Need to see an oncologist?

Minnesota Girl
Minnesota Girl Member Posts: 119
in Kidney Cancer #1
I am 43 and my cancer was found 'accidentally' on a CT for diverticulitis. Fortunately, the tumor was less than 3 cm. Because of its placement, I had to have a radical nephrectomy. My surgery was July 6 and I'm on the road to recovery.

We will see my urologist in one week and get the full pathology report. Initially, he suggested the surgery would be my cure and I'd 'never need to see an oncologist.' However, the more my husband and I read and talk, we really feel like we should consult an oncologist.

What has your experience been? Will the urologist recommend someone, or should we go on our own? A kidney cancer specialist would be important, right? How do we find a good one? We have great doctors in our area, but no friends with kidney cancer experience that we could ask for a recommendation.

Also, I have a lot of questions about taking good care of the one kidney I do have - should I have a nephrologist?

Thanks for any help you can offer. This is my first day and the boards and I've already found so much great information!
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Comments

  • rae_rae
    rae_rae Member Posts: 300 Member
    #2
    Welcome
    Hi Minnesota Girl,

    I would definitely see an oncologist. If you are in Minnesota, is Mayo a possibility? At least talk to an oncologist that could possibly refer you to someone that specializes in RCC.

    Though my tumor was larger than yours, my urologist told me it wasn't necessary to see an oncologist and in fact told me chest xrays and labs every three months for the first year was pretty much it, which was a bit lacking in follow up care. I wish I would have followed up with an oncologist last year.

    A nephrologist is not a bad idea either as there are certain things you should do to take care of you kidney.

    Someone passed this link to me. I found it useful but remember it is only a guideline and you should do what you feel is best for you and your health.

    Rae
  • icemantoo
    icemantoo Member Posts: 3,361 Member
    #3
    First ask the Urologist
    Dear Minnesota girl,

    I am 9 years post surgery and here is my perspective. My tumor was 2.7 cm before surgery and I recently found out that it was 4.2cm when they got the rascal out. My Urologist is also a board certified Oncologist so your first question was never asked. What I have ascertained though is that the Urologists who do this surgery (only 5 or 10 %) are specialists in Kidney Cancer. So if the Urologist you see is the one that did the surgery give some weight to his (there are very, very few women Urologists) opinion as well as the pathology report.

    On the question of seeing a Nephrologist both my Urologist and GP said this was not necessary and would not recommend one. I scheduled a Nephrologist on my own and he is addressing kidney function issues that have gotten worse over the years.

    As a result of only having 1 Kidney your creatine and GFR blood numbers are by definition abnormal. My suggestion is that you see a Nephrologist in any event with these two blood results in hand. Initially the treatment is not very painful. He has my blood pressure down by medication, much lower than my GP was satisfied with. We are also addressing diet questions.

    Keep up the good smile so that you can help me welcome the newcomers dowm the road. I will be 68 this week so you have at least 25 more years than me to follow in my place.

    At 3cm the odds are in your favor for a full and complete recovery so try not to worry until there is something further to worry about.

    Being diagnosed with Kidney Cancer and than having surgery right out of the gate does cause worry, but things do get better every day.

    Remember there are a lot of different opinions on this board so look at all of them especially those close to your diagnosis.

    Best wishes,

    Icemantoo
  • datwood
    datwood Member Posts: 3
    #4
    icemantoo said:

    First ask the Urologist
    Dear Minnesota girl,

    I am 9 years post surgery and here is my perspective. My tumor was 2.7 cm before surgery and I recently found out that it was 4.2cm when they got the rascal out. My Urologist is also a board certified Oncologist so your first question was never asked. What I have ascertained though is that the Urologists who do this surgery (only 5 or 10 %) are specialists in Kidney Cancer. So if the Urologist you see is the one that did the surgery give some weight to his (there are very, very few women Urologists) opinion as well as the pathology report.

    On the question of seeing a Nephrologist both my Urologist and GP said this was not necessary and would not recommend one. I scheduled a Nephrologist on my own and he is addressing kidney function issues that have gotten worse over the years.

    As a result of only having 1 Kidney your creatine and GFR blood numbers are by definition abnormal. My suggestion is that you see a Nephrologist in any event with these two blood results in hand. Initially the treatment is not very painful. He has my blood pressure down by medication, much lower than my GP was satisfied with. We are also addressing diet questions.

    Keep up the good smile so that you can help me welcome the newcomers dowm the road. I will be 68 this week so you have at least 25 more years than me to follow in my place.

    At 3cm the odds are in your favor for a full and complete recovery so try not to worry until there is something further to worry about.

    Being diagnosed with Kidney Cancer and than having surgery right out of the gate does cause worry, but things do get better every day.

    Remember there are a lot of different opinions on this board so look at all of them especially those close to your diagnosis.

    Best wishes,

    Icemantoo

    Do I need an oncologist?
    From one Minnesota Girl to another....my 53 year old husband was found to have a 17.5 cm tumor on his kidney in 6/10. He had surgery at Mayo in Rochester. Going back for the 3 month follow up CT scan, it was found to have metastsized to his lungs (Stage IV, incurable). The Mayo oncologist wanted him to wait and see how fast they grow, etc. There is an email site with people and caregivers all over the world that have Kidney Cancer. It is ACOR.org. Go to it, click in under the kidney cancer and sign in. You will receive emails daily from the discussion on it. It is priceless. We didn't know what to do when we were first made aware of the RCC. The people on that site encouraged me to be an advocate for my husband and to ALWAYS get a 2nd opinion....and, MOST IMPORTANTLY....HAVE AN ONCOLOGIST THAT SPECIALIZES IN RCC work with you. RCC is not a cancer that every oncologist is well-learned in. There are so many updates on this and new treatments. If an oncologist isn't specialized in this, you could miss so many things. We ended up at the University of Minnesota Masonic Cancer Center with Dr. Dudek. He is amazing and works so closely with us in getting the best treatments for my husband. Please, please follow up with an RCC specialist and get onto the ACOR.org email list....it is such a blessing! I have learned more from that than anywhere. Best of luck to you!!
  • Jamie1.3cm
    Jamie1.3cm Member Posts: 188
    #5
    datwood said:

    Do I need an oncologist?
    From one Minnesota Girl to another....my 53 year old husband was found to have a 17.5 cm tumor on his kidney in 6/10. He had surgery at Mayo in Rochester. Going back for the 3 month follow up CT scan, it was found to have metastsized to his lungs (Stage IV, incurable). The Mayo oncologist wanted him to wait and see how fast they grow, etc. There is an email site with people and caregivers all over the world that have Kidney Cancer. It is ACOR.org. Go to it, click in under the kidney cancer and sign in. You will receive emails daily from the discussion on it. It is priceless. We didn't know what to do when we were first made aware of the RCC. The people on that site encouraged me to be an advocate for my husband and to ALWAYS get a 2nd opinion....and, MOST IMPORTANTLY....HAVE AN ONCOLOGIST THAT SPECIALIZES IN RCC work with you. RCC is not a cancer that every oncologist is well-learned in. There are so many updates on this and new treatments. If an oncologist isn't specialized in this, you could miss so many things. We ended up at the University of Minnesota Masonic Cancer Center with Dr. Dudek. He is amazing and works so closely with us in getting the best treatments for my husband. Please, please follow up with an RCC specialist and get onto the ACOR.org email list....it is such a blessing! I have learned more from that than anywhere. Best of luck to you!!

    My .2 cents
    For those of us with tumors <3 cm, surgery is usually the cure. But you must be vigilant about follow up ct scans, just in case.

    And I do think your urologist can answer your very good questions and refer you to an oncologist that specializes in kidney cancer. You might want to do this just for peace of mind.

    However, keep in mind that since the tumor was caught so small, your prognosis is very, very good. It's the large tumors that bring on the scary stories.
  • Minnesota Girl
    Minnesota Girl Member Posts: 119
    #6
    Jamie1.3cm said:

    My .2 cents
    For those of us with tumors <3 cm, surgery is usually the cure. But you must be vigilant about follow up ct scans, just in case.

    And I do think your urologist can answer your very good questions and refer you to an oncologist that specializes in kidney cancer. You might want to do this just for peace of mind.

    However, keep in mind that since the tumor was caught so small, your prognosis is very, very good. It's the large tumors that bring on the scary stories.</p>

    Thank you
    Thank you all for your great feedback and comments. I've looked at some of the resources you suggested and am ready to be me own best advocate. Thanks so much!
  • Minnesota Girl
    Minnesota Girl Member Posts: 119
    #7
    Jamie1.3cm said:

    My .2 cents
    For those of us with tumors <3 cm, surgery is usually the cure. But you must be vigilant about follow up ct scans, just in case.

    And I do think your urologist can answer your very good questions and refer you to an oncologist that specializes in kidney cancer. You might want to do this just for peace of mind.

    However, keep in mind that since the tumor was caught so small, your prognosis is very, very good. It's the large tumors that bring on the scary stories.</p>

    Thank you
    Thank you all for your great feedback and comments. I've looked at some of the resources you suggested and am ready to be me own best advocate. Thanks so much!
  • piercedmumma
    piercedmumma Member Posts: 7
    #8
    Minnesota Girl said:

    Thank you
    Thank you all for your great feedback and comments. I've looked at some of the resources you suggested and am ready to be me own best advocate. Thanks so much!

    Do I need to too?
    Hi guys

    I had a 5cm tumor removed on June 20, 2011. I have been only to my urologist, but everything was contained within the kidney.

    Nothing was mentioned about an oncologist, but I will have follow up CT's etc.

    So do I need to see an oncologist?

    I do not need to have chemo or anything.
  • Minnesota Girl
    Minnesota Girl Member Posts: 119
    #9
    The rest of the story
    I am very happy to report I have an appointment with an oncologist who specializes in RCC. My urologist was in total agreement - he brought it up before I did. Since I am so young, he wants the oncologist to take the lead for my follow-up care. In his words "I'm a plumber, you need an electrician" :)

    Pathology on the tumor: 2.5 cm, limited to the kidney, all margins free of cancer, Fuhrman Grade 3. That Grade 3 is the only part scaring me.
  • icemantoo
    icemantoo Member Posts: 3,361 Member
    #10
    Minnesota Girl said:

    The rest of the story
    I am very happy to report I have an appointment with an oncologist who specializes in RCC. My urologist was in total agreement - he brought it up before I did. Since I am so young, he wants the oncologist to take the lead for my follow-up care. In his words "I'm a plumber, you need an electrician" :)

    Pathology on the tumor: 2.5 cm, limited to the kidney, all margins free of cancer, Fuhrman Grade 3. That Grade 3 is the only part scaring me.

    My replacement
    Minnesota Girl,

    Sounds good. You should be able to replace me down the road. I am 68 now. A 9 year survivor amd may not be around 25 years from now when you reach 68.

    Best wishes,

    Icemantoo
  • Vagusto
    Vagusto Member Posts: 86
    #11
    Minnesota girl too!
    I had a radical nephrectomy Oct 2009 at age 46. Went in for u/s to confirm gallstones. Tumor was able the size of my fist. Didn't require any treatment as it was confined, and doc was able to get clean margins. I've been following up every three months rotating CT Scans, labs/blood work, and MRI. CT Scan last week showed a small lesion (size of a small pea) on my remaining kidney. Needless to say, I'm worried sick!!!! Doc wants to follow up in Nov with an ultrasound. I didn't question him about why wait as I was in shock. Started thinking maybe I should see an Oncologist too.
    He's on vacation for two weeks, I will be calling him when he's back in the office. Have you had any experience with the U of M , or Mayo?

    I hope your recovery is going well!
    Take Care
    Valerie
  • icemantoo
    icemantoo Member Posts: 3,361 Member
    #12
    Vagusto said:

    Minnesota girl too!
    I had a radical nephrectomy Oct 2009 at age 46. Went in for u/s to confirm gallstones. Tumor was able the size of my fist. Didn't require any treatment as it was confined, and doc was able to get clean margins. I've been following up every three months rotating CT Scans, labs/blood work, and MRI. CT Scan last week showed a small lesion (size of a small pea) on my remaining kidney. Needless to say, I'm worried sick!!!! Doc wants to follow up in Nov with an ultrasound. I didn't question him about why wait as I was in shock. Started thinking maybe I should see an Oncologist too.
    He's on vacation for two weeks, I will be calling him when he's back in the office. Have you had any experience with the U of M , or Mayo?

    I hope your recovery is going well!
    Take Care
    Valerie

    Hang in there
    Valarie,

    Small cysts and lesions on the Kidney are not that uncommon. Typically the doctors watch them over a period of time to make sure that nothing develops. I have those little buggars on my remaining kidney from time to time. It has been over 9 years and I have no intention of worrying about this until my doctor (a urological oncologist) shows some concern.

    Best Wishes,

    Icemantoo
  • Vagusto
    Vagusto Member Posts: 86
    #13
    icemantoo said:

    Hang in there
    Valarie,

    Small cysts and lesions on the Kidney are not that uncommon. Typically the doctors watch them over a period of time to make sure that nothing develops. I have those little buggars on my remaining kidney from time to time. It has been over 9 years and I have no intention of worrying about this until my doctor (a urological oncologist) shows some concern.

    Best Wishes,

    Icemantoo

    Icemantoo
    Thanks for the
    Icemantoo

    Thanks for the reply. I need to find a way to not worry so much, I'm going
    to get an ulcer! Glad to hear that you're doing well.
    Valerie
  • Kwilliams630
    Kwilliams630 Member Posts: 10
    #14
    Vagusto said:

    Icemantoo
    Thanks for the
    Icemantoo

    Thanks for the reply. I need to find a way to not worry so much, I'm going
    to get an ulcer! Glad to hear that you're doing well.
    Valerie

    Hi everyone. This is my
    Hi everyone. This is my first day on the network and already I'm so glad I found this! I had an open partial not even 2 weeks ago and was wondering myself about seeing an oncologist. I want my follow up to be thorough as everyone does. Just scared a little about recurrence even though I know chances are slim because my tumor was only 2.5 cm. But I'm only 29 and just want to make the right steps for follow up! So do some of you see your urologist and an oncologist now or just one? Like I said I'm new here and hope I'm even posting right! LOL

    Thanks!!
  • BG
    BG Member Posts: 85 Member
    #15
    Kwilliams630 said:

    Hi everyone. This is my
    Hi everyone. This is my first day on the network and already I'm so glad I found this! I had an open partial not even 2 weeks ago and was wondering myself about seeing an oncologist. I want my follow up to be thorough as everyone does. Just scared a little about recurrence even though I know chances are slim because my tumor was only 2.5 cm. But I'm only 29 and just want to make the right steps for follow up! So do some of you see your urologist and an oncologist now or just one? Like I said I'm new here and hope I'm even posting right! LOL

    Thanks!!

    Urologist and Oncologist for me
    Hi K, I am with you. My partial was 4 weeks ago, and next Monday I have an appointment with an Oncologist who specializes in RCC. My tumor was 3.9 cm, and confined to the kidney but I still feel for me that it is important to add an Oncologist to the team.

    There are a lot of wonderfull individuals on this site, who provide guidance, support, and much more. We are lucky to have run across this network!

    I wish you the very best, and know with each day you will get better.

    Brent
  • Kwilliams630
    Kwilliams630 Member Posts: 10
    #16
    BG said:

    Urologist and Oncologist for me
    Hi K, I am with you. My partial was 4 weeks ago, and next Monday I have an appointment with an Oncologist who specializes in RCC. My tumor was 3.9 cm, and confined to the kidney but I still feel for me that it is important to add an Oncologist to the team.

    There are a lot of wonderfull individuals on this site, who provide guidance, support, and much more. We are lucky to have run across this network!

    I wish you the very best, and know with each day you will get better.

    Brent

    Thanks for the comment BG!
    Thanks for the comment BG! After coming across this network today i feel almost giddy, like its Christmas or something! HAHA! This particular discussion has been most helpful as the question of an oncologist has been one of my main concerns. I guess what it comes down to is that we all need to be in control of our own health. Had i not pushed for a biopsy we would have just been watching the mass on my kidney. My urologist was "very confident" that it was benign considering i am only 29 and suggested just watching it. But i wasn't comfortable with just watching it. I guess adding an oncologist is like another security blanket for me, LOL. I have 2 small kids and i want to know i'm covering all by bases, just like every one else. I will be discussing adding an oncologist to my "team" at my follow-up appointment.

    Thanks again for the reply. As you know every response and kind word helps in so many ways!! Lucky to be here :)
  • BG
    BG Member Posts: 85 Member
    #17
    Kwilliams630 said:

    Thanks for the comment BG!
    Thanks for the comment BG! After coming across this network today i feel almost giddy, like its Christmas or something! HAHA! This particular discussion has been most helpful as the question of an oncologist has been one of my main concerns. I guess what it comes down to is that we all need to be in control of our own health. Had i not pushed for a biopsy we would have just been watching the mass on my kidney. My urologist was "very confident" that it was benign considering i am only 29 and suggested just watching it. But i wasn't comfortable with just watching it. I guess adding an oncologist is like another security blanket for me, LOL. I have 2 small kids and i want to know i'm covering all by bases, just like every one else. I will be discussing adding an oncologist to my "team" at my follow-up appointment.

    Thanks again for the reply. As you know every response and kind word helps in so many ways!! Lucky to be here :)

    Hi K,
    My doctor said I had
    Hi K,

    My doctor said I had high liver enzymes, and said we can wait 3 months and recheck, or you can get an ultrasound. I opted to get the ultrasound, and thats when they found the tumor, so I know what you mean when you say we need to be in cotrol of our own health.

    Even though I know for stage 1 the prognosis is good, I need that reassurnce and feel an oncologist can answer some questions that urologist can't.

    As several individuals have said on this board, be sure to get a RCC specialist rather than a general oncologist. If you post the city or area you live in, others may be able to direct you to a specialist near you.

    I too have 2 small children (ages 3 and 6), I started late being 48 now, but I am thankful for finding this early. My prayers are with you!

    BG
  • Kwilliams630
    Kwilliams630 Member Posts: 10
    #18
    BG said:

    Hi K,
    My doctor said I had
    Hi K,

    My doctor said I had high liver enzymes, and said we can wait 3 months and recheck, or you can get an ultrasound. I opted to get the ultrasound, and thats when they found the tumor, so I know what you mean when you say we need to be in cotrol of our own health.

    Even though I know for stage 1 the prognosis is good, I need that reassurnce and feel an oncologist can answer some questions that urologist can't.

    As several individuals have said on this board, be sure to get a RCC specialist rather than a general oncologist. If you post the city or area you live in, others may be able to direct you to a specialist near you.

    I too have 2 small children (ages 3 and 6), I started late being 48 now, but I am thankful for finding this early. My prayers are with you!

    BG

    Sounds like we are almost in
    Sounds like we are almost in the same boat! Where should i post my area? start a new discussion? Sorry like i said i'm new to this LOL. I never would have thought to look for an oncologist with a "specialty", wasn't aware they existed, just thought an oncologist was an oncologist. Ive learned so much today!

    Our kids are the same age. I'm so grateful for the early diagnosis as well. Thanks for all your help and i'm always here as someone who can relate! Don't forget that! I wish you peace and comfort and laughter beyond what is considered normal..laughter until your belly hurts...thats the real antidote for any situation in life. It hurts me to laugh right now because of the pain but by God i do it anyways!

    K
  • Minnesota Girl
    Minnesota Girl Member Posts: 119
    #19
    Kwilliams630 said:

    Sounds like we are almost in
    Sounds like we are almost in the same boat! Where should i post my area? start a new discussion? Sorry like i said i'm new to this LOL. I never would have thought to look for an oncologist with a "specialty", wasn't aware they existed, just thought an oncologist was an oncologist. Ive learned so much today!

    Our kids are the same age. I'm so grateful for the early diagnosis as well. Thanks for all your help and i'm always here as someone who can relate! Don't forget that! I wish you peace and comfort and laughter beyond what is considered normal..laughter until your belly hurts...thats the real antidote for any situation in life. It hurts me to laugh right now because of the pain but by God i do it anyways!

    K

    Just do it
    K -

    As you can surmise, I DID go ahead with an oncologist. It was clear in meeting with the urologist this week that the oncologist is being MUCH more aggressive in follow-up than the urologist would have been. That alone reinforced we made the right choice.

    Additionally, my oncologist participates in a lot of research, so he knows the latest on trials, drug therapies, etc. He talked about a recent study they completed that is now being analyzed. If it shows promise in preventing recurrence, he will get me on the protocol.

    So, I say GO FOR IT!
  • BG
    BG Member Posts: 85 Member
    #20
    Minnesota Girl said:

    Just do it
    K -

    As you can surmise, I DID go ahead with an oncologist. It was clear in meeting with the urologist this week that the oncologist is being MUCH more aggressive in follow-up than the urologist would have been. That alone reinforced we made the right choice.

    Additionally, my oncologist participates in a lot of research, so he knows the latest on trials, drug therapies, etc. He talked about a recent study they completed that is now being analyzed. If it shows promise in preventing recurrence, he will get me on the protocol.

    So, I say GO FOR IT!

    preventing re-occurence
    Hi Minnesota Girl,

    I will see my oncologist this comming Monday for the first time. I am trying to put together a list of questions and was wondering if you knew what drug was used for the re-occurence study that is being analyzed?

    I will ask my oncologist if this is something to consider for me. Also, if anyone can think of pertinent questions for the oncologist I would appreciate it.

    Thanks,

    BG
  • Minnesota Girl
    Minnesota Girl Member Posts: 119
    #21
    BG said:

    preventing re-occurence
    Hi Minnesota Girl,

    I will see my oncologist this comming Monday for the first time. I am trying to put together a list of questions and was wondering if you knew what drug was used for the re-occurence study that is being analyzed?

    I will ask my oncologist if this is something to consider for me. Also, if anyone can think of pertinent questions for the oncologist I would appreciate it.

    Thanks,

    BG

    Don't have the name of the drug
    Sorry BG. I didn't get the name of the drug. That particular study is closed now, anyhow. Maybe just ask your doc how they approach clinicals and if you will be considered as a participant.

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