I have a small mass - what should/can I do other than wait?

My tumor was very small and they were able to diagnose it as something that would grow and need to be removed. (it was only after the surgery that it was diagnosed as cancer)

Not sure which doctor you're going to but maybe an oncologist or someone who really knows how to search the scans for cancer would be beneficial. If you're far from a major center you could ask if you can send them over.

Hi aluminex.  I was in a similar position to you in December, 2013.  After a routine physical, I got a call from my PCP that microscopic traces of blood were found in my urine test.  He referred me for a CT scan at the local hospital thinking it would turn out to be kidney stones.  Instead, they found a small lesion (1.5cm).  About a week later, they did an ultrasound that found nothing, then did another CT, this time supposedly with contrast, that seemed to find the lesion again.  But since they messed up with the contrast, they couldn't be certain if it was malignant.  During this whole time, I was going crazy with panic about the disgnosis on the initial CT scan.  At that point, my PCP said I should check with a urologic oncologist.  He said my insurance offered three possible referrals. One was to the hosptal that screwed up the CT with contrast, so I said no.  The second was to a decent hospital up in San Francisco (about 20 miles from me).  The thrid was Stanford University Hospital and Clinics.  I don't think he got past the "Stan" part when I screamed out "YES".  He put in for the referral and by the time I got home, Stanford had called me to schedule the appointment.  I was asked if I had a doc in mind and, of course, I did not, so I got pot luck.  My pot luck turned out to be an absolutely fantastic gentleman who took his time explaining everything and explaining my options in a way that even I could understand.

He said that the standard of care for lesions as small as ours was active observation, meaning that every six months or so, I would have another CT or ultrasound to see if there were any changes.  He also said that if I had a hard time psychologically accepting what was potentially inside me, he could arrange to take it out (he himself is not a surgeon or a interventional radiologist).  But he said that since there was still a chance that it was not malignant, he didn't want to reduce my kideny function unless it was absolutely shown to be malignant.  I asked about potential growth and potential spread and he said that lesions of this type are typically very slow growing and do not spread very often.  Having undergone a couple of surgeries in my past for stomach related issues, I wasn't anxious to have the surgery, so I opted to go with the observation.

Fast forward to April, 2016.  Recall that the original lesion was estiamted at about 1.5cm.  An ultrasound in April, 2016 indicated that it was 1.8cm.  Given that it had grown, albeit very little, my doctor said it was time for it to come out.  At that time, we discussed robotic surgery and ablation.  The statistics he gave me were that ablation had a success rate (meaning no cancer five years later) of about 95%, while the surgery had a 99+% success rate.  Despite my discomfort about yet another surgery (based on my prior history), I opted for the robotic procedure.  The ablation would have killed the cancer, but it would have left the remains inside me.  I just wanted the damn thing out.

So, in June, 2016, I was schedueld for a procedure that would start at 3PM.  I got to the hospital at noon and got all prepped and was rolled in a little late, as the previous procedure ran a little long.  Despite what my wife tells me was a fire alarm about half way through my procedure, everything went well and I was in a room with one of our nieces screaming in my ear to wake up around 8PM.  Having nothing better to do and wanting to stop the screaming, I woke up.  I had a little while of peace and then the nurse asked me to get up.  I was warned that they try to get you mobile very quickly after surgery and they weren't kidding.  I walked/stumbled around for about five or ten minutes, then flopped back down in bed and fell asleep.  I had no fluid restrictions, so I drank two of those plastic containers of water during the night.  I had a catheter so I didn't have to worry about urination (although the catherter is, to my mind, one heck of a sadistic piece of medical equipment that HAD to be invented by a woman because no man would put another through that).  I woke around 6 and was famished, so with no eating restriction, I ate breakfast and waited for the docs to see me.  They came in around 8 (the entire team other than the surgeon) and said everything had gone very well.  The lesion turned out to be about 1.7cm and was diagnosed in the OR as chromophobe RCC (later verified through pathology).  They told me chromophobe was typically very slow growing, rarely, if ever, spread and rarely, if ever, recurred.  So I felt pretty good about that.  They told me that if my pain was under control and I could pee on my own, I could leave.  The catheter came out (and I proposed marriage to the nurse that got it out), and asked if I could start walking.  She helped me the first round and then I was off to the races.  About an hour later (still walking), I peed and told her, so arrangements were made to spring me.  The surgeon came in just before noon and reiterated what the rest of the team had told me.  They removed the drain from my abdomen (which didn't hurt coming out, but just felt a little odd), patched me up and sent me on my way.  As I said, I arrived at the hospital at 12 noon and I was released the next day at 1:30PM, so I spent a total of 25-1/2 hours in the hospital.  I have a very high pain threshold, so my experience is not the same as many others will tell you.  I didn't take any pain meds at all (even Tylenol) and all I felt was a bit of a pulling sensation at the various incision sites.

So that's my story.  I'm told the vast majority of kidney malignancies are found when they're looking for something else.  That was my case, and it sounds like it's yours.  If (and it's still a big if) your lesion is found to be malignant, just remember that medical science has advanced even more since my operation in 2016.  And at the size that this last CT scan showed (1.1cm), it's emminently treatable.

aluminex said:

Thank you

Bay Area Guy

 

Thank you for the words of encouragement.  It helps more than you know!  I am hopeful that this is nothing.

I do have symptoms of pain on my right side, but I was told by my urologist that something this small would not be the cause of my symptoms, so we are looking at other causes.

I didn't have any pain, but when I asked the urologic oncologist if the blood in the urine was a symptom of RCC, he said sometimes, but he didn't think that was the case with me.  What was particularly odd about my situation was that I never had blood in the urine before and, in the 2-1/2 years between diagnosis and treatment, I never had it again, despite having three other urine tests during that time.  I know it's probably silly to say, but my parents passed away in 2010 (mom) and 2011 (dad), and I really do think that they found a way to keep looking out for me.  I have no other explanation for it, nor do I want one.

All of us on the board know what you're going through, and each and every one of us will help in any way we can.