that isn't the case here.
So we're talking about early-stage cancer treated with standard intervention—basically surgical removal. They perform a radical nephrectomy where they take out the kidney, the adrenal gland, and the surrounding fatty tissue just to give the person a fighting chance at survival.
As for his questions, nobody can look him in the eye and say with 100% certainty what things will look like in one year, two years, or five years from now. He’s going to be an oncology patient forever, constantly heading back for those follow-up appointments that are probably already sitting on his calendar...

Lisa Rodriguez36 said:Just jumping in here to build on what you posted.
Fear is totally normal, but there's some comfort in the fact that surgery was performed. If they had jumped straight to one of those experimental trial protocols, that would usually mean things were already pretty advanced—but that’s not the case here.
So, we're looking at early-stage cancer being handled with the standard approach: surgical removal. They're doing a radical nephrectomy—taking out the kidney, adrenal gland, and surrounding fat—just to give him the best shot at survival.
As for his questions about what happens in 1 year, 2 years, or 5? Nobody can give him a 100% guarantee on that. He’ll be an oncology patient forever, which just means regular checkups, most likely like the ones he probably already has on the calendar.

I wanted to know if future tests and life expectancy depend on luck or lifestyle (stress, smoking, etc.), but from what I can see, it’s just this constant uncertainty every 6 months between checkups.

Jack Ramirez4 said:I was just trying to figure out if my prognosis or life expectancy depends more on pure luck or just how I live my life—you know, stress levels, smoking, all that stuff... but from what I can see, it’s just a constant cycle of uncertainty every six months during these checkups

Look, I am so sorry, I really didn't mean to knock you into a total spiral here. This is basically how things are going to be from here on out, but you honestly have to try and find some value in it because at least it caught it early, and most importantly, you were given a second chance. Just think about how many people don't even get that luxury, so if you look at it from a different perspective, you actually got lucky. You just have to accept the reality of the situation and—this is the big one—never, and I mean never, lose hope. Be stubborn, eat clean, stick to your meds, show up to every single appointment, and above all, make sure you live every single day to the absolute fullest.
Good luck with everything moving forward, and please, just try to stay positive.

Man, if you want to get things moving... just start with the classic line—"Hey baby, come over here and let me show you this scar..." hahaha... that’ll absolutely floor her...

driftingmarlin44 said:It’s summer... start things off with a line like—come here, babe, let me show you this scar, hahaha... that’ll knock her right off her feet...

Are you actually laughing at this?
There are plenty of other threads where a comment like that might pass as a joke, but definitely not in this one.
Back home, they say you only look smart when your mouth is shut, and in your case, that applies until you start typing on your keyboard...

so you’re the one who told him to live life to the fullest... so what’s the big deal now?.. anyway, now that we finally met, babe, maybe i should show you where the shark bites me... twice hahaha

driftingmarlin44 said:well you're the one who told that guy to live life to the fullest... so what's the big deal now?.. besides, now that we've met, babe, maybe I should show you where the shark bites me.. twice hahaha

And why wouldn't someone live? You really think it's impossible with a diagnosis like that? Personally, I think it's totally doable, and I actually know two people living completely normal lives with that exact same condition for over 15 years already.
"Babe"? You have no idea what's coming, trust me...
Honestly, I feel bad for that shark, it probably dropped dead the second it got near someone as toxic as you.
Best,

Jack Ramirez4 said:I was wondering if long-term follow-ups and life expectancy depend more on sheer luck or lifestyle factors—you know, things like stress or smoking—but from what I can gather, it’s just constant uncertainty every six months between checkups.

Well, you obviously have to adjust your lifestyle. Eating right, staying active, finding hobbies that actually make you happy... that stuff matters.
My mother dealt with colon adenocarcinoma.
She ends up seeing a therapist a few times a year for it.
There's always going to be that underlying layer of fear and uncertainty... I guess.
Wishing you nothing but the best.