T1a survalence type and frequency?

BG
BG Member Posts: 85 Member
Hello everyone,

I am going to be going in to see my urologist to discuss survalence type and frequency for a T1a tumor that was removed laproscopically. I wanted to get feedback on what others have been told survalence type (chest x-ray, CT, US, MRI) and frequency (first year, years 2-5, and beyond).

Any information would be appreciated.

Thanks,

BG

Comments

  • icemantoo
    icemantoo Member Posts: 3,359 Member
    Follow uo
    BG,

    My surgery and siagnosis was 9 years ago and were both similar to yours. In year 1 I had each of these tests. In years 2-7 I had a CT scan. Last year I had an ultrasound. This year (next week) I am having an ultrasound, These test may or may not be similar to what your doctor orders. Please take this with a grain of salt.

    Icemantoo
  • Jamie1.3cm
    Jamie1.3cm Member Posts: 188
    surveilance
    Just a CT scan for me, with a window of no sooner than 6 months, no later than 1 year after surgery.
  • BG
    BG Member Posts: 85 Member
    icemantoo said:

    Follow uo
    BG,

    My surgery and siagnosis was 9 years ago and were both similar to yours. In year 1 I had each of these tests. In years 2-7 I had a CT scan. Last year I had an ultrasound. This year (next week) I am having an ultrasound, These test may or may not be similar to what your doctor orders. Please take this with a grain of salt.

    Icemantoo

    Thanks Icemantoo,
    Depending

    Thanks Icemantoo,

    Depending on where you read, there are several different follow up strategies. I will see how my urologist wants to evaluate and let the group know.

    BG
  • BG
    BG Member Posts: 85 Member

    surveilance
    Just a CT scan for me, with a window of no sooner than 6 months, no later than 1 year after surgery.

    Hey Jamie,
    Do they have a

    Hey Jamie,

    Do they have a plan post 1 year, yearly, then after year 2 every other year?

    BG
  • icemantoo
    icemantoo Member Posts: 3,359 Member
    BG said:

    Hey Jamie,
    Do they have a

    Hey Jamie,

    Do they have a plan post 1 year, yearly, then after year 2 every other year?

    BG

    A plan?
    BG,

    They may have a plan, but they are taloring that plan to you and your health from year to year. Meanwhile protocols change and the doctors have their own experiences as well as feedback from other doctors on what tests should and should not be given. There is no one size fits all. This is my perception after 9 years.


    Icemantoo
  • Minnesota Girl
    Minnesota Girl Member Posts: 119
    The universal - IT DEPENDS!
    Hi BG -

    As others have said, it is going to vary by patient and doctor. I had a T1a tumor removed July 6, Fuhrman grade 3. My urologist wanted an oncologist to oversee my future care, as I am only 43. The RCC oncologist is doing blood work and a contrast CT every three months for the first year, then perhaps 4 months/year, then 6, etc. I asked about a PET scan, but the doctor basically said it's overkill right now - we wouldn't be able to get it through on insurance, but he will push for it if he thinks we need it down the road.
  • rae_rae
    rae_rae Member Posts: 300

    The universal - IT DEPENDS!
    Hi BG -

    As others have said, it is going to vary by patient and doctor. I had a T1a tumor removed July 6, Fuhrman grade 3. My urologist wanted an oncologist to oversee my future care, as I am only 43. The RCC oncologist is doing blood work and a contrast CT every three months for the first year, then perhaps 4 months/year, then 6, etc. I asked about a PET scan, but the doctor basically said it's overkill right now - we wouldn't be able to get it through on insurance, but he will push for it if he thinks we need it down the road.

    Don't forget you have a say
    Don't forget you have a say in that plan, whether it's to say I don't think that is adequate or that is overkill. My urologists plan was chest xrays every three months for the first year. That wasn't enough for me so I suggested the ct scan, which my new dr. Thinks was a wise choice.
    Rae
  • garym
    garym Member Posts: 1,647
    rae_rae said:

    Don't forget you have a say
    Don't forget you have a say in that plan, whether it's to say I don't think that is adequate or that is overkill. My urologists plan was chest xrays every three months for the first year. That wasn't enough for me so I suggested the ct scan, which my new dr. Thinks was a wise choice.
    Rae

    Just CT's now
    I had chest x-rays and CT at 6 mos and 1 yr. then my urologist said that because my pathology report had been so positive and continued exposure to the effects of radiation from tests has its risks, that yearly CT's would be sufficient going forward. I think "The Plan" probably varies with each Dr. and patient and strongly agree that you should voice your concerns if you disagree either way.
  • MikeK703
    MikeK703 Member Posts: 235
    garym said:

    Just CT's now
    I had chest x-rays and CT at 6 mos and 1 yr. then my urologist said that because my pathology report had been so positive and continued exposure to the effects of radiation from tests has its risks, that yearly CT's would be sufficient going forward. I think "The Plan" probably varies with each Dr. and patient and strongly agree that you should voice your concerns if you disagree either way.

    On an annual basis now
    I am also T1a. Just had my second 6-month followup. Had chest x-rays and bloodwork on both visits. I've also had two ultrasounds of my remaining kidney because of a nephrologist's diagnosis of chronic kidney disease (a diagnosis my urologist does not agree with). Everything has been normal, including the higher creatinine levels, which he said are normal for somebody who has had a radical nephrectomy. He wants to see me in a year. Don't know if it will be an x-ray or CT. He had told me during my first follow-up visit that there would come a time when I would have to have a CT of my other kidney. I had a bone scan a few months after surgery because of bone pain that existed for nearly two years before the cancer was found. It came back negative except for some arthritis. He has offered another bone scan to put my mind at ease if I am still concerned about the pain, but as it hasn't gotten worse and I no longer worry about it, I said no. He's been very understanding and cooperative. Early on after surgery I asked if I would be seeing an oncologist. He said no, that he would be taking care of the follow-up (evidently a normal scenario for patients with small tumors like mine). But he offered an oncologist referral if I wanted one. I declined because I've been feeling very comfortable with him, especially lately. My provider is an HMO and over the last 10 years, and I have found them most agreeable when it comes to tests and referrals, not at all reflective of the negative reputation HMOs seem to have.
  • BG
    BG Member Posts: 85 Member
    MikeK703 said:

    On an annual basis now
    I am also T1a. Just had my second 6-month followup. Had chest x-rays and bloodwork on both visits. I've also had two ultrasounds of my remaining kidney because of a nephrologist's diagnosis of chronic kidney disease (a diagnosis my urologist does not agree with). Everything has been normal, including the higher creatinine levels, which he said are normal for somebody who has had a radical nephrectomy. He wants to see me in a year. Don't know if it will be an x-ray or CT. He had told me during my first follow-up visit that there would come a time when I would have to have a CT of my other kidney. I had a bone scan a few months after surgery because of bone pain that existed for nearly two years before the cancer was found. It came back negative except for some arthritis. He has offered another bone scan to put my mind at ease if I am still concerned about the pain, but as it hasn't gotten worse and I no longer worry about it, I said no. He's been very understanding and cooperative. Early on after surgery I asked if I would be seeing an oncologist. He said no, that he would be taking care of the follow-up (evidently a normal scenario for patients with small tumors like mine). But he offered an oncologist referral if I wanted one. I declined because I've been feeling very comfortable with him, especially lately. My provider is an HMO and over the last 10 years, and I have found them most agreeable when it comes to tests and referrals, not at all reflective of the negative reputation HMOs seem to have.

    go with the flow
    So I guess my motto will be "go with the flow". I have a feeling a urologist would likely say something different than a oncologist, so I will see next week when I meet with my urologist.

    I did have a consult with a RCC oncologist at Duke and he had a recomended sequence through 10 years if everything remained clear, time will tell and I remain positive.

    Thank you all for your feedback, suggestions, and being there for us all.

    BG
  • BG
    BG Member Posts: 85 Member
    BG said:

    go with the flow
    So I guess my motto will be "go with the flow". I have a feeling a urologist would likely say something different than a oncologist, so I will see next week when I meet with my urologist.

    I did have a consult with a RCC oncologist at Duke and he had a recomended sequence through 10 years if everything remained clear, time will tell and I remain positive.

    Thank you all for your feedback, suggestions, and being there for us all.

    BG

    met with urologist, differs from oncologist for follow-up
    So I met with my urologist today. He indicated, based on the T1a, grade 2 chromophobe, to have chest xray and blood tests 3 months post surgery, and scans at 6 months, and 12-18 months.

    Thats it. He said thats what is outlined in some urological survalience guideline or something like that.

    The oncologist I went to recomended every 6 months (scans) to 2 years, then 4 yrs, 7 yrs, 10 yrs scans.

    What a big difference. The urologist said the chances of recurrence are very low, but his survalience schedule makes me more uneasy than I already am.

    I am going to call my oncologist and have him send his recomendation to my MD and Urologist, and will follow up with the urologist on this after he gets the recomendation.

    Any thoughts?

    BG
  • BG
    BG Member Posts: 85 Member
    BG said:

    go with the flow
    So I guess my motto will be "go with the flow". I have a feeling a urologist would likely say something different than a oncologist, so I will see next week when I meet with my urologist.

    I did have a consult with a RCC oncologist at Duke and he had a recomended sequence through 10 years if everything remained clear, time will tell and I remain positive.

    Thank you all for your feedback, suggestions, and being there for us all.

    BG

    met with urologist, differs from oncologist for follow-up
    So I met with my urologist today. He indicated, based on the T1a, grade 2 chromophobe, to have chest xray and blood tests 3 months post surgery, and scans at 6 months, and 12-18 months.

    Thats it. He said thats what is outlined in some urological survalience guideline or something like that.

    The oncologist I went to recomended every 6 months (scans) to 2 years, then 4 yrs, 7 yrs, 10 yrs scans.

    What a big difference. The urologist said the chances of recurrence are very low, but his survalience schedule makes me more uneasy than I already am.

    I am going to call my oncologist and have him send his recomendation to my MD and Urologist, and will follow up with the urologist on this after he gets the recomendation.

    Any thoughts?

    BG
  • Minnesota Girl
    Minnesota Girl Member Posts: 119
    BG said:

    met with urologist, differs from oncologist for follow-up
    So I met with my urologist today. He indicated, based on the T1a, grade 2 chromophobe, to have chest xray and blood tests 3 months post surgery, and scans at 6 months, and 12-18 months.

    Thats it. He said thats what is outlined in some urological survalience guideline or something like that.

    The oncologist I went to recomended every 6 months (scans) to 2 years, then 4 yrs, 7 yrs, 10 yrs scans.

    What a big difference. The urologist said the chances of recurrence are very low, but his survalience schedule makes me more uneasy than I already am.

    I am going to call my oncologist and have him send his recomendation to my MD and Urologist, and will follow up with the urologist on this after he gets the recomendation.

    Any thoughts?

    BG

    what to do, what to do
    BG -

    Are you saying the oncologist wants to monitor you for a longer period of time? That's what I would go for. My RCC oncologist said I would have to go 15 years without any recurrence to be considered 'cured.' And, as we all know too well, the most important thing with our cancer is to find it as early as possible.

    The urologist knows how to find it, and get it out, but he/she also deals with lots of other non-cancer issues. In my opinion, the RCC oncologist is going to have more exposure to and experience with the best protocols for treating kidney cancer once the kidney is out. If a trial comes up, or a new preventive drug protocol is recommended, I feel like the RCC oncologist will be up on it.

    BUT, that's just my opinion! As my urologist said, he's the plumber - now I need an electrician. :)
  • BG
    BG Member Posts: 85 Member

    what to do, what to do
    BG -

    Are you saying the oncologist wants to monitor you for a longer period of time? That's what I would go for. My RCC oncologist said I would have to go 15 years without any recurrence to be considered 'cured.' And, as we all know too well, the most important thing with our cancer is to find it as early as possible.

    The urologist knows how to find it, and get it out, but he/she also deals with lots of other non-cancer issues. In my opinion, the RCC oncologist is going to have more exposure to and experience with the best protocols for treating kidney cancer once the kidney is out. If a trial comes up, or a new preventive drug protocol is recommended, I feel like the RCC oncologist will be up on it.

    BUT, that's just my opinion! As my urologist said, he's the plumber - now I need an electrician. :)

    agreed
    Hi Minnesota Girl, I totally agree. I will call my oncologist tomorrow and get him to provide recomendations to my MD and urologist.

    If the urologist wont monitor for a longer period the oncologist will.

    BG
  • newenglandguy
    newenglandguy Member Posts: 66

    The universal - IT DEPENDS!
    Hi BG -

    As others have said, it is going to vary by patient and doctor. I had a T1a tumor removed July 6, Fuhrman grade 3. My urologist wanted an oncologist to oversee my future care, as I am only 43. The RCC oncologist is doing blood work and a contrast CT every three months for the first year, then perhaps 4 months/year, then 6, etc. I asked about a PET scan, but the doctor basically said it's overkill right now - we wouldn't be able to get it through on insurance, but he will push for it if he thinks we need it down the road.

    Miinesota Girl - what Follow-up CT scan(s) did you have?
    Hi Minnesota Girl - what type of CT scan or scans did your oncologist recommend?
  • Minnesota Girl
    Minnesota Girl Member Posts: 119

    Miinesota Girl - what Follow-up CT scan(s) did you have?
    Hi Minnesota Girl - what type of CT scan or scans did your oncologist recommend?

    CT scans
    Newenglandguy - I will have my first contrast CT of the torso in November, along with some lab/blood work (and maybe a chest xray.) We'll do the CTs every three months the first year, then every 4 months for a year, every 6, etc. We have not done a PET scan, but I know some others have.