Post-nephrectomy annual follow ups?

RichGtr
RichGtr Member Posts: 12
I had a radical nephrectomy Aug 30, 2010. I am coming up on my second anniversary!

I'm in a slightly odd situation, doctor-wise. My wife works in an MRI center, and we found the mass on my kidney, as I was being a guinea pig for them to tweak their MRI protocols. The radiologist at her MRI center told me to get it checked out. My brother-in-law is a radiologist, and he said it was likely kidney cancer-- make an appointment with a urologist.

Urologist ordered a CT scan. Confirmed likely kidney cancer, and scheduled surgery. Surgery went well. One followup to urologist to remove the staples, and he advised me to have an annual CT for the next 5 years. Since then, the urologist moved out of state to join another practice, so he is pretty much out of the picture.

This all happened totally outside of my regular doctor. I rarely went to the doctor, anyway.

Last year, the first anniversary of my surgery, I needed an order to get the CT scan, so I went to my doctor for that. CT was clean, nothing of note or interest.

Now as I approach my second anniversary, I'm wondering about the wisdom of subjecting myself to that heavy dose of radiation (CT). Which is the bigger risk-- not finding something, or the radiation itself causing damage/cancer?

At this point, no one will remind me, or schedule a CT, unless I initiate it.

What has everyone else's post-nephrectomy annual (for 5 years) follow up regimen been?

Comments

  • garym
    garym Member Posts: 1,647
    Follow ups...
    Hi Rich,

    Much depends on the pathology report, size, type, stage, grade, etc. when determining the need and frequency for follow up vs the risk. That said, you would be hard pressed to find anyone with a better pathology than mine from nearly 3yrs ago. I had ct at 6mos, 1yr, 2yr, and will have my 3yr this fall after my doc told me last year that he didn't feel I needed another, but I felt I needed it for peace of mind. There is a member here who had clean scans until the 5th and bingo it came back, then she was clear until year 10 and it came back again. My advice, find a good doctor, go over your case in detail with him/her, and make an informed decision that gives you the most peace of mind, and remember, RCC is a sneaky devil.

    Best wishes,

    Gary
  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    CT follow-up protocols
    Rich, 2 stage reply - a few quick thoughts plus a couple of questions the answers to which will prepare the way for more knowledgeable members here to give you fuller answers.

    Being your own advocate and taking charge of your destiny is vital. You've already recognised that, which is why you're here.

    The dose of radiation you get from the latest generation of CT scanners is not as heavy as you may be fearing. For a lot of people, the dye used for contrast in the imaging is more of a hazard than the radiation exposure. Many of us here are getting CT with contrast every 6 months, or 3 months (me for instance) and in some cases every 6 weeks or so.

    Most of the general guides to KC will give you a good summary. There are many relevant academic articles you could look at, of which this is a not bad one:

    http://www.ajronline.org/content/191/4/1220.full

    For better advice here, you need to tell us a bit more about yourself. First your path report essentials from your nephrectomy - stage, grade and size of tumour and the RCC sub-type. The other main factors could be your age and your general health and kidney function level.

    Some of us here are so antique and/or have such advanced disease that we won't live much longer anyway, so the radiation and contrast risks aren't of much importance. If you're a lot younger, the radiation and contrast risks take more thinking about BUT they are probably well worth it anyway to catch anything nasty that might come along earlier rather than later. Over a 5 year follow-up period you won't be shipping vast quantities of radiation.

    So, please give us the information I've mentioned and someone better equipped will be able to give you more authoritaive answers.

    PS 2 days ago, someone wrote about her husband:
    "He gets a CAT and a bone scan every 12 weeks. He also gets a double study MRI of his spine every 12 weeks since he has mets there. I know when I read the CAT scan reports, they don't seem to mention the bone lesions in as much detail, if at all, as the other two scans he gets."
    I guess they're not too much bothered about the risks from the scans! But then his situation is VERY different from yours!
  • icemantoo
    icemantoo Member Posts: 3,360 Member

    CT follow-up protocols
    Rich, 2 stage reply - a few quick thoughts plus a couple of questions the answers to which will prepare the way for more knowledgeable members here to give you fuller answers.

    Being your own advocate and taking charge of your destiny is vital. You've already recognised that, which is why you're here.

    The dose of radiation you get from the latest generation of CT scanners is not as heavy as you may be fearing. For a lot of people, the dye used for contrast in the imaging is more of a hazard than the radiation exposure. Many of us here are getting CT with contrast every 6 months, or 3 months (me for instance) and in some cases every 6 weeks or so.

    Most of the general guides to KC will give you a good summary. There are many relevant academic articles you could look at, of which this is a not bad one:

    http://www.ajronline.org/content/191/4/1220.full

    For better advice here, you need to tell us a bit more about yourself. First your path report essentials from your nephrectomy - stage, grade and size of tumour and the RCC sub-type. The other main factors could be your age and your general health and kidney function level.

    Some of us here are so antique and/or have such advanced disease that we won't live much longer anyway, so the radiation and contrast risks aren't of much importance. If you're a lot younger, the radiation and contrast risks take more thinking about BUT they are probably well worth it anyway to catch anything nasty that might come along earlier rather than later. Over a 5 year follow-up period you won't be shipping vast quantities of radiation.

    So, please give us the information I've mentioned and someone better equipped will be able to give you more authoritaive answers.

    PS 2 days ago, someone wrote about her husband:
    "He gets a CAT and a bone scan every 12 weeks. He also gets a double study MRI of his spine every 12 weeks since he has mets there. I know when I read the CAT scan reports, they don't seem to mention the bone lesions in as much detail, if at all, as the other two scans he gets."
    I guess they're not too much bothered about the risks from the scans! But then his situation is VERY different from yours!

    Follow up
    While annual CT for 5 years is within the range of standard you need a doctor to follow up and not a GP. You need a Urologist specialising in Kidney cancer or an Oncologist as they may also follow up with your blood work as well. Perhaps you can get a referral from the Urolgist that left.

    Icemantoo
  • Digger95
    Digger95 Member Posts: 59

    CT follow-up protocols
    Rich, 2 stage reply - a few quick thoughts plus a couple of questions the answers to which will prepare the way for more knowledgeable members here to give you fuller answers.

    Being your own advocate and taking charge of your destiny is vital. You've already recognised that, which is why you're here.

    The dose of radiation you get from the latest generation of CT scanners is not as heavy as you may be fearing. For a lot of people, the dye used for contrast in the imaging is more of a hazard than the radiation exposure. Many of us here are getting CT with contrast every 6 months, or 3 months (me for instance) and in some cases every 6 weeks or so.

    Most of the general guides to KC will give you a good summary. There are many relevant academic articles you could look at, of which this is a not bad one:

    http://www.ajronline.org/content/191/4/1220.full

    For better advice here, you need to tell us a bit more about yourself. First your path report essentials from your nephrectomy - stage, grade and size of tumour and the RCC sub-type. The other main factors could be your age and your general health and kidney function level.

    Some of us here are so antique and/or have such advanced disease that we won't live much longer anyway, so the radiation and contrast risks aren't of much importance. If you're a lot younger, the radiation and contrast risks take more thinking about BUT they are probably well worth it anyway to catch anything nasty that might come along earlier rather than later. Over a 5 year follow-up period you won't be shipping vast quantities of radiation.

    So, please give us the information I've mentioned and someone better equipped will be able to give you more authoritaive answers.

    PS 2 days ago, someone wrote about her husband:
    "He gets a CAT and a bone scan every 12 weeks. He also gets a double study MRI of his spine every 12 weeks since he has mets there. I know when I read the CAT scan reports, they don't seem to mention the bone lesions in as much detail, if at all, as the other two scans he gets."
    I guess they're not too much bothered about the risks from the scans! But then his situation is VERY different from yours!

    Follow-up protocols
    Rich,

    I'm twelve years out now and still have an annual CT scan, as well as a chest x-ray and comprehensive blood panel. At one point I was worried about the radiation exposure since abdominal CT's give a pretty hefty dose in comparison to other types of x-rays but I've since stopped worrying about it. I figure I've had over 15 CT scans now which raises my cancer risk by an additional 1%... but as my risk for lung cancer or a late recurrence of kidney cancer is much higher than that I will continue to have them. My doc did stop ordering contrast after the five year mark though.

    Jim

    Stage I, 5cm, right kidney, clear cell renal cell carcinoma, July 2000.
  • adman
    adman Member Posts: 336
    Digger95 said:

    Follow-up protocols
    Rich,

    I'm twelve years out now and still have an annual CT scan, as well as a chest x-ray and comprehensive blood panel. At one point I was worried about the radiation exposure since abdominal CT's give a pretty hefty dose in comparison to other types of x-rays but I've since stopped worrying about it. I figure I've had over 15 CT scans now which raises my cancer risk by an additional 1%... but as my risk for lung cancer or a late recurrence of kidney cancer is much higher than that I will continue to have them. My doc did stop ordering contrast after the five year mark though.

    Jim

    Stage I, 5cm, right kidney, clear cell renal cell carcinoma, July 2000.

    cool....

    I was also a 'Right' 5.0 CC-RCC - July, 2012. I had a FULL.
    Stage 1 & all margins were clear as well....you?
  • Digger95
    Digger95 Member Posts: 59
    adman said:

    cool....

    I was also a 'Right' 5.0 CC-RCC - July, 2012. I had a FULL.
    Stage 1 & all margins were clear as well....you?

    Same here...
    Radical nephrectomy, everything removed but the kitchen sink.
  • Digger95
    Digger95 Member Posts: 59
    Digger95 said:

    Follow-up protocols
    Rich,

    I'm twelve years out now and still have an annual CT scan, as well as a chest x-ray and comprehensive blood panel. At one point I was worried about the radiation exposure since abdominal CT's give a pretty hefty dose in comparison to other types of x-rays but I've since stopped worrying about it. I figure I've had over 15 CT scans now which raises my cancer risk by an additional 1%... but as my risk for lung cancer or a late recurrence of kidney cancer is much higher than that I will continue to have them. My doc did stop ordering contrast after the five year mark though.

    Jim

    Stage I, 5cm, right kidney, clear cell renal cell carcinoma, July 2000.

    Follow-up protocols
    Rich,

    I forgot to say congratulations on your two year anniversary! Feels pretty good doesn't it?

    Jim
  • RichGtr
    RichGtr Member Posts: 12
    Digger95 said:

    Follow-up protocols
    Rich,

    I forgot to say congratulations on your two year anniversary! Feels pretty good doesn't it?

    Jim

    Thanks for all the replies.
    Thanks for all the replies. Lots of good information to consider! Thanks also for the anniversary well wishes!

    I should remember the details of the pathology report better than I do. I'll have to dig the report up. I might have that info in a post around here. I benefited from this site in the days before and after my surgery.

    What I remember is Renal Cell Carcinoma. Stage I. Took my entire left kidney and adrenal gland. Saw no evidence of spreading beyond the kidney. Don't remember the tumor size. Surgery was hand-assisted laproscopic. Don't recall the subtyping info from the path report, without looking it up.

    Even before the urologist moved away, it seemed like he was done with me once I'd recovered from surgery. He had a great reputation, largely because he did many, many nephrectomies. But this also meant that he was something of an assembly line operation. And once you were past his part of the line, so long.

    When I asked my GP to order a CT scan for my first anniversary, it was kind of weird.

    He was more concerned with my borderline hypertension (140/90). Kind of a whole other story, but I think hypertension is over-diagnosed, over-treated, and over-medicated. Well since then, I have dropped 24 lbs, and I'm just under the line for overweight (5'-6" and 155 lbs). I wasn't terribly overweight by today's standards, but dropping the weight brought my bp down to around 120/80. I also run 5k once or twice a week, and do some weight training. So, long story short, I brought the hypertension down with diet and exercise. I've limited salt intake forever. I really even don't like salty food. But this is all 'take care of the kidney' stuff rather than watching for additional cancer.

    As I read the responses, sounds like a CT per year is pretty average for someone in a lower risk (no spreading) scenario. I had not heard that new CT machines gave a lower dose of radiation. That is good to know. I have an image in my mind of a CT scan being a very large dose of radiation.

    Thanks, and best wishes to you all!
  • RichGtr
    RichGtr Member Posts: 12
    RichGtr said:

    Thanks for all the replies.
    Thanks for all the replies. Lots of good information to consider! Thanks also for the anniversary well wishes!

    I should remember the details of the pathology report better than I do. I'll have to dig the report up. I might have that info in a post around here. I benefited from this site in the days before and after my surgery.

    What I remember is Renal Cell Carcinoma. Stage I. Took my entire left kidney and adrenal gland. Saw no evidence of spreading beyond the kidney. Don't remember the tumor size. Surgery was hand-assisted laproscopic. Don't recall the subtyping info from the path report, without looking it up.

    Even before the urologist moved away, it seemed like he was done with me once I'd recovered from surgery. He had a great reputation, largely because he did many, many nephrectomies. But this also meant that he was something of an assembly line operation. And once you were past his part of the line, so long.

    When I asked my GP to order a CT scan for my first anniversary, it was kind of weird.

    He was more concerned with my borderline hypertension (140/90). Kind of a whole other story, but I think hypertension is over-diagnosed, over-treated, and over-medicated. Well since then, I have dropped 24 lbs, and I'm just under the line for overweight (5'-6" and 155 lbs). I wasn't terribly overweight by today's standards, but dropping the weight brought my bp down to around 120/80. I also run 5k once or twice a week, and do some weight training. So, long story short, I brought the hypertension down with diet and exercise. I've limited salt intake forever. I really even don't like salty food. But this is all 'take care of the kidney' stuff rather than watching for additional cancer.

    As I read the responses, sounds like a CT per year is pretty average for someone in a lower risk (no spreading) scenario. I had not heard that new CT machines gave a lower dose of radiation. That is good to know. I have an image in my mind of a CT scan being a very large dose of radiation.

    Thanks, and best wishes to you all!

    Forgot to add, I am 56, and
    Forgot to add, I am 56, and in very good health. Probably best condition in decades.
    Eat healty and exercise.

    I work a sedentary office job, and the combination of 'lack of activity' and poor diet had been taking their toll. But I turned the corner on that, and got my blood pressure under control (without meds) in the bargain.
  • RichGtr
    RichGtr Member Posts: 12

    CT follow-up protocols
    Rich, 2 stage reply - a few quick thoughts plus a couple of questions the answers to which will prepare the way for more knowledgeable members here to give you fuller answers.

    Being your own advocate and taking charge of your destiny is vital. You've already recognised that, which is why you're here.

    The dose of radiation you get from the latest generation of CT scanners is not as heavy as you may be fearing. For a lot of people, the dye used for contrast in the imaging is more of a hazard than the radiation exposure. Many of us here are getting CT with contrast every 6 months, or 3 months (me for instance) and in some cases every 6 weeks or so.

    Most of the general guides to KC will give you a good summary. There are many relevant academic articles you could look at, of which this is a not bad one:

    http://www.ajronline.org/content/191/4/1220.full

    For better advice here, you need to tell us a bit more about yourself. First your path report essentials from your nephrectomy - stage, grade and size of tumour and the RCC sub-type. The other main factors could be your age and your general health and kidney function level.

    Some of us here are so antique and/or have such advanced disease that we won't live much longer anyway, so the radiation and contrast risks aren't of much importance. If you're a lot younger, the radiation and contrast risks take more thinking about BUT they are probably well worth it anyway to catch anything nasty that might come along earlier rather than later. Over a 5 year follow-up period you won't be shipping vast quantities of radiation.

    So, please give us the information I've mentioned and someone better equipped will be able to give you more authoritaive answers.

    PS 2 days ago, someone wrote about her husband:
    "He gets a CAT and a bone scan every 12 weeks. He also gets a double study MRI of his spine every 12 weeks since he has mets there. I know when I read the CAT scan reports, they don't seem to mention the bone lesions in as much detail, if at all, as the other two scans he gets."
    I guess they're not too much bothered about the risks from the scans! But then his situation is VERY different from yours!

    Great article! Thanks.

    Great article! Thanks.
  • RichGtr
    RichGtr Member Posts: 12
    RichGtr said:

    Great article! Thanks.

    Great article! Thanks.

    Does everyone have CTs, or
    Does everyone have CTs, or possibly some other imaging, such as MRI? My wife works in an MRI center, and suggests MRI, as opposed to CT, because of the radiation. You know the saying, "When you have nothing but a hammer, everything looks like a nail."

    My initial 'find' was via MRI. But I recall, the Urologist wanted the CT scan to base his diagnosis on.
  • donna_lee
    donna_lee Member Posts: 1,024 Member
    RichGtr said:

    Does everyone have CTs, or
    Does everyone have CTs, or possibly some other imaging, such as MRI? My wife works in an MRI center, and suggests MRI, as opposed to CT, because of the radiation. You know the saying, "When you have nothing but a hammer, everything looks like a nail."

    My initial 'find' was via MRI. But I recall, the Urologist wanted the CT scan to base his diagnosis on.

    MRI problems
    I think the CT with dye is the first choice for follow up. Then use of ultrasound w/wo chest xray if there had been any mets to an organ higher in the abdomen.

    The "problem" with is that you cannot have one if you have metal inside your body. And generally, with any type of nephrectomy there are surgical clips left for sealing blood vessels. Looks like a closed staple out of your desk stapler. Add to that any other metal plates, heart pacemakers, or ortho items. The metal gets hot and reacts to the magnet.

    Personally, I'm on alternating CT and US/Xray at 3-6 month intervals.
    Donna
  • ourfriendjohn
    ourfriendjohn Member Posts: 72
    RichGtr said:

    Does everyone have CTs, or
    Does everyone have CTs, or possibly some other imaging, such as MRI? My wife works in an MRI center, and suggests MRI, as opposed to CT, because of the radiation. You know the saying, "When you have nothing but a hammer, everything looks like a nail."

    My initial 'find' was via MRI. But I recall, the Urologist wanted the CT scan to base his diagnosis on.

    CTs or
    Rich,

    I was diagnoised with a CT but my first (6 month) post-op scans ordered by the urologist were MRIs of the abdomin and pelvis and a chest x-ray. I just met with an oncologist on Monday, however, and he wants CTs of the chest, abdomin, and pelvis this time around (one year). He did not think the radiation was anything that the body could not recover from. Likewise, my creatinine level of 1.3 seems ok for CT contrast as well. I am happy that they will be using a more sensitive tool to look for any mets in my lungs. My wallet will be happier with the CT's too.

    John
  • RichGtr
    RichGtr Member Posts: 12
    donna_lee said:

    MRI problems
    I think the CT with dye is the first choice for follow up. Then use of ultrasound w/wo chest xray if there had been any mets to an organ higher in the abdomen.

    The "problem" with is that you cannot have one if you have metal inside your body. And generally, with any type of nephrectomy there are surgical clips left for sealing blood vessels. Looks like a closed staple out of your desk stapler. Add to that any other metal plates, heart pacemakers, or ortho items. The metal gets hot and reacts to the magnet.

    Personally, I'm on alternating CT and US/Xray at 3-6 month intervals.
    Donna

    AFAIK I have no metal clips.
    AFAIK I have no metal clips. Never told to not have MRIs, due to metal. This was my only surgery, so no chances other chances for internal metal.

    I recall that during my initial diagnosis, the Urologist wanted the CT, with contrast, even though we (incidentally) had MRI of it. Possibly because that was what he was used to working with. Or, perhaps CT is better in that application.
  • RichGtr
    RichGtr Member Posts: 12

    CTs or
    Rich,

    I was diagnoised with a CT but my first (6 month) post-op scans ordered by the urologist were MRIs of the abdomin and pelvis and a chest x-ray. I just met with an oncologist on Monday, however, and he wants CTs of the chest, abdomin, and pelvis this time around (one year). He did not think the radiation was anything that the body could not recover from. Likewise, my creatinine level of 1.3 seems ok for CT contrast as well. I am happy that they will be using a more sensitive tool to look for any mets in my lungs. My wallet will be happier with the CT's too.

    John

    Thanks John! So, you've had
    Thanks John! So, you've had both CT and MRI ordered. I know MRIs are usually considered a more costly exam. I'm probably due to have my creatinine level checked again.

    Best wishes and clean followups to you! Today is my 2nd anniversary.
  • ourfriendjohn
    ourfriendjohn Member Posts: 72
    RichGtr said:

    Thanks John! So, you've had
    Thanks John! So, you've had both CT and MRI ordered. I know MRIs are usually considered a more costly exam. I'm probably due to have my creatinine level checked again.

    Best wishes and clean followups to you! Today is my 2nd anniversary.

    Congratulations on 2 years
    That's great Rich. My one year anniversary is September 7th. At Kaiser, MRI's are about twice the cost of CT's ($2200 v $1100 for abdominal and pelvis). You are lucky to "have a friend in the MRI business". I hope your scans continue to be cancer free.

    John
  • nyc_girl
    nyc_girl Member Posts: 27

    Congratulations on 2 years
    That's great Rich. My one year anniversary is September 7th. At Kaiser, MRI's are about twice the cost of CT's ($2200 v $1100 for abdominal and pelvis). You are lucky to "have a friend in the MRI business". I hope your scans continue to be cancer free.

    John

    My doctor's follow-up plan (for now)
    I had Stage 1, Grade 3 clear cell RCC. Open partial nephrectomy in January 2012 at age 43.
    6-month post op: Abdominal Ultrasound + chest x-ray (NED)
    1-year post op planned: Abdominal and Chest CT
    After 1 year, Doc expects future scans to be mostly ultrasound + chest x-ray.
  • jason n
    jason n Member Posts: 12
    Digger95 said:

    Follow-up protocols
    Rich,

    I'm twelve years out now and still have an annual CT scan, as well as a chest x-ray and comprehensive blood panel. At one point I was worried about the radiation exposure since abdominal CT's give a pretty hefty dose in comparison to other types of x-rays but I've since stopped worrying about it. I figure I've had over 15 CT scans now which raises my cancer risk by an additional 1%... but as my risk for lung cancer or a late recurrence of kidney cancer is much higher than that I will continue to have them. My doc did stop ordering contrast after the five year mark though.

    Jim

    Stage I, 5cm, right kidney, clear cell renal cell carcinoma, July 2000.

    flank pain
    Hi Jim,
    I also am 12 years out from a left kidney laproscopic nephrectomy (RCC). surgery was christmas of 2000. I have had periodic pain where the kidney was since the surgery, mainly after very vigorous activity, but it has been increasing over the past couple of months and it does not take much activity to set it off. Kinda a dull ache that I can not get away from in any position, sitting, standing or lying down.
    Of coarse I am concerned that the sneaky rcc is trying to return and I have a scan on the books for the 18th of this month. It will be my first scan in 5 yrs as my doctor said I have nothing to worry about. Well I am worried and I am wondering if you ever experience pain in your flank area after physical activity.
    I also was stage 1-2 with a 4 cm encapsulated tumor, clear margins. 43 years old (now).
    I have always been fairly thin, but recently lost about 15 lbs by cutting out the junk in my diet.
    I am hoping this somehow is the source of my increase in pain. My febal little non-doctor mind is thinking that the surgical clips are digging into some nerves/interior flesh and causing this soreness at the end of the day.
    Please let me know your thought when you have time and congrats on being a long term survivor,,, lets keep on keepin on !!!!

    Thanks
  • Digger95
    Digger95 Member Posts: 59
    jason n said:

    flank pain
    Hi Jim,
    I also am 12 years out from a left kidney laproscopic nephrectomy (RCC). surgery was christmas of 2000. I have had periodic pain where the kidney was since the surgery, mainly after very vigorous activity, but it has been increasing over the past couple of months and it does not take much activity to set it off. Kinda a dull ache that I can not get away from in any position, sitting, standing or lying down.
    Of coarse I am concerned that the sneaky rcc is trying to return and I have a scan on the books for the 18th of this month. It will be my first scan in 5 yrs as my doctor said I have nothing to worry about. Well I am worried and I am wondering if you ever experience pain in your flank area after physical activity.
    I also was stage 1-2 with a 4 cm encapsulated tumor, clear margins. 43 years old (now).
    I have always been fairly thin, but recently lost about 15 lbs by cutting out the junk in my diet.
    I am hoping this somehow is the source of my increase in pain. My febal little non-doctor mind is thinking that the surgical clips are digging into some nerves/interior flesh and causing this soreness at the end of the day.
    Please let me know your thought when you have time and congrats on being a long term survivor,,, lets keep on keepin on !!!!

    Thanks

    flank pain
    Jason,

    I apologize for not seeing your message sooner but I haven't been on the forum for a few days. I see that you started a separate thread with your question and hope that you get the advice and reassurance that you need.

    Jim