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Questions for the oncologist

Terri065
Terri065 Member Posts: 81

Hi everone, we have our first post surgical appointed with the oncologist on 2/3/15.  I'm wondering what's next? At the time of surgery 4 lymph nodes were removed and came back clean. Is there still follow up treatments if no further cancer is found. Also my husband has never had a PET SCAN, shouldn't he have a baseline PET scan. Are there any questions I should make sure we ask the oncologist. Thanks, Terri

Comments

  • icemantoo
    icemantoo Member Posts: 3,358 **
    Questions for Oncologist

    Terri,

     

    First get a copy of all of your pre op scans, surgical summary, path report and discharge summary.  Read each one several times. For starters write down any and all question you have about your reports, your follow up and treatment plan if any.

     

    Others will add their thoughts. Since you had your surgery at a top hodpital I expect your Oncologist will know  what he is doing.

     

    As with any RCC where you started with a large tumor the answers may not be certain as to each of your questions.

     

    Icemantoo

  • Terri065
    Terri065 Member Posts: 81
    icemantoo said:

    Questions for Oncologist

    Terri,

     

    First get a copy of all of your pre op scans, surgical summary, path report and discharge summary.  Read each one several times. For starters write down any and all question you have about your reports, your follow up and treatment plan if any.

     

    Others will add their thoughts. Since you had your surgery at a top hodpital I expect your Oncologist will know  what he is doing.

     

    As with any RCC where you started with a large tumor the answers may not be certain as to each of your questions.

     

    Icemantoo

    Thank you Iceman. Just a

    Thank you Iceman. Just a little anxious. 

  • Terri065 said:

    Thank you Iceman. Just a

    Thank you Iceman. Just a little anxious. 

    Terri- I went to the same

    Terri- I went to the same doctor at MSKCC.  One thing you should do to help with the flow and keeping track of information is sign up for the portal at

    https://my.mskcc.org/login?RedirectURL=/  .   All of your husband's blood tests, radiology reports, etc will be uploaded here.  One item that was not uploaded to "my portal" was my pathology report, and I asked for it, and they gave it to me.   The nice thing about the portal is that you can access it from anywhere.  If you are on your way to NYC to visit the doctor, and want to check something, you can log in using your smart phone. They will encourage you to sign up because it helps with the flow of information.

    As far as what happens next with scan, in terms of types of scans and frequency, that will depend on the pathology report.  You can find a lot of information at this link from the American Urological Association--there is a LOT here, and it is good to know what classification your husband is in.

    https://www.auanet.org/education/guidelines/renal-cancer-follow-up.cfm

    I just went for my first post operation scans in early January, and I was surprised to learn that I will not get CT scans, but Ultrasound.  But I am in the lowest risk category, and I specifically asked the doctor about this during my visit. 

    One other thing that may help--I think I recall that you are from NJ.  You can schedule certain scans such as CT, ultrasound and chest Xrays at MSKCC in Basking Ridge, NJ.  In 2016, another MSKCC will open in Middeltown, NJ, right off of Exit 114 on the Parkway.  This saves time of going into the city multiple times.  Also, an easy (but expensive) way to get to MSKCC is to take the Seastreak ferry from the Highlands or Atlantic Highlands.  They drop you off at 35th street and FDR Drive--you are about 30 city short blocks south of MSKCC.  I usually walk up First Ave, but there is a city bus that will take you to where the hospital is.

    Good luck!

  • APny
    APny Member Posts: 1,995

    Terri- I went to the same

    Terri- I went to the same doctor at MSKCC.  One thing you should do to help with the flow and keeping track of information is sign up for the portal at

    https://my.mskcc.org/login?RedirectURL=/  .   All of your husband's blood tests, radiology reports, etc will be uploaded here.  One item that was not uploaded to "my portal" was my pathology report, and I asked for it, and they gave it to me.   The nice thing about the portal is that you can access it from anywhere.  If you are on your way to NYC to visit the doctor, and want to check something, you can log in using your smart phone. They will encourage you to sign up because it helps with the flow of information.

    As far as what happens next with scan, in terms of types of scans and frequency, that will depend on the pathology report.  You can find a lot of information at this link from the American Urological Association--there is a LOT here, and it is good to know what classification your husband is in.

    https://www.auanet.org/education/guidelines/renal-cancer-follow-up.cfm

    I just went for my first post operation scans in early January, and I was surprised to learn that I will not get CT scans, but Ultrasound.  But I am in the lowest risk category, and I specifically asked the doctor about this during my visit. 

    One other thing that may help--I think I recall that you are from NJ.  You can schedule certain scans such as CT, ultrasound and chest Xrays at MSKCC in Basking Ridge, NJ.  In 2016, another MSKCC will open in Middeltown, NJ, right off of Exit 114 on the Parkway.  This saves time of going into the city multiple times.  Also, an easy (but expensive) way to get to MSKCC is to take the Seastreak ferry from the Highlands or Atlantic Highlands.  They drop you off at 35th street and FDR Drive--you are about 30 city short blocks south of MSKCC.  I usually walk up First Ave, but there is a city bus that will take you to where the hospital is.

    Good luck!

    Provided it hasn't spread

    Provided it hasn't spread anywhere there is no further treatment except check ups and monitoring. How frequently and what type of monitoring I would think will depend on the path report (stage, grade, etc.) I'm also Doctor Russo's patient and was diagnosed stage 1 so my follow up is a chest x-ray, ultra sound, and blood test every six months, except my PCP does blood tests every 3 months because I had severe anemia where I needed blood transfusion and iron infusions. I know they use PET scans but I haven't read about too many people having had them on this forum and I don't think MSK will order one just for baseline.

  • Terri065
    Terri065 Member Posts: 81

    Terri- I went to the same

    Terri- I went to the same doctor at MSKCC.  One thing you should do to help with the flow and keeping track of information is sign up for the portal at

    https://my.mskcc.org/login?RedirectURL=/  .   All of your husband's blood tests, radiology reports, etc will be uploaded here.  One item that was not uploaded to "my portal" was my pathology report, and I asked for it, and they gave it to me.   The nice thing about the portal is that you can access it from anywhere.  If you are on your way to NYC to visit the doctor, and want to check something, you can log in using your smart phone. They will encourage you to sign up because it helps with the flow of information.

    As far as what happens next with scan, in terms of types of scans and frequency, that will depend on the pathology report.  You can find a lot of information at this link from the American Urological Association--there is a LOT here, and it is good to know what classification your husband is in.

    https://www.auanet.org/education/guidelines/renal-cancer-follow-up.cfm

    I just went for my first post operation scans in early January, and I was surprised to learn that I will not get CT scans, but Ultrasound.  But I am in the lowest risk category, and I specifically asked the doctor about this during my visit. 

    One other thing that may help--I think I recall that you are from NJ.  You can schedule certain scans such as CT, ultrasound and chest Xrays at MSKCC in Basking Ridge, NJ.  In 2016, another MSKCC will open in Middeltown, NJ, right off of Exit 114 on the Parkway.  This saves time of going into the city multiple times.  Also, an easy (but expensive) way to get to MSKCC is to take the Seastreak ferry from the Highlands or Atlantic Highlands.  They drop you off at 35th street and FDR Drive--you are about 30 city short blocks south of MSKCC.  I usually walk up First Ave, but there is a city bus that will take you to where the hospital is.

    Good luck!

    Thank you so much. I

    Thank you so much. I appreciate your guidance. As you can imagine I just want to stay on top of things. 

  • Terri065
    Terri065 Member Posts: 81

    Terri- I went to the same

    Terri- I went to the same doctor at MSKCC.  One thing you should do to help with the flow and keeping track of information is sign up for the portal at

    https://my.mskcc.org/login?RedirectURL=/  .   All of your husband's blood tests, radiology reports, etc will be uploaded here.  One item that was not uploaded to "my portal" was my pathology report, and I asked for it, and they gave it to me.   The nice thing about the portal is that you can access it from anywhere.  If you are on your way to NYC to visit the doctor, and want to check something, you can log in using your smart phone. They will encourage you to sign up because it helps with the flow of information.

    As far as what happens next with scan, in terms of types of scans and frequency, that will depend on the pathology report.  You can find a lot of information at this link from the American Urological Association--there is a LOT here, and it is good to know what classification your husband is in.

    https://www.auanet.org/education/guidelines/renal-cancer-follow-up.cfm

    I just went for my first post operation scans in early January, and I was surprised to learn that I will not get CT scans, but Ultrasound.  But I am in the lowest risk category, and I specifically asked the doctor about this during my visit. 

    One other thing that may help--I think I recall that you are from NJ.  You can schedule certain scans such as CT, ultrasound and chest Xrays at MSKCC in Basking Ridge, NJ.  In 2016, another MSKCC will open in Middeltown, NJ, right off of Exit 114 on the Parkway.  This saves time of going into the city multiple times.  Also, an easy (but expensive) way to get to MSKCC is to take the Seastreak ferry from the Highlands or Atlantic Highlands.  They drop you off at 35th street and FDR Drive--you are about 30 city short blocks south of MSKCC.  I usually walk up First Ave, but there is a city bus that will take you to where the hospital is.

    Good luck!

    Thank you, this is great. I

    Thank you, this is great. I will get my husband signed up with the portal and look into the ferry. I will also find out more about Basking Ridge. 

    Thanks again, Terri

  • todd121
    todd121 Member Posts: 1,448
    Follow Up

    Please see this post:

    http://csn.cancer.org/node/288735

    I was Stage 3, and I get CT scans now of my chest/abdomen and pelvis every 6 months for years 2-3, and then annually 4-5. I see an RCC medical oncologist. I had a nuclear bone scan after my surgery as a baseline to make sure I had no bone mets.

    I see a nephrologist regularly (about every 4 months) to have my kidney checked out. She got me on a good BP medicine (I never had high BP till I lost my right kidney) that is supposed to protect my kidney as well. My vitamin D was really low after the nephrectomy, so I take 4000 IU if Vitamin D daily (the kidney is part of where vitamin D is processed so you might see vitamin D drop after a nephrectomy). She monitors my kidney function closely.

    Todd

  • Terri065
    Terri065 Member Posts: 81
    todd121 said:

    Follow Up

    Please see this post:

    http://csn.cancer.org/node/288735

    I was Stage 3, and I get CT scans now of my chest/abdomen and pelvis every 6 months for years 2-3, and then annually 4-5. I see an RCC medical oncologist. I had a nuclear bone scan after my surgery as a baseline to make sure I had no bone mets.

    I see a nephrologist regularly (about every 4 months) to have my kidney checked out. She got me on a good BP medicine (I never had high BP till I lost my right kidney) that is supposed to protect my kidney as well. My vitamin D was really low after the nephrectomy, so I take 4000 IU if Vitamin D daily (the kidney is part of where vitamin D is processed so you might see vitamin D drop after a nephrectomy). She monitors my kidney function closely.

    Todd

    Hi Todd, 
    Thank you for your

    Hi Todd, 

    Thank you for your response. Do you mind me asking how long you have been dealing with this. Also how did you go about finding a good nephrologist? My husband had issues with his B/P before surgery and it looks like he needs to change his medicine. I'm also interested in knowing if post nephrectomy / RCC patients are put on a special diet. 

     

                             Thanks again, Theresa

     

  • donna_lee
    donna_lee Member Posts: 1,018
    Terri065 said:

    Hi Todd, 
    Thank you for your

    Hi Todd, 

    Thank you for your response. Do you mind me asking how long you have been dealing with this. Also how did you go about finding a good nephrologist? My husband had issues with his B/P before surgery and it looks like he needs to change his medicine. I'm also interested in knowing if post nephrectomy / RCC patients are put on a special diet. 

     

                             Thanks again, Theresa

     

    Am I reading between the lines?

    Stage I, confined to the kidney, smaller than 7 cm. No mets to other organs or nodes??  HooRay for your side.  I would predict that he should have follow up CT's at least every 6 mo for a year or so.  Then yearly until 5 years.

    The CT's are better at catching (as in being able to note an enlargement of a node) than other tests.  A PET is not necessary at this time and is expensive.  I did have a PET, but only because the node they were trying to confirm could not be biopsied due to location.  In this case it was a confirmatory test for an already suspected mets and was mostly covered by insurance.

    Sounds like you live near a good treatment facility, also.

    Good Luck.

    Donna

  • todd121
    todd121 Member Posts: 1,448
    Terri065 said:

    Hi Todd, 
    Thank you for your

    Hi Todd, 

    Thank you for your response. Do you mind me asking how long you have been dealing with this. Also how did you go about finding a good nephrologist? My husband had issues with his B/P before surgery and it looks like he needs to change his medicine. I'm also interested in knowing if post nephrectomy / RCC patients are put on a special diet. 

     

                             Thanks again, Theresa

     

    Questions

    Hi Theresa. I had my kidney removed 2 years and 1 month ago.

    I had my surgery at a really good university teaching hospital, UCI Medical Center. My urologic oncologist referred me to one of their faculty. He was great, but unfortunately really near retirement so I only saw him a year. Now I have a young woman doctor who I really love. She's also on the faculty. If you live near a medical school, I'd look for docs on the faculty, and if not, ask your family doc or specialist to refer you to someone.

    There are lots and lots of BP meds out there. They act in different ways. It's worthwhile to see how they affect blood pressure and choose one that works for you. I almost gave up because the first two proposed by my family doctor made me feel awful. Actually, I think I tried 3. One lowered BP by reducing your heart rate. That's supposed to be great for your heart, but made me feel tired. I think that was metropolol. Another acts as a diuretic I think, which reduces sodium in your blood. I forget the name of that one. It made me feel nauseous and just not feel good. Neither did a very good job reducing my BP.

    Finally, my nephrologist recommended a drug called lisinopril. It actually protects your long kidney function in addition to lowering BP. That one has worked great. I only needed 5mg a day (a very small dose) and my BP has been great and I've had no side effects that I've noticed. They usually will monitor your kidney function when they first put you on it. You might have a slight increase in creatinine at first, but long term it's supposed to help preserve kidney function.

    I hope you found the PDF file and looked at the recommended follow ups. If you had trouble getting it, please let me know and I can get it and email it to you if you like. Message me your email address privately here on CSN and I'll send you the PDF if you like.

    Best wishes,

    Todd

  • todd121
    todd121 Member Posts: 1,448
    Terri065 said:

    Hi Todd, 
    Thank you for your

    Hi Todd, 

    Thank you for your response. Do you mind me asking how long you have been dealing with this. Also how did you go about finding a good nephrologist? My husband had issues with his B/P before surgery and it looks like he needs to change his medicine. I'm also interested in knowing if post nephrectomy / RCC patients are put on a special diet. 

     

                             Thanks again, Theresa

     

    BTW

    I can't explain the technical reason, but they don't usually do PET scans for RCC. For bone mets, the preferred imaging is a nuclear bone scan. For other organs, it's a CT scan with contrast (if possible) or just a CT scan if contrast can't be used. Occasionally an MRI if the CT is inconclusive. I rarely hear of RCC patients getting PET scans. I've never had one. Perhaps Neil will chime in and explain. I think he's explained it several times, but for some reason I can't keep the explanation in my brain.

    Less often I hear people getting ultrasounds, but this is usually just as a screening tool and not as a diagnostic tool.

    Todd

  • NanoSecond
    NanoSecond Member Posts: 653
    todd121 said:

    BTW

    I can't explain the technical reason, but they don't usually do PET scans for RCC. For bone mets, the preferred imaging is a nuclear bone scan. For other organs, it's a CT scan with contrast (if possible) or just a CT scan if contrast can't be used. Occasionally an MRI if the CT is inconclusive. I rarely hear of RCC patients getting PET scans. I've never had one. Perhaps Neil will chime in and explain. I think he's explained it several times, but for some reason I can't keep the explanation in my brain.

    Less often I hear people getting ultrasounds, but this is usually just as a screening tool and not as a diagnostic tool.

    Todd

    The problem with PET scans for mRCC

    Hi Todd.  PET scans are based on the concept that many tumors consume excess amounts of glucose.  However, most RCC tumors do not - so there is a good chance that a PET scan will miss small mets that a CT or MRI would easily catch.

  • Terri065
    Terri065 Member Posts: 81

    The problem with PET scans for mRCC

    Hi Todd.  PET scans are based on the concept that many tumors consume excess amounts of glucose.  However, most RCC tumors do not - so there is a good chance that a PET scan will miss small mets that a CT or MRI would easily catch.

    Thank you for answering the

    Thank you for answering the PET scan question. 

  • Terri065
    Terri065 Member Posts: 81
    donna_lee said:

    Am I reading between the lines?

    Stage I, confined to the kidney, smaller than 7 cm. No mets to other organs or nodes??  HooRay for your side.  I would predict that he should have follow up CT's at least every 6 mo for a year or so.  Then yearly until 5 years.

    The CT's are better at catching (as in being able to note an enlargement of a node) than other tests.  A PET is not necessary at this time and is expensive.  I did have a PET, but only because the node they were trying to confirm could not be biopsied due to location.  In this case it was a confirmatory test for an already suspected mets and was mostly covered by insurance.

    Sounds like you live near a good treatment facility, also.

    Good Luck.

    Donna

    Hi Donna,  before surgery we

    Hi Donna,  before surgery we were told by our 1st surgeon it was stage 3. The tumor was 14 cm with no lymph node involvement. We will find out more when we have our first follow up visit. Thanks for answering my questions.

  • Terri065
    Terri065 Member Posts: 81
    todd121 said:

    BTW

    I can't explain the technical reason, but they don't usually do PET scans for RCC. For bone mets, the preferred imaging is a nuclear bone scan. For other organs, it's a CT scan with contrast (if possible) or just a CT scan if contrast can't be used. Occasionally an MRI if the CT is inconclusive. I rarely hear of RCC patients getting PET scans. I've never had one. Perhaps Neil will chime in and explain. I think he's explained it several times, but for some reason I can't keep the explanation in my brain.

    Less often I hear people getting ultrasounds, but this is usually just as a screening tool and not as a diagnostic tool.

    Todd

    Thank you Todd. I've been

    Thank you Todd. I've been doing a lot of research and appreciate your help. You have all been very kind. God bless

  • foroughsh
    foroughsh Member Posts: 779
    I asked both oncologist and

    I asked both oncologist and surgeon what their preferred follow up program is for my case, it ended up different, the oncologist preferred first abdomen, pelvis, chest  CT three months post surgery then yearly but the surgeon preferred first one three months post surgery then every six months. I also talk about all detail of the pathology report just to make sure he has noticed them all and didn't miss anything, I asked about the possibility of this disease to be heredity so I can warn other family members, the proper diet and exercise,  signs and symptoms I should care,…