New renal cell carcinoma dx

RandaLeigh
RandaLeigh Member Posts: 15

Hey everyone. My renal mass was found incidentally by ct due to other issues. My doctor did not confirm a cancer diagnosis until after I had a left partial nephrectomy for a 2 cm mass. Pathology reports  show renal cell carcinoma. This is fever scary to me. I'm a 31 year old healthy mom of two. I'm still in shock really at my diagnosis. Can anyone shed any insight on what the course of treatment or the road ahead will hold for me? Thanks in advance.

«1

Comments

  • todd121
    todd121 Member Posts: 1,448
    Hi. Welcome.

    Sorry you've found yourself joining us. Can you share a more detailed reading of your pathology report? There should be staging and information about how agressive the tumor is in the pathology report. It would read something like T1NX MX Grade 2.

    Usually a tumor as small as yours (2 cm is pretty small), is Stage 1. The cure rate for nephrectomy for most Stage 1 tumors is over 90%, but you need to also look at your tumor grade and other information on your pathology report. The tumor grade has been shown to be an independent indicator of prognosis (somebody, if I'm wrong, please speak up).

    Did the doctor give you a prognosis?

    If it were me, and even with a small tumor like this, I'd find a good medical oncologist for a follow up. Ideally they'd have some RCC experience or if someone that knows a lot about RCC is nearby, I'd choose them and get a followup appointment. Definitely still do your follow ups even if you're given a great prognosis.

    Urologic oncologists are NOT medical oncologists. It took me awhile to get that. Urologic oncologists are urologists that are surgeons who specialize in removing (surgically) genitourinary tumors. Medical oncologists are specialists that normally have studied internal medicine or hematology and then have gone on to study and treat systemic cancer. Your urologist will probably want to follow you. However, I wouldn't do that unless I was low risk and there was nobody else better qualified to do it.

    You're most likely in one of the better categories for having what we have. So welcome to the club. Sorry you had to go through this.

    Wishing you the best,

    Todd

  • RandaLeigh
    RandaLeigh Member Posts: 15
    todd121 said:

    Hi. Welcome.

    Sorry you've found yourself joining us. Can you share a more detailed reading of your pathology report? There should be staging and information about how agressive the tumor is in the pathology report. It would read something like T1NX MX Grade 2.

    Usually a tumor as small as yours (2 cm is pretty small), is Stage 1. The cure rate for nephrectomy for most Stage 1 tumors is over 90%, but you need to also look at your tumor grade and other information on your pathology report. The tumor grade has been shown to be an independent indicator of prognosis (somebody, if I'm wrong, please speak up).

    Did the doctor give you a prognosis?

    If it were me, and even with a small tumor like this, I'd find a good medical oncologist for a follow up. Ideally they'd have some RCC experience or if someone that knows a lot about RCC is nearby, I'd choose them and get a followup appointment. Definitely still do your follow ups even if you're given a great prognosis.

    Urologic oncologists are NOT medical oncologists. It took me awhile to get that. Urologic oncologists are urologists that are surgeons who specialize in removing (surgically) genitourinary tumors. Medical oncologists are specialists that normally have studied internal medicine or hematology and then have gone on to study and treat systemic cancer. Your urologist will probably want to follow you. However, I wouldn't do that unless I was low risk and there was nobody else better qualified to do it.

    You're most likely in one of the better categories for having what we have. So welcome to the club. Sorry you had to go through this.

    Wishing you the best,

    Todd

    Thanks for the replies. I

    Thanks for the replies. I follow up with my urologist on Friday. The only report I got was via phone call that stated the tumor was a grade 1 renal cell carcinoma. I have read so much about recurrence and that is  what bothers me. I feel that this was caught very early but will find out the rest on Friday. 

  • icemantoo
    icemantoo Member Posts: 3,359 Member
    todd121 said:

    Hi. Welcome.

    Sorry you've found yourself joining us. Can you share a more detailed reading of your pathology report? There should be staging and information about how agressive the tumor is in the pathology report. It would read something like T1NX MX Grade 2.

    Usually a tumor as small as yours (2 cm is pretty small), is Stage 1. The cure rate for nephrectomy for most Stage 1 tumors is over 90%, but you need to also look at your tumor grade and other information on your pathology report. The tumor grade has been shown to be an independent indicator of prognosis (somebody, if I'm wrong, please speak up).

    Did the doctor give you a prognosis?

    If it were me, and even with a small tumor like this, I'd find a good medical oncologist for a follow up. Ideally they'd have some RCC experience or if someone that knows a lot about RCC is nearby, I'd choose them and get a followup appointment. Definitely still do your follow ups even if you're given a great prognosis.

    Urologic oncologists are NOT medical oncologists. It took me awhile to get that. Urologic oncologists are urologists that are surgeons who specialize in removing (surgically) genitourinary tumors. Medical oncologists are specialists that normally have studied internal medicine or hematology and then have gone on to study and treat systemic cancer. Your urologist will probably want to follow you. However, I wouldn't do that unless I was low risk and there was nobody else better qualified to do it.

    You're most likely in one of the better categories for having what we have. So welcome to the club. Sorry you had to go through this.

    Wishing you the best,

    Todd

    Prognosis

    Randa,

     

    At 2 cm barring the unforseen you will be followed ip with regular scans and hopefully no treatment for the rest of your life. How long is that?

    I am a young 70. Faye across the street is 83 and had her Neph at 64. With such an early start I would not be surprised if you were a 50 year survivor although I am scheduled to check out before that day.

     

    Icemantoo

  • cubsfan9
    cubsfan9 Member Posts: 69 Member

    Thanks for the replies. I

    Thanks for the replies. I follow up with my urologist on Friday. The only report I got was via phone call that stated the tumor was a grade 1 renal cell carcinoma. I have read so much about recurrence and that is  what bothers me. I feel that this was caught very early but will find out the rest on Friday. 

    Welcome!

    Good Morning!

    Sorry you have had to get this news.  However, 2 cm and grade 1 sound "good" and you will likely not need any further treatment.  You will, of course, learn more on Friday.  It will be important to follow up with regular CT scans to make sure there is no spread down the road because, as you have already read, kidney cancer can come back and mestastasize.  We will pray that yours does not.  Depending on what your doctor tells you you will likely need those scans every 6 months or perhaps once a year.  As was suggested earlier, an oncologist is the best one to guide you going forward.

    If it should come back you should know that there are several treatments that are quite effective and allow kidney cancer to be treated as a 'chronic disease'.  Be careful about what you read--there is a lot of outdated information in cyberspace!  A cancer diagnosis is beyond scary!!  There are good people on this board who will gladly answer questions and provide lots of encoragement.  Looking forward to hearing your GOOD report on Friday:)

  • dhs1963
    dhs1963 Member Posts: 513

    Thanks for the replies. I

    Thanks for the replies. I follow up with my urologist on Friday. The only report I got was via phone call that stated the tumor was a grade 1 renal cell carcinoma. I have read so much about recurrence and that is  what bothers me. I feel that this was caught very early but will find out the rest on Friday. 

    Grade 1 is good.

    SO, you had a tumor that was T1a, grade 1.  If you have to have cancer, that is what you want.  97-98 % with that are cured by the nephrectomy.  The CT scans will make sure you are not in the other 2-3%. 

    What you have is a small non-agressive tumor.  This should have minimal long term impact....

  • jknorth
    jknorth Member Posts: 44
    todd121 said:

    Hi. Welcome.

    Sorry you've found yourself joining us. Can you share a more detailed reading of your pathology report? There should be staging and information about how agressive the tumor is in the pathology report. It would read something like T1NX MX Grade 2.

    Usually a tumor as small as yours (2 cm is pretty small), is Stage 1. The cure rate for nephrectomy for most Stage 1 tumors is over 90%, but you need to also look at your tumor grade and other information on your pathology report. The tumor grade has been shown to be an independent indicator of prognosis (somebody, if I'm wrong, please speak up).

    Did the doctor give you a prognosis?

    If it were me, and even with a small tumor like this, I'd find a good medical oncologist for a follow up. Ideally they'd have some RCC experience or if someone that knows a lot about RCC is nearby, I'd choose them and get a followup appointment. Definitely still do your follow ups even if you're given a great prognosis.

    Urologic oncologists are NOT medical oncologists. It took me awhile to get that. Urologic oncologists are urologists that are surgeons who specialize in removing (surgically) genitourinary tumors. Medical oncologists are specialists that normally have studied internal medicine or hematology and then have gone on to study and treat systemic cancer. Your urologist will probably want to follow you. However, I wouldn't do that unless I was low risk and there was nobody else better qualified to do it.

    You're most likely in one of the better categories for having what we have. So welcome to the club. Sorry you had to go through this.

    Wishing you the best,

    Todd

    Urologist vs Oncologist

    Regarding....."Urologic oncologists are NOT medical oncologists. It took me awhile to get that. Urologic oncologists are urologists that are surgeons who specialize in removing (surgically) genitourinary tumors. Medical oncologists are specialists that normally have studied internal medicine or hematology and then have gone on to study and treat systemic cancer. Your urologist will probably want to follow you. However, I wouldn't do that unless I was low risk and there was nobody else better qualified to do it."

    Having just gotten through what is happening to this new T1a stage 1, I'm still perplexed by the above statement. It still knocks me back into a corner. Went and told my family Doc to get me an Oncologist who deals with RCC. Went to see one....guy said "sorry we can't do anything for you the urologist can't do as you don't have the cancer anymore, it was cut out, the 6 month follow ups are all you do now. So your Urologist is just fine for your case"

    Am I missing something here. What do I need an Oncologist for when scans are the only thing on the agenda (hopefully). I can see the need if something shows up but until then ? I'm still trying to get this.

  • GSRon
    GSRon Member Posts: 1,303
    jknorth said:

    Urologist vs Oncologist

    Regarding....."Urologic oncologists are NOT medical oncologists. It took me awhile to get that. Urologic oncologists are urologists that are surgeons who specialize in removing (surgically) genitourinary tumors. Medical oncologists are specialists that normally have studied internal medicine or hematology and then have gone on to study and treat systemic cancer. Your urologist will probably want to follow you. However, I wouldn't do that unless I was low risk and there was nobody else better qualified to do it."

    Having just gotten through what is happening to this new T1a stage 1, I'm still perplexed by the above statement. It still knocks me back into a corner. Went and told my family Doc to get me an Oncologist who deals with RCC. Went to see one....guy said "sorry we can't do anything for you the urologist can't do as you don't have the cancer anymore, it was cut out, the 6 month follow ups are all you do now. So your Urologist is just fine for your case"

    Am I missing something here. What do I need an Oncologist for when scans are the only thing on the agenda (hopefully). I can see the need if something shows up but until then ? I'm still trying to get this.

    JK, maybe I can help clarify

    JK, maybe I can help clarify it a bit..  I am assuming you have Clear Cell RCC.  Clear Cell, is named that for a reason.  If you had Mets show up, someone not familiar with ccRCC could easliy miss them, depending on a few things, most important is the type of scans..!  We have had people come here and their unknowing general Oncologist or Urologist did not order up the corect scan.. and bingo..!  The poor person goes on their happy way until they get a more serious issue.  I am not trying to scare you, but the term "scan" is sort of generic.  So, getting the correct scans is very important.  Then there is the skill of the person reading the scan.  If that person is not familiar with ccRCC the same thing can and has happened, Mets get missed.   Getting the proper expertise gives you the best chances, should there be any Mets.   Maybe someone else can state it better than I...  

    All that said, looks like your Pathology is darn good.. and most likely you will be Cancer free forever.  BUT, RCC is a sneaky Cancer.. and it can show up many years down the road.  This is why the follow ups are so important.  Perhaps due to your great Pathology report, some Oncologists do not want (or need) another patient right now.. but you may decide to try again.. your call...

    Good Luck..

    Ron

  • Darron
    Darron Member Posts: 310
    jknorth said:

    Urologist vs Oncologist

    Regarding....."Urologic oncologists are NOT medical oncologists. It took me awhile to get that. Urologic oncologists are urologists that are surgeons who specialize in removing (surgically) genitourinary tumors. Medical oncologists are specialists that normally have studied internal medicine or hematology and then have gone on to study and treat systemic cancer. Your urologist will probably want to follow you. However, I wouldn't do that unless I was low risk and there was nobody else better qualified to do it."

    Having just gotten through what is happening to this new T1a stage 1, I'm still perplexed by the above statement. It still knocks me back into a corner. Went and told my family Doc to get me an Oncologist who deals with RCC. Went to see one....guy said "sorry we can't do anything for you the urologist can't do as you don't have the cancer anymore, it was cut out, the 6 month follow ups are all you do now. So your Urologist is just fine for your case"

    Am I missing something here. What do I need an Oncologist for when scans are the only thing on the agenda (hopefully). I can see the need if something shows up but until then ? I'm still trying to get this.

    Case and point

    I am one of those people who had their urologist say "he got it all". I was not stage 1 grade , I was stage 3 (according to him).

    At the urging of a friend, I went to an RCC oncology specialist. He immediately ordered a chest and abdominal CT. My urologist had relied on a chest x-Ray. Not only did he see mets to my lungs, he found a tumor in my remaining adrenal gland that the urologist never saw. I was immediately stage 4

    I think being stage 1, the odds of something like that for you are extremely small, but having the CT scans (get scans) reviewed by someone who knows more what to look for is the goal.

    if you ever do have a recurrence, the urologist will refer you to an oncologist for treatment. To me it makes sense to get Comfortable with that doctor just in case there is a recurrence. they are just more specifically trained on what to look for In your body. Do make sure that they are a RCC specialist, not just a general oncology doctor. We are very special in our disease.

    you will be fine, be at peace, but do not let your guard down.

     

  • dhs1963
    dhs1963 Member Posts: 513
    Darron said:

    Case and point

    I am one of those people who had their urologist say "he got it all". I was not stage 1 grade , I was stage 3 (according to him).

    At the urging of a friend, I went to an RCC oncology specialist. He immediately ordered a chest and abdominal CT. My urologist had relied on a chest x-Ray. Not only did he see mets to my lungs, he found a tumor in my remaining adrenal gland that the urologist never saw. I was immediately stage 4

    I think being stage 1, the odds of something like that for you are extremely small, but having the CT scans (get scans) reviewed by someone who knows more what to look for is the goal.

    if you ever do have a recurrence, the urologist will refer you to an oncologist for treatment. To me it makes sense to get Comfortable with that doctor just in case there is a recurrence. they are just more specifically trained on what to look for In your body. Do make sure that they are a RCC specialist, not just a general oncology doctor. We are very special in our disease.

    you will be fine, be at peace, but do not let your guard down.

     

    Mets and stage 1....

    I was initially diagnosed T1b Stage 1, grade 4 with sacomitoid differentiation.  Once they saw the latter, a RCC specialist would have ordered a chest CT (if it had not been done), and gone on a 3 month protocol.  instead, my urologist (not even urologic oncologist) left it at the chest x-ray...with followup in six months.  My six month review was at another facility (NIH), where they did CT...and found a 1.5 cm mass in my lung, with was a (thankfully) solitary met.   We do not know if the tumor was present at diagnosis, because a chest xray is not as good as a ct scan.  It is that simple.  I may have had metastaic disease, or the met may have showed up later. 

    With that said, at NIH, I have been told the reason why it goes from T1a to T1b at 4 cm is that small tumors rairly if ever metastisize.  In the familial study at NIH (which I was part of), they will not operate on a tumor less than 3 cm....non-familial is different.  (In familial, you can expect more tumors in the kidney, and you want to keep as much nephretic tissue as possible). 

    With all of this scary writing, you have a small, non-agressive tumor.  The only followup should be scans, at 3-6 months.  I would insist on a chest CT, though, rather than an xray.

     

  • foxhd
    foxhd Member Posts: 3,181
    dhs1963 said:

    Mets and stage 1....

    I was initially diagnosed T1b Stage 1, grade 4 with sacomitoid differentiation.  Once they saw the latter, a RCC specialist would have ordered a chest CT (if it had not been done), and gone on a 3 month protocol.  instead, my urologist (not even urologic oncologist) left it at the chest x-ray...with followup in six months.  My six month review was at another facility (NIH), where they did CT...and found a 1.5 cm mass in my lung, with was a (thankfully) solitary met.   We do not know if the tumor was present at diagnosis, because a chest xray is not as good as a ct scan.  It is that simple.  I may have had metastaic disease, or the met may have showed up later. 

    With that said, at NIH, I have been told the reason why it goes from T1a to T1b at 4 cm is that small tumors rairly if ever metastisize.  In the familial study at NIH (which I was part of), they will not operate on a tumor less than 3 cm....non-familial is different.  (In familial, you can expect more tumors in the kidney, and you want to keep as much nephretic tissue as possible). 

    With all of this scary writing, you have a small, non-agressive tumor.  The only followup should be scans, at 3-6 months.  I would insist on a chest CT, though, rather than an xray.

     

    What for?

    This is exactly what this forum is for. Clarification of supposedly "minor" issues. I wish I had been here when first diagnosed. Urologist who removed my tumor said Stage 3 and he got it all. He did refer me to a local oncologist. But in 6 months I was advanced stage 4 with poor prognosis. How did this happen? Easy answer. They were not qualified to follow my case. It almost cost me my life. Still may, but my outlook is now very good. I'm fortunate that it wasn't too late. I am here because I am a patient of someone who knows what is going on.

    Look at it from this angle. 1. diagnosed with kidney cancer. 2. nephrectomy. 3. ALL internet information said poor survival. 4. told there was NOTHING they could do. 5.Confirmed by other oncologists from 3 other facilities. 6 months to live.....boy did that suck.

     I gave it another shot. I found an immunologist oncologist specializing in melanoma and kidney cancer. And here I am. 2 years beyond my expected  expiration date. I am fit. I am strong.  I did my weight training this morning followed by a 2 mile jog. I have limited evidence of disease and it is stable. All because I got lucky and found someone much more qualified and knowledgable. None of my previous doctors were stupid. I doubt all their patients die. They just cannot know everything. Kidney cancer is not their daily job. That is why there are specialists. When I think of it, I realize that if any of my previous doctors had my cancer, I would bet the farm that they would find a specialist for themselves. And not one of them would feel they are betraying their office partners.

    Every day I see commercials promoting the cancer centers of several hospitals. I get shivers thinking people get their care there. One size does not fit all. As health care consumers, we need to learn how to shop around. For those who join this site early in their battle, their odds improve rapidly. Knowledge is power. Listen to the voices of experience. I think most of us now see different oncologists than the one we started out with.

  • DSFrey
    DSFrey Member Posts: 69
    dhs1963 said:

    Mets and stage 1....

    I was initially diagnosed T1b Stage 1, grade 4 with sacomitoid differentiation.  Once they saw the latter, a RCC specialist would have ordered a chest CT (if it had not been done), and gone on a 3 month protocol.  instead, my urologist (not even urologic oncologist) left it at the chest x-ray...with followup in six months.  My six month review was at another facility (NIH), where they did CT...and found a 1.5 cm mass in my lung, with was a (thankfully) solitary met.   We do not know if the tumor was present at diagnosis, because a chest xray is not as good as a ct scan.  It is that simple.  I may have had metastaic disease, or the met may have showed up later. 

    With that said, at NIH, I have been told the reason why it goes from T1a to T1b at 4 cm is that small tumors rairly if ever metastisize.  In the familial study at NIH (which I was part of), they will not operate on a tumor less than 3 cm....non-familial is different.  (In familial, you can expect more tumors in the kidney, and you want to keep as much nephretic tissue as possible). 

    With all of this scary writing, you have a small, non-agressive tumor.  The only followup should be scans, at 3-6 months.  I would insist on a chest CT, though, rather than an xray.

     

    This has me thinking...

    My tumor was pT1a grade 2, and my urologist just has me scheduled for an abdominal CT in a few months for a baseline scan. He made no mention of chest CT or x-ray. Then again he did get a chest CT at the time the tumor was found. So maybe I don't need a chest scan yet?

  • RandaLeigh
    RandaLeigh Member Posts: 15
    Question

    Should I be followed by an oncologist since my mass  was a grade 1? I see my urologist on Friday and I want to be as educated as I can be. Does renal cancer ever reoccur after partial  nephrectomy for grade 1 RCC? Any questions I should ask my urologist specifically? 

  • jknorth
    jknorth Member Posts: 44
    GSRon said:

    JK, maybe I can help clarify

    JK, maybe I can help clarify it a bit..  I am assuming you have Clear Cell RCC.  Clear Cell, is named that for a reason.  If you had Mets show up, someone not familiar with ccRCC could easliy miss them, depending on a few things, most important is the type of scans..!  We have had people come here and their unknowing general Oncologist or Urologist did not order up the corect scan.. and bingo..!  The poor person goes on their happy way until they get a more serious issue.  I am not trying to scare you, but the term "scan" is sort of generic.  So, getting the correct scans is very important.  Then there is the skill of the person reading the scan.  If that person is not familiar with ccRCC the same thing can and has happened, Mets get missed.   Getting the proper expertise gives you the best chances, should there be any Mets.   Maybe someone else can state it better than I...  

    All that said, looks like your Pathology is darn good.. and most likely you will be Cancer free forever.  BUT, RCC is a sneaky Cancer.. and it can show up many years down the road.  This is why the follow ups are so important.  Perhaps due to your great Pathology report, some Oncologists do not want (or need) another patient right now.. but you may decide to try again.. your call...

    Good Luck..

    Ron

    Ok, Im going to try again

    Next Doc visit will attempt to ask him to refer me to my list of Oncologists that I will research....Last thing I want is some apprentice scan analyst looking at my image and missing something, and 1 year later get a different story. Not to mention the Urologist maybe going on his 5 year old manual on how to treat RCC followups with a yearly XRay to the chest. Its hard guessing who's good who's not and dumping the surgeon who just worked on you.

  • icemantoo
    icemantoo Member Posts: 3,359 Member
    Oncologist follow uo

    Randa,

     

    The consensous on this board is that you have a follow up consultation with an Oncologist . While that may not be my opinion you have an additional layer of concern being that you got RCC way younger than usual for getting RCC. Rccc is a rare Cancer only being about 3 % of all cancers (with a good sprinkling of those 3% on this board). I suspect at 31 years old you are in the youngest 3% of  rcc club members.

    When all is said and done see about the availability of getting a referral to an Oncologist although I suspect you will do just as well either way.

     

    Icemantoo

  • DSFrey
    DSFrey Member Posts: 69

    Question

    Should I be followed by an oncologist since my mass  was a grade 1? I see my urologist on Friday and I want to be as educated as I can be. Does renal cancer ever reoccur after partial  nephrectomy for grade 1 RCC? Any questions I should ask my urologist specifically? 

    Concerning recurrence

    Yes it does but very rarely for cases like ours when the tumor was pT1a. I've seen various articles on the internet that contradict one another as to if the grade influenced the possibility of recurrence, but even if it does still its not typically going to change the likelyhood significantly.

  • GSRon
    GSRon Member Posts: 1,303
    icemantoo said:

    Oncologist follow uo

    Randa,

     

    The consensous on this board is that you have a follow up consultation with an Oncologist . While that may not be my opinion you have an additional layer of concern being that you got RCC way younger than usual for getting RCC. Rccc is a rare Cancer only being about 3 % of all cancers (with a good sprinkling of those 3% on this board). I suspect at 31 years old you are in the youngest 3% of  rcc club members.

    When all is said and done see about the availability of getting a referral to an Oncologist although I suspect you will do just as well either way.

     

    Icemantoo

    Keep in mind NO ONE is 100%

    Keep in mind NO ONE is 100% Cancer free...  Many are in an NED or NEVD status.. (No Evidence of Disease or No Visible Evidence of Disease).  In your case I suspect most experts (not me) would say you are like 95 to 98% in the clear forever.  It is that last few percentage points that is the issue.  Kidney Cancer is sneaky... yes you most likely are in the clear.. the odds are in your favor... but still not 100%.  So in the end it is your decision...  At least make an informed decision based on as much fact as you can gather... try not to act on emotion.. easy to say, hard to do...

    Good Luck..

    Ron

  • Srashedb
    Srashedb Member Posts: 482
    GSRon said:

    JK, maybe I can help clarify

    JK, maybe I can help clarify it a bit..  I am assuming you have Clear Cell RCC.  Clear Cell, is named that for a reason.  If you had Mets show up, someone not familiar with ccRCC could easliy miss them, depending on a few things, most important is the type of scans..!  We have had people come here and their unknowing general Oncologist or Urologist did not order up the corect scan.. and bingo..!  The poor person goes on their happy way until they get a more serious issue.  I am not trying to scare you, but the term "scan" is sort of generic.  So, getting the correct scans is very important.  Then there is the skill of the person reading the scan.  If that person is not familiar with ccRCC the same thing can and has happened, Mets get missed.   Getting the proper expertise gives you the best chances, should there be any Mets.   Maybe someone else can state it better than I...  

    All that said, looks like your Pathology is darn good.. and most likely you will be Cancer free forever.  BUT, RCC is a sneaky Cancer.. and it can show up many years down the road.  This is why the follow ups are so important.  Perhaps due to your great Pathology report, some Oncologists do not want (or need) another patient right now.. but you may decide to try again.. your call...

    Good Luck..

    Ron

    Questions

    my husband had a urologist/surgeon and now sees a urologist/oncologist; the latter does not do surgeries, only deals with urologic cancers.

    we were told that renal oncologists would be a very small medical practice. 

    Am I missing something?

    Sarah

  • GSRon
    GSRon Member Posts: 1,303
    foxhd said:

    What for?

    This is exactly what this forum is for. Clarification of supposedly "minor" issues. I wish I had been here when first diagnosed. Urologist who removed my tumor said Stage 3 and he got it all. He did refer me to a local oncologist. But in 6 months I was advanced stage 4 with poor prognosis. How did this happen? Easy answer. They were not qualified to follow my case. It almost cost me my life. Still may, but my outlook is now very good. I'm fortunate that it wasn't too late. I am here because I am a patient of someone who knows what is going on.

    Look at it from this angle. 1. diagnosed with kidney cancer. 2. nephrectomy. 3. ALL internet information said poor survival. 4. told there was NOTHING they could do. 5.Confirmed by other oncologists from 3 other facilities. 6 months to live.....boy did that suck.

     I gave it another shot. I found an immunologist oncologist specializing in melanoma and kidney cancer. And here I am. 2 years beyond my expected  expiration date. I am fit. I am strong.  I did my weight training this morning followed by a 2 mile jog. I have limited evidence of disease and it is stable. All because I got lucky and found someone much more qualified and knowledgable. None of my previous doctors were stupid. I doubt all their patients die. They just cannot know everything. Kidney cancer is not their daily job. That is why there are specialists. When I think of it, I realize that if any of my previous doctors had my cancer, I would bet the farm that they would find a specialist for themselves. And not one of them would feel they are betraying their office partners.

    Every day I see commercials promoting the cancer centers of several hospitals. I get shivers thinking people get their care there. One size does not fit all. As health care consumers, we need to learn how to shop around. For those who join this site early in their battle, their odds improve rapidly. Knowledge is power. Listen to the voices of experience. I think most of us now see different oncologists than the one we started out with.

    I just read an article that

    I just read an article that clearly stated that (Ovarian) Cancer patients that go to a "better" doctor/hospital live an average of 1 year longer.  Now this was for Ovarian Cancer, but I would bet this applies to RCC as well, just the time period may be longer.? (wishful thinking..?).   I am amazed at the blase' attitude we see in some of the patients at times.  This IS a life or death matter... ouch, hate to put it in that context.. but...

    Ron 

  • dhs1963
    dhs1963 Member Posts: 513
    DSFrey said:

    Concerning recurrence

    Yes it does but very rarely for cases like ours when the tumor was pT1a. I've seen various articles on the internet that contradict one another as to if the grade influenced the possibility of recurrence, but even if it does still its not typically going to change the likelyhood significantly.

    Agressiveness and grade

    The difference between grade 1, 2, and 3 is not much in agressiveniss on a small tumor.  Recurance varies from 2-4%.  Go to grade 4, or with sarcomitoid differentiation, and you may bounce to well over 10%.

     

    It matters in determining a lot of things.

     

  • RandaLeigh
    RandaLeigh Member Posts: 15
    Thanks!

    Thanks everyone for all the replies. I truly appreciate it. As I've said I see my urologist tomorrow morning to get my full path report. I will post the full results when I get them. I have been overwhelmed with so much negativity about this disease on the Internet. So glad I found this site with all you folks And so much positivity! Hugs and prayers to each one of you as we all fight this battle. :)