Wisdom Needed

sab04
sab04 Member Posts: 4
in Kidney Cancer #1

First of all, thank you to everyone who posts on this board.  I have been a lurker on and off for a little over two years and have learned so much from all of you.  

I first came here when my dad was diagnosed with RCC in April of 2012.  He had his kidney removed in May of 2012.  I do not have the report, but I did get some information from my mom a little while ago.  His tumor was 6.5.6.6 cm, clear cell renal call carcinoma, T1b NX MO.  It appeared to have been taken out with clear margins. 

For the past two years, he has had follow-up visits with NED.  

That all changed two weeks ago when he saw his urologist after having a chest x-ray and abdominal CT. The CT showed that two of the lymph nodes where the kidney was removed now appear to be cancerous. His uroligist said they were around 1.25cm each. As far as we know, it has not spread anywhere else. 

Today he went to see his oncologist (who does not specialize in renal cancers) and he suggested:

  • Clinical Trial
  • Votrient
  • Highdose IL-2

He also suggested my dad go to a University Research Hospital.  The locations suggested to him because of location (Southern Illinois) were University of Louisville, Indiana University, Washington University (St. Louis), and Vanderbilt.

I guess what I am looking for is suggestions from you all.  We are just so unsure where to go from here and what he should try.  His oncologist was very unhelpful and didn't give any clear direction.  Have any of you had experiences with any of these hospitals or treatments for this kind of recurrence? I will take any advice you can give me. 

His doctor is wanting to do a chest CT and a biopsy of the lymph nodes sometime soon. 

Thank you so much for listening.  

Comments

  • icemantoo
    icemantoo Member Posts: 3,361 Member
    #2
    My 2 cents

    Sab04,

     

    My ex son in law did a Fellowship in Interventional Radiology at Washingtom University in St Louis. They are affiliated with Barnes Jewish Hospital which is ranked 15th in the country for Urology and 21st in the country for Cancer. This is a top notch hospital and is the top Hospital in St Louis and for the State of Missouri. I do not know anything about the others.

     

    As far as a chest CT I have had a few of them for other than RCC issues. They will show nodules in the lung not visable on a chest x-ray and which are many times too small to be concerned with.

     

    I wish I could make sugestions on the other issues, but they are beyond my experience or pay grade.

     

    Good luck

     

    Icemantoo

  • sab04
    sab04 Member Posts: 4
    #3
    icemantoo said:

    My 2 cents

    Sab04,

     

    My ex son in law did a Fellowship in Interventional Radiology at Washingtom University in St Louis. They are affiliated with Barnes Jewish Hospital which is ranked 15th in the country for Urology and 21st in the country for Cancer. This is a top notch hospital and is the top Hospital in St Louis and for the State of Missouri. I do not know anything about the others.

     

    As far as a chest CT I have had a few of them for other than RCC issues. They will show nodules in the lung not visable on a chest x-ray and which are many times too small to be concerned with.

     

    I wish I could make sugestions on the other issues, but they are beyond my experience or pay grade.

     

    Good luck

     

    Icemantoo

    just what I was looking for

    Thank you so much! We were leaning toward the St. Louis area... That information makes me feel better about possibly choosing Washington University. 

  • Galrim
    Galrim Member Posts: 315 Member
    #4

    Hi Sab,

    Step one: Get an experienced RCC oncologist ASAP.

    As to what path to take the number of options are multiple (another reason to get an experienced RCC onc on board).

    First of all (and Im not an urologist/oncologist I just read too much about RCC), a T1B clear cell with clear margins and no local lymph node involvement at the time of surgery and for two years down the road, is relatively unusual as to it having a local recurrence or lymph node mets. It happens, but its rare (less unusual if your dads histology showed several independent prognostic features but you dont mention any).

    Based on that I would expect an experienced rcc onc would recommend biopsy or surgical complete removal to be sure what youre actually dealing with here (if possible).

    Secondarily, no matter what reasoning you are given about what treatment to take, be scrutenizing about their recommendations. Have in mind that surgical resection and IL-2 HD are the only two options when it comes to having a chance of longtime durable response, i.e. "cure".

    The potential use of those two options needs to be exhausted before you move onto to life-prolonging treatment, tyrosine kinase inhibitors etc.

    /G 

  • dhs1963
    dhs1963 Member Posts: 513
    #5
    Galrim said:

    Hi Sab,

    Step one: Get an experienced RCC oncologist ASAP.

    As to what path to take the number of options are multiple (another reason to get an experienced RCC onc on board).

    First of all (and Im not an urologist/oncologist I just read too much about RCC), a T1B clear cell with clear margins and no local lymph node involvement at the time of surgery and for two years down the road, is relatively unusual as to it having a local recurrence or lymph node mets. It happens, but its rare (less unusual if your dads histology showed several independent prognostic features but you dont mention any).

    Based on that I would expect an experienced rcc onc would recommend biopsy or surgical complete removal to be sure what youre actually dealing with here (if possible).

    Secondarily, no matter what reasoning you are given about what treatment to take, be scrutenizing about their recommendations. Have in mind that surgical resection and IL-2 HD are the only two options when it comes to having a chance of longtime durable response, i.e. "cure".

    The potential use of those two options needs to be exhausted before you move onto to life-prolonging treatment, tyrosine kinase inhibitors etc.

    /G 

    Surgery is needed...

    Biopsy first, to make sure it is RCC, and not a lymphoma or other reasons why lymph nodes would grow.  If they are two isolated mets, I would advice taking them out....then he would be NED.  And watch every three months.  Donna_lee and I are both currently NED with mRCC with the only trewatment being surgery.

    As my medical oncologist says (Dr. Hans Hammers)...as long as the mets are isolated, surgeyr is the preferred treatment.

    My thoracic surgeoun describes me as a whack-a-mole patient.  As one pops up they cut it out.  If that changes, I still have all of the medical options available. 

  • sab04
    sab04 Member Posts: 4
    #6
    Galrim said:

    Hi Sab,

    Step one: Get an experienced RCC oncologist ASAP.

    As to what path to take the number of options are multiple (another reason to get an experienced RCC onc on board).

    First of all (and Im not an urologist/oncologist I just read too much about RCC), a T1B clear cell with clear margins and no local lymph node involvement at the time of surgery and for two years down the road, is relatively unusual as to it having a local recurrence or lymph node mets. It happens, but its rare (less unusual if your dads histology showed several independent prognostic features but you dont mention any).

    Based on that I would expect an experienced rcc onc would recommend biopsy or surgical complete removal to be sure what youre actually dealing with here (if possible).

    Secondarily, no matter what reasoning you are given about what treatment to take, be scrutenizing about their recommendations. Have in mind that surgical resection and IL-2 HD are the only two options when it comes to having a chance of longtime durable response, i.e. "cure".

    The potential use of those two options needs to be exhausted before you move onto to life-prolonging treatment, tyrosine kinase inhibitors etc.

    /G 

    Thank you for the advice.

    Thank you for the advice.  We are going to try to get him in to see a rcc onc very soon.  His current oncologist doesn't think surgery is an option because of the location.  I am hoping a different opinion might change that but I am not so sure that will happen.

    Do you have any experience with the IL-2 HD?  My dad is very nervous about that treatment because of how sick you get.  

  • GSRon
    GSRon Member Posts: 1,303 Member
    #7
    First of all, he needs to see

    First of all, he needs to see an Oncoliogist that specializes in RCC (Kidney Cancer).  This is very important.  Next, that Dr will likely review the scans, but I wonder if those scans are of much value.  Should have a CT (with contrast if possible) that includes the chest.  An X-ray won't usually see enough.  The skill of the Radiologist is important, so if possible getting the scans done where the Radiologist has some RCC experience is best.  OR get copies of the scans for a second opinion.  

    IF there are only two affected Nodes and all else is clear, perhaps (depending on his general health) better to get those two nodes removed, then they can cut, slice, and dice them at their leisure.  Keep in mind a biopsy is not 100%, far from it.  A biopsy can confirm it is Cancer and what type, but then it may be suggested to have the surgery anyway..  The other three options are all great options, especially if there are other Mets found.  However getting back to NED status would usually be best.  Again there are other factors that we do not know...  So first get him to a RCC doctor...

    Ron

  • sab04
    sab04 Member Posts: 4
    #8
    GSRon said:

    First of all, he needs to see

    First of all, he needs to see an Oncoliogist that specializes in RCC (Kidney Cancer).  This is very important.  Next, that Dr will likely review the scans, but I wonder if those scans are of much value.  Should have a CT (with contrast if possible) that includes the chest.  An X-ray won't usually see enough.  The skill of the Radiologist is important, so if possible getting the scans done where the Radiologist has some RCC experience is best.  OR get copies of the scans for a second opinion.  

    IF there are only two affected Nodes and all else is clear, perhaps (depending on his general health) better to get those two nodes removed, then they can cut, slice, and dice them at their leisure.  Keep in mind a biopsy is not 100%, far from it.  A biopsy can confirm it is Cancer and what type, but then it may be suggested to have the surgery anyway..  The other three options are all great options, especially if there are other Mets found.  However getting back to NED status would usually be best.  Again there are other factors that we do not know...  So first get him to a RCC doctor...

    Ron

    Good Plans

    We are praying the RCC Onc we get him in to will want to try to operate.  I am not sure which artery his current doctor said the nodes are close to, but that is why he will not operate.  

    Thanks to all of your replies and God Bless you all! 

  • danbren2
    danbren2 Member Posts: 311
    #9
    sab04 said:

    Good Plans

    We are praying the RCC Onc we get him in to will want to try to operate.  I am not sure which artery his current doctor said the nodes are close to, but that is why he will not operate.  

    Thanks to all of your replies and God Bless you all! 

    RCC Specialist First

    Sabo4,

         I would definately get scheduled with an RCC Oncologist first, get the test done that he wants, then make a decision.  Please do not act on just your Urologist diagnosis!

                                         Wishing you good results, and prayers for good health!

                                           Brenda

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