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This was interesting

rae_rae's picture
rae_rae
Posts: 300
Joined: Oct 2010

http://www.youtube.com/embed/8xPLvYZHFIs?list=PLEyXw_hOMY5Sld8RHgCXpaK4vZUWmQhNK

 

GSRon's picture
GSRon
Posts: 1304
Joined: Jan 2013

Great find..!!  I viewed most of them.. oer 30 presentations..   There is some knowledge for everyone for sure... I will give the warning, some of you may not like what you hear... on the other hand there are a few presentations that talk about success and more..  I was pleased to hear from one of the Doctors I have seen and a mention of my main Oncologist...   OK, for those that have not yet had surgery and are trying to decide on partial Vs radical, see #29.

I will need to revisit several of the presentations in order to truly understand the comments...

Thanks for posting..!!

Ron

gingersnaps
Posts: 67
Joined: Jul 2013

Could someone change that link so we can just tap onto it?  Thanks  I can't get it to open.

GSRon's picture
GSRon
Posts: 1304
Joined: Jan 2013

gingersnaps
Posts: 67
Joined: Jul 2013

I was able to get it now. Why to hospitals even Cleveland clinic still use Fuhrman when it is so outdated?

rae_rae's picture
rae_rae
Posts: 300
Joined: Oct 2010

I agree, some things we may not want to hear but we need to stay informed because knowledge is power. My oncologist wants yearly scans and after five years, he said I'm good to go. With a grade 3 stage two tumor with a great deal of necrosis, I am going to revisit my scan schedule. I found the remark that most stage two were in fact stage three- if I understood it right. I will have to listen again. Hope everyone had a good Thanksgiving. I am thankful for all of you!

 

Rae

GSRon's picture
GSRon
Posts: 1304
Joined: Jan 2013

Hi Rae.. as usual, it all depends..  I was late stage 3, and my Doctor pretty much knew more was to come.  So for me, 90 day scans was spot on.  Not sure all of your indicators, but if you can get scans twice a year may be a better method.  Amazing that some people are NED for many years before Mets show up..  Hopefully you remain NED forever..!

Ron

srbelle1
Posts: 123
Joined: Jul 2013

I will listen to the presentation again but I thought it was about grade, not stage. My husband has 90 day scan schedule and because of the stage 4, I think the excitement about the clean abdominal scans, there was probably an expectation of something which has left me with a sense of unease.

his path report never mentioned necrosis but the first MRI did; since the path was very thorough, my thought is it was probably the mistake that is often made that was referred to.

i agree that knowledge is power and wonder if maybe I am a bit Polyanna in hearing what I want to hear.

sarah

rae_rae's picture
rae_rae
Posts: 300
Joined: Oct 2010

I did watch it again a couple of times as it takes me a few times to understand it all (as best I can) and he did make a reference to stage regarding the renal sinus fat. Every case is different, just interesting information to pay attention to for pathology. I will have to dig out my path report to see if it mentioned renal sinus fat. For me, it's just reaffirming to keep up on my scans and to know the doctors do not always have the latest information. 

srbelle1
Posts: 123
Joined: Jul 2013

It is amazing, isn't it that we understand as much as we do without the medical training?

since my husband was dx with 2 spinal mets, we have always known it was stage IV; as for the grade, we didn't learn that until he had the radical nephrectomy and were surprised that it was grade 2.

the surgeon had guessed before the surgery that it was grade 3; the oncologist told us that no matter the grade or stage, the cancer will define itself as time goes on. Tough to be in the world of don't know but he told us that he has had stage 1, grade 1 come back with mets to the tongue because renal cancer is totally unpredictable. Actually, a stage 4, grade 2 is strange.

sarah

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