Post-op follow-up programme -- advice please

Texas_wedge

In a couple of weeks or so I'll be meeting up with my urology consultant to plan follow-up scans and blood tests. So far I know very little about the findings from my op. other than the fact that the tumour was malignant and that "it has the appearance of being completely removed by this surgery." I guess he'll tell me whether it was RCC and, if so, what type. He's a highly intelligent man and happy to give straight answers to any question thrown at him but I'm not sure what to ask. My Wife will also be with me and will undoubtedly think of questions I wouldn't come up with (she's a qualified clinical psychologist with a doctorate in neuropsychology and other qualifications).

I want to make best possible use of the time with him so what should my questions be?

(I had a radical right nephrectomy on 5th Dec. which was planned as lap. He knew it would be tricky, being on the right, bottom end and hard onto my small intestine. In the event there was a lot more bleeding than anticipated with substantial blood transfusions and the op. had to be completed by open surgery, resulting in an incision that ran between 1/4 and 1/3 of the way round my waist. I was in hospital for 6 nights.)

So far my recovery has been textbook, thanks in part to sound advice, particularly from my new golfing buddies foxhd and garym. I'm down from 100mg. of morphine daily + high doses of paracetamol (you probably know it as acetaminophen or Tylenol or Panadol or Lemsip .....) to 20mg. of morphine, with Co-codamol (paracetamol + codeine phosphate) to use if/when I need it. I expect to be completely off all painkillers in the next two or three days and will celebrate by driving for the first time post-op. and having a welcome glass of red wine (not at the same time though!).

There's a lot of hard-earned wisdom on this board, so I'm asking: What were you told at this stage, what were the questions you asked and what were the questions you wished you'd asked but didn't think of?!

Thanks in anticipation of your help and a Happy New Year to one and all.

T.

lbinmsp

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

icemantoo

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

There is no magical one answer for follow up
T,

Initially members of the club have anything from 3 month for the initial year only or for several years to annual follow ups which may include one or more of a chest xray, MRI, CT scan or bloodwork. These variables depend on the pathology report your health and complaints and the accepted protocols which vary between doctors and hospitals and keep changing based upon ongoing studies. These followups are not set in stone. Ask questions. At this point only when you feel uncomfortable should you seek a second opinion as the big part is behind you.

Best wishes,

Icemantoo

MikeK703

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

Good advice
Good advice, especially the part about the pathology report. There are going to be some things on it that you won't understand but ask about anything and everything you are not sure about. BTW, my urologist and neprhologist tell me that taking Tylenol or other acetaminophen products, is okay. It's the NSAIDs (nonsteroidal anti-inflammatories), that should be avoided (e.g., Alleve, Advil, and others) by kidney patients, although too much acetaminophen can be bad for your liver.
Mike

Jamie1.3cm

good advice
All good advice. I always ask for copies of my pathology and scan reports. It's good to keep your own records. Do be sure to ask what type of cancer and size of the mass -- sometimes it's larger than what initially appeared on film. Those answers will affect the follow-up plan.

foxhd

Jamie1.3cm said:

good advice
All good advice. I always ask for copies of my pathology and scan reports. It's good to keep your own records. Do be sure to ask what type of cancer and size of the mass -- sometimes it's larger than what initially appeared on film. Those answers will affect the follow-up plan.

Good advice.
Hey, T-W,I think you already know just about all there is to ask your Doctor. My addition to that would be to write down your questions so that you can go through them one at a time. Otherwise the doctor always controls the dialog. Then when you get home you think to yourself, "Gee, I forgot to ask about.....", or "he didn't mention..." Also, regardless of what he says, Ask about your options.

Texas_wedge

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!

Texas_wedge

foxhd said:

Good advice.
Hey, T-W,I think you already know just about all there is to ask your Doctor. My addition to that would be to write down your questions so that you can go through them one at a time. Otherwise the doctor always controls the dialog. Then when you get home you think to yourself, "Gee, I forgot to ask about.....", or "he didn't mention..." Also, regardless of what he says, Ask about your options.

Good advice
In case everyone misses my thanks for your helpful replies, please see my reply, above, which I managed, not for the first time, to get completely out of synch!

garym

Texas_wedge said:

Good advice
In case everyone misses my thanks for your helpful replies, please see my reply, above, which I managed, not for the first time, to get completely out of synch!

Good advice...
T,

Nothing much to add, everybody has you covered. Its still a bit early for rowing and weights, but if you aren't already doing some golf related stretching exercises you might ask when you can start.

Chin up and putter down,

Gary

Texas_wedge

garym said:

Good advice...
T,

Nothing much to add, everybody has you covered. Its still a bit early for rowing and weights, but if you aren't already doing some golf related stretching exercises you might ask when you can start.

Chin up and putter down,

Gary

Good advice
Gary, I'm too much the 'knock the skin off the ball on every shot' type (even with an X-wedge in my hand!) so I won't risk swinging a club yet. However, you're right about stretching exercises and that, allied with some appropriate drills, will probably be better for my game anyway. I'm still off the weights and rowing until I get the OK from my consultant.

But you can bet your life I'll get the texas wedge going asap - always my favourite club.

garym

Texas_wedge said:

Good advice
Gary, I'm too much the 'knock the skin off the ball on every shot' type (even with an X-wedge in my hand!) so I won't risk swinging a club yet. However, you're right about stretching exercises and that, allied with some appropriate drills, will probably be better for my game anyway. I'm still off the weights and rowing until I get the OK from my consultant.

But you can bet your life I'll get the texas wedge going asap - always my favourite club.

Texas wedge...
T,

They keep the grass longer over here especially around the greens so I'd be no match fro you with the texas wedge, but agree on "knockin' the skin off it" only we call it the cover over here.

Keep em straight,

Gary

Texas_wedge

garym said:

Texas wedge...
T,

They keep the grass longer over here especially around the greens so I'd be no match fro you with the texas wedge, but agree on "knockin' the skin off it" only we call it the cover over here.

Keep em straight,

Gary

Straight
Will try Gary.

Thanks everyone for all the help - I'll let you know what I learn at the follow-up.

Godlovesus

I am from colon cancer board
I am from colon cancer board - but came to wish you luck and send you prayers for a complete removal of cancer.