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NED today :)

NewDay's picture
NewDay
Posts: 182
Joined: May 2012

Hi Everybody,

Got results of my Chest, abdomen, and pelvis scans today (all without contrast). My first scan was 3 months ago and surgery almost 8 weeks ago. My oncologist said he ordered these as a post-surgery baseline.

I'm looking for opinions on a few things. A couple of these are for MedScanMan and the rest to everyone that wishes to contribute.

MedScanMan,

There were a couple of incidental findings on my report that I'm not really worried about because I googled them and they don't sound important. But, what I'm wondering is, if these were on the prior scan, why would the radiologist not mention them? Is it likely he overlooked them or does the radiologist not look in detail at areas that are not related to the doctor's stated reason for the scan? The scan where my tumor was discovered was for GI problems. Or should I assume these are new developments? Or none-of-the-above?

To anyone who would like to contribute:

I asked my Oncologist whether my future scans would be with contrast. He said "That's a good question. There is always a concern about the one kidney. We can see how your bloodwork looks then and discuss it. I may alternate." My next scan will be in December. My creatinine is currenly 1.6. I'm looking for advice on how to weigh the risk against the benefit. I assume that a scan without contrast could miss some small mets or is that wrong? I remember that the PA at my Urologist's office said it wasn't important to find mets when they are tiny because they don't treat mets until they reach a certain size anyway (don't remember the size. She just demonstrated with the tip of her finder). After the December scan, I go to every 6 months. If he alternates the use of contrast each time, I think it means I could walk around with mets for almost a year before they are discovered. I'm just wondering how I will decide whether to lobby for or against contrast. As a reminder, although my tumor was only stage 2, it was Grade 4 unclassified renal cell carcinoma with 30-40% necrosis which all indicate it was a very aggressive tumor.

Anybody?

Kathy

MedScanMan's picture
MedScanMan
Posts: 108
Joined: Jul 2012

I remember that the PA at my Urologist's office said it wasn't important to find mets when they are tiny because they don't treat mets until they reach a certain size anyway (don't remember the size. She just demonstrated with the tip of her finder).

I don't know if I've ever heard a more uninformed statement made. We all have different thoughts about PA's.....some of those thoughts are whether that position in the field of medicine should have ever been thought up. I'm not going to get carried away here Kathy. I will say that with a creatinine of 1.6 nobody is going to inject you. You might bring it down to 1.4 or below by hydrating yourself very well for a few months. Always drink lots of water. Sometimes the doctor will want the contrast so badly he'll have you lie on the CT table for about an hour just to hydrate you with normal saline in an IV drip. Then do the contrast exam. Many things are missed when no contrast is given. But you certainly don't want to find yourself in renal failure because of a CT scan. My suggestion is to talk to your doctor about an MRI instead. Even without IV contrast the MRI will pick up more and if they decide to do the MRI with and without.....well gadolinium used for MRI contrast is much less nephrotoxic than Iodine contrast for CT.

Hope that helped a little
Jeff

OH.....Congrats on your NAD report. :)

DDBurkhardt
Posts: 13
Joined: May 2012

I went to my urologist on Friday for a 3 month check-up. I had a full radical nephrectomy of my left kidney w/a 4.8 tumor on 5/22/12. The doctor advised that he does CT scans one year after surgery. Everything that I have read says either 3 or 6 months after surgery. He advised me that I am cancer free and there is no need for a 6 month scan. Has anyone else waited a year for their 1st scan.

I am also a diabetic and worry about the one kidney I have left.

Can anyone offer any advice on this situation.

Thanks

Debbie

adman's picture
adman
Posts: 268
Joined: Jul 2012

Congrats!!

icemantoo's picture
icemantoo
Posts: 1660
Joined: Jan 2010

Kathy,

Keep up the good work.

Icemantoo

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Hear, hear iceman.
Kathy, you've got another plus with Jeff on your side. You've tackled your situation intelligently and it's paid the dividends you deserve.

MedScanMan's picture
MedScanMan
Posts: 108
Joined: Jul 2012

For the life of me I can't figure what you guys mean when you type NED. NAD has always been the abbreviation for No Active Disease. I'm going to feel stupid here but somebody please tell me what the E stands for. For the correct answer I’ll help interpret the next 100 imaging scans free of charge.

Jeff

foxhd's picture
foxhd
Posts: 2066
Joined: Oct 2011

Jeff, No EVIDENCE of disease. We are trying to have everyone add this to their name. Good for you! keep it that way New Day!

MedScanMan's picture
MedScanMan
Posts: 108
Joined: Jul 2012

Thank you Fox. Still waiting to hear you MRI results. Only good thoughts here.

Jeff

foxhd's picture
foxhd
Posts: 2066
Joined: Oct 2011

Jeff, I've got a copy of my MRI but haven't wanted to look at it yet. I wanted to enjoy the long weekend first. Second of all, whether it was my last infusion or the addition of zometa, the bottom line is that I have had less pain in the past week than I have had in a couple months. So, perhaps I am improving and maybe I won't have the radiation. I'll wait till this coming week and I'll get it all sorted out. I am no longer in a panic about my future. It does feel a little strange to say that but I can wait. Now I'm thinking about what I'll be doing when I'm as old as Wedgie and Iceman. Thanx for your concerns.

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Huh, you kids! In a few weeks time I'll be in my 70s and iceman will only be in his 60s.

Great to hear that you've sailed into clear waters. Still want to hear about that MRI report though. Tell you what, I'll swap you with an account of my next CT scan.

MedScanMan's picture
MedScanMan
Posts: 108
Joined: Jul 2012

Well...whenever you do decide to go over the impression, I'm hoping for nothing but good stuff. In the meantime since you're having less pain please send those percocets to
Post Office Box.......................only kidding.

Jeff

NewDay's picture
NewDay
Posts: 182
Joined: May 2012

Fox,

I too am counting on a good report from you, but even if it holds challenges, I know you're up to it.

On looking forward to getting as old as Tex and Iceman who is close to his 60's, I discovered something I wasn't prepared for. There were 3 incidental findings on my CT scan that appear to have nothing to do with cancer, but when I googled all three, each one is apparently common in the elderly. Elderly? When did that happen? My 87 year old mother is elderly. I haven't been able to find an actual definition of elderly, but I can't believe it starts at 59. Well, cancer or no cancer, I look forward to becoming even elderer... or elderlier... or more elderly. If I got my Mom's genes, I've got at least 28 more years to go. I expect to see you guys still here then too.

Kathy

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

That's a deal then Kathy! Once again, I have to confess how I'm dreading middle age!

Limelife50's picture
Limelife50
Posts: 420
Joined: Nov 2011

Just a thought,i was thinking why dont you request a PET SCAN of your chest no contrast needed and i think it might give you peace of mind

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

I think I know Mike well enough by now to know he's a decent guy who takes every opportunity to try to help others and therefore that his suggestion to Kathy is meant to be a helpful idea.

However, when one looks at Kathy's picture, it's difficult not to laugh at the idea of a PET scan of her chest!!

Mike, if I'm being crass and it was a joke on your part, I apologise. Either way it reflects well on you - either a tension-relieving bit of fun, or a possibly helpful suggestion. If it was the latter, put my perception down to my warped sense of humour.

Limelife50's picture
Limelife50
Posts: 420
Joined: Nov 2011

Yes you know me well TEX but this time i had good intentions,oh and by the way please do not get too relaxed OLE TEX you will always be on my hit list

adman's picture
adman
Posts: 268
Joined: Jul 2012
Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

adman, I wish you'd warned us you were about to disappear!
I bet Gary will be along any minute with a crack about ageing and firing blanks :)

adman's picture
adman
Posts: 268
Joined: Jul 2012

...I went back and deleted, then re-posted on the "grading" thread where I originally wanted to.
- I'm always up for a good age joke to remind me I'm about to hit 50! :)

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