NED today :)

Options
NewDay
NewDay CSN Member Posts: 272
in Kidney Cancer #1
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

Comments

  • MedScanMan
    MedScanMan CSN Member Posts: 107
    #2
    Contrast
    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. :)
  • adman
    adman Member Posts: 336
    #3
    Great news....

    Congrats!!
  • icemantoo
    icemantoo CSN Member Posts: 3,362
    #4
    adman said:

    Great news....

    Congrats!!

    NED
    Kathy,

    Keep up the good work.


    Icemantoo
  • Texas_wedge
    Texas_wedge CSN Member Posts: 2,798
    #5
    icemantoo said:

    NED
    Kathy,

    Keep up the good work.


    Icemantoo

    NED
    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
    MedScanMan CSN Member Posts: 107
    #6
    Texas_wedge said:

    NED
    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.

    So now I've got a question
    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
    foxhd CSN Member Posts: 3,181 Member
    #7
    MedScanMan said:

    So now I've got a question
    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

    NED
    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
    MedScanMan CSN Member Posts: 107
    #8
    foxhd said:

    NED
    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!

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

    Jeff
  • DDBurkhardt
    DDBurkhardt Member Posts: 13
    #9
    MedScanMan said:

    Contrast
    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. :)

    When to have your 1st CT after surgery
    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
  • foxhd
    foxhd CSN Member Posts: 3,181 Member
    #10
    MedScanMan said:

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

    Jeff

    MRI
    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
    Texas_wedge CSN Member Posts: 2,798
    #11
    foxhd said:

    MRI
    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.

    MRI
    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
    MedScanMan CSN Member Posts: 107
    #12
    foxhd said:

    MRI
    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.

    Oh those reports
    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
    NewDay CSN Member Posts: 272
    #13
    MedScanMan said:

    Oh those reports
    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

    Growing Old
    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
    Texas_wedge CSN Member Posts: 2,798
    #14
    NewDay said:

    Growing Old
    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

    Growing old
    That's a deal then Kathy! Once again, I have to confess how I'm dreading middle age!
  • Limelife50
    Limelife50 CSN Member Posts: 476
    #15
    Hi Kathy
    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
    Texas_wedge CSN Member Posts: 2,798
    #16
    Limelife50 said:

    Hi Kathy
    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

    Hi Kathy
    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
    Limelife50 CSN Member Posts: 476
    #17
    Texas_wedge said:

    Hi Kathy
    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.

    I Meant a Lung PET SCAN
    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
    adman Member Posts: 336
    #18
    Limelife50 said:

    I Meant a Lung PET SCAN
    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
  • Texas_wedge
    Texas_wedge CSN Member Posts: 2,798
    #19
    adman said:


    adman, I wish you'd warned
    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
    adman Member Posts: 336
    #20
    Texas_wedge said:

    adman, I wish you'd warned
    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 :)

    Posted on the wrong thread....
    ...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! :)
  • teastman
    teastman Member Posts: 5
    #21
    I don't trust the blood work with this type of cancer

    I recently had a partial nephrectomy 8/30/17 and found just found out 6 weeks later the final on the biopsy report that my tumor was unclassified renal cell carcinoma. I am waiting on the pathology report to see the furhman rating and necrosis. In January I had bloodwork done that noted all of my kidney function and levels were normal and healthy. This also could have been that I was stage 1. I had a CT scan in Feb where I learned I had a spot on kidney from my gastroenterologist that needed to be looked at. I was then referred to a urologist and had an MRI done in June where I found out my tumor was most likely cancerous and needed to be removed. The only thing that came back on the bloodwork was that I had a vitamin D deficiency which I thought was unusual since I get lots of sun and even take a vitamin D supplement daily. 

Discussion Boards