Post-op follow-up programme -- advice please

lbinmsp said:

Hello and Happy New Year!
Sounds like you are well on the road to a full recovery - that's GREAT news!

OK - first thing - get your own copy of the pathology report. My urologist/surgeon told me that I should always get my own copies of all scans and reports in the event I needed or wanted to get a 2nd opinion or go to another doctor for any reason (no delay in waiting for them to get your reports). Also, don't give your copies away - let them make their own copies and give yours back to you.

Questions to ask - what was the size of the tumor, grade and type (although this will be on your copy of the path report as well), were there clear margins, any lymph node involvement. Also talk to him about use of OTC's (Tylenol, Aleve, Advil, etc.) as all of these have shown to be of issue to your remaining kidney. If you have chronic pain from - say arthritis - you may have to work together to find something else to use.

Next discuss your followup schedule. I was followed every 3 months with CT scans and blood work for the first year - then that changed to every 6 months which kept up until my 5th year - then annually. Now, if your tumor was small (say less than 4 cm) - your doctor may move directly to a 6 month followup plan. Personally I would opt for the 3 month / 6 month type of schedule as RCC is one very sneaky disease and really needs close followup for a while.

Keep on keeping on - you sound like you're doing great and that you have a good attitude! That's HUGE!
Keep posting - and let us know how you progress.

LB

Advice on questions at first follow-up
LB thank you for your fast and helpful reply. I'll make sure I come away with all the documentation they can give me. Before my op. my urologist surgeon, my Wife and I studied the CT scans thoroughly. I also wanted to collect info. on my visceral fat deposits and their locations (I don't have much, which was what I hoped would be confirmed) and spinal alignments. CT is especially good (compared with MRI which is superior for soft tissue imaging) at showing bone images. After a lot of rowing and weightlifting I suspected problems and we did see considerable wear on one intervertebral disc in particular. The consultant was very happy to indulge me this way and will, I'm sure, take on all the questions I choose to ask.

I'm amazed to see I forgot to mention that my tumour was 8cm. at the scan a few weeks before the op. As Jamie says, they often turn out to be larger when the chips are down and that might explain why they had to switch midstream to open and why there was so much bleeding. At first meeting, I asked if the mass was a Bosniak IV cyst and he said, slightly reluctantly (I think because he feared I might wrongly suspect the worst) "If you want to use that classification then, yes." So, I guess I'll now get the lowdown on the grade and type in terms of the classification you have in mind.

Perhaps what I've been told so far implies clear margins. CT had covered all major abdominal organs and showed no mets. Tumour being at the bottom it was planned that no lymph nodes would be excised, nor the adrenal gland.

I'm lucky in that (this aside!) I'm never ill, have no allergies, take no medications and have no chronic pain. I've been counselling others on this thread to avoid NSAIDs and I reckon after another 2 days I'll cease taking any painkillers. (The occasional tablet for the odd muscle pull or the short term combat of twinges from old sports injuries won't do me any harm, I believe.)

I'll opt for 3 month checks and I suspect that's what I'll be offered. Forgot to say I'm 69.

iceman, I suppose they'll likely check me out for 5 years or so but maybe only 6 monthly after year 1 and then tapering more later on? They will do bloodwork and scans and have all the technologies. Do you have any idea whether CT, MRI, sonograms, PET, or whatever would be most useful, or is this something that will be decided only after observing my progress in recovering?

Mike - noted. We have a younger cousin (of my WIfe) who's currently, to our deep grief, dying of liver cancer in London so I'll take no chances of impairing my liver.

Jamie, I'm still celebrating your good news. I'll be sure to keep all my records. I tend a bit towards OCPD and like collecting data so that will come naturally!

Thanks again, everyone and any more thoughts will still be appreciated. I'm now resigned to the fact that, at almost 70, I may only have another thirty or forty years to live, but I'm not kidding myself that it might not all go horribly wrong sooner, RCC being so capricious and unpredictable, but we're all fighters here. Like foxhd says: Ain't nothing gonna break my stride.

I tried to transmit this hours ago but it didn't go - can't work out why. Anyway, I had ended by quoting Fox and, voila! he adds another bit of good advice, for which my thanks my friend. Now I'll try send again!