Trust

Oh yeah!  My surgeon, although he is a fantastic surgeon, wanted to do nothing more than a chest X-Ray @ 6 months....said he got everything and for me to just continue on and don't worry about a thing.  I thought, being fat, dumb and happy to be alive, that I was probably a stage 1, grade 1, since he said he got it all.  Well. Yeah, he got the whole kidney and the ureter....just neglected to tell me that it had invaded waaay far into the renal vein and the sinus fat, and some of those suckers snuck out through the renal vein and into the rest of my body.  So now, after I cancelled my 6 month appointment with him and consulted with an oncologist, they ran a chest/abdomen/pelvic CT......found some areas of concern, ran a skull- base to mid-thigh PET scan, and now I am scheduled for an MRI on my right pelvis/hip/femur because it lit up like a Christmas tree.  After that, they will tackle the bilateral lung hot spots.  Surgeons seem to have a "God" complex and if they removed the entire tumor, they "got it all".  You need to see an ONCOLOGIST, preferably one who specializes in RCC, to take care of you.  Right now, even before the MRI, my oncologist is consulting with other oncologists about what treatment will be best for ME, not best for his "statistics".  I don't mean to be a downer, but you really need to take a proactive attitude in your treatment and your recovery...and unless the surgeon is also a urological/RCC oncologist, find one ASAP.  I had to pull every bit of information out of my surgeon like pulling wisdom teeth, even to what type of RCC I had!!  They don't want to tell you anything.  Okay, off my soapbox and back to reading.  Best of luck to you and hope your scans are all clear.

GPF said:

Thanks Angec.... Nothing

Thanks Angec.... Nothing popped on the report (as far as I know). I've wondered about getting copies of the reports. My GP advised against it because I'm a bit obsessive and I will look into every word and detail and always find the worst possible scenario. The upcoming scan is a tri phase scan. Apparently it gives a 3d view. I'm 42 and have had cysts on both my kidneys as long as I can remember. Always have had stone issues but only in the left kidney. This is the first issue with the right. When I called the surgeon (levine cancer center in charlotte and urologic cancers is what he specializes in) he advised me that the PA really shouldn't have simply said what he said without a filter. He explained that he had the the clinical experience to understand the reports. He further explained that the para aortic node showed up because of the surgery. Apparently internally the healing is taking a bit longer than  he expected. 

I did see an oncologist and he said that now that I "no longer have RCC" I don't need an onologost and that the doc I have now is more than qualified.

 

 I had a ct scan with and without contrast 

GPF.. It is good that nothing glowed.  He also gave you a satisfactory answer regarding the node that showed up. And, you always had cysts.  Ok, now i am relieved to hear this. Any type of cyst will be watched on a regular basis. Here are some thoughts of mine.  Just my opinion.

1. The Oncolgist that said "you no longer need him".... I will find another one!

2. I would still get all of the reports. It is fine to go over the reports thouroughly until you have a satisfactory answer. Then when you do, you stop obsessing.  I translate his comment into "if you get the reports you will continue to bother me until you find out everything."  Get the reports and keep it in a file!

3. Don't obsess. It looks like it is being taken care of and now that you know that nothing "lit" up it is all good!

TillieSOK said:

Oh yeah!  My surgeon,

Oh yeah!  My surgeon, although he is a fantastic surgeon, wanted to do nothing more than a chest X-Ray @ 6 months....said he got everything and for me to just continue on and don't worry about a thing.  I thought, being fat, dumb and happy to be alive, that I was probably a stage 1, grade 1, since he said he got it all.  Well. Yeah, he got the whole kidney and the ureter....just neglected to tell me that it had invaded waaay far into the renal vein and the sinus fat, and some of those suckers snuck out through the renal vein and into the rest of my body.  So now, after I cancelled my 6 month appointment with him and consulted with an oncologist, they ran a chest/abdomen/pelvic CT......found some areas of concern, ran a skull- base to mid-thigh PET scan, and now I am scheduled for an MRI on my right pelvis/hip/femur because it lit up like a Christmas tree.  After that, they will tackle the bilateral lung hot spots.  Surgeons seem to have a "God" complex and if they removed the entire tumor, they "got it all".  You need to see an ONCOLOGIST, preferably one who specializes in RCC, to take care of you.  Right now, even before the MRI, my oncologist is consulting with other oncologists about what treatment will be best for ME, not best for his "statistics".  I don't mean to be a downer, but you really need to take a proactive attitude in your treatment and your recovery...and unless the surgeon is also a urological/RCC oncologist, find one ASAP.  I had to pull every bit of information out of my surgeon like pulling wisdom teeth, even to what type of RCC I had!!  They don't want to tell you anything.  Okay, off my soapbox and back to reading.  Best of luck to you and hope your scans are all clear.

Tillie, I for one, love when you get on one of your soap boxes...I seems I learn something new from you everytime.  And, your story is what has inspired me to seek the care of an oncologist vs just the urlogist (who only wants to do a chest x-ray).  So, thank you for helping me learn through your trials and tribulations!

I am determined to find a doctor that will do a PET scan.  Not sure if it's as simple as just asking for one or if it has to be deemed medically necessary per my BCBS.  Still looking for a doctor in my area, but not having much luck.  You'd think I lived in BFE, as much trouble as i'm having!