Reassurances and a few suggestions needed

Kantbe
Kantbe Member Posts: 14
in Kidney Cancer #1

Hi all,

I had my first visit with the RCC specialist oncologist today (2 weeks/3 days post op - full radical nephrectomy) and he has suggested that I start on Votrient rather than Sutent due to the 'kinder' side effects, the grading and aggressiveness of the cancer. Start of treatment is delayed until Monday as Voltrient slows down wound healing. Has anyone else started on Votrient? I am a little concerned as he indicated that the clinical studies provide only 8-10 months stable and then I would need to change to IL-2 and maybe Opdivo. I asked about other possibilities, including clinical trials and he said he didn't have access to any, that I would need to leave the private system (paid by my employer) to access any clinical trials. He was actually really good at explaining the entire process, therapies etc but I am concerned that his focus seems to be so limited. He is also the first dr that made me feel like this is going to kill me sooner rather than later as my options are so limited. Please reassure me that I can hold this **** cancer at bay! 

My questions are: Votrient as first line defence - reasonable option? Should I be challenging for a second opinion, perhaps with a dr who has access to clinical trials etc? Are my options really this limited? 

i would really appreciate any feedback. I promise that I am normally not this needy, today kinda brought it all home. I know that I can do this. I just need to make sure that I have the best tools to fight. 

Thank you.

Dani

Comments

  • Eliezer2
    Eliezer2 Member Posts: 85
    #2
    stay on it as long as you can

    till it stops working (may be many years) or ubness you develp mets

  • Jojo61
    Jojo61 Member Posts: 1,309 Member
    #3
    Hi Dani,That really sounds

    Hi Dani,

    That really sounds like a very discouraging doctor visit. Before I had my nephrectomy, I was referred to a highly regarded urologist in the city (because my tumor was so large - also 13 cm - he referred me to another doctor in another city) but he looked at my CT scan and said "if this is stage 4, you are a goner". I said "what??". He repeated it again. I was very surprised to hear those words (not to mention the professional manner they were delivered) as everything I read about kidney cancer was pretty encouraging....and that was from the stuff I read on this CSN site.

    Sometimes I think that doctors get stuck in a knowledge rut. He knew stats - but from 15 years ago, and didn't bother to re-educate himself. I believe the same about your doctor. I have not been on any drugs as yet, so I could not offer you any advice on that one - but others will.

    I just could not let you feel needlessly discouraged! Lots of people here are stage 4 and doing very well. You CAN do this! You have a great attitude and that is the number one tool you need to fight this!! And you have US!! LOL. We are a pretty powerful group. Hange in there, Dani!!

    Hugs

    Jojo

     

  • Dutch1
    Dutch1 Member Posts: 152
    #4
    I was found to be stage 4 at

    I was found to be stage 4 at the time of my surgery, 38 months ago.  My tumor was as large as yours and had spread to nearby lymph nodes and the adrenal.  Yours had spread further than mine.  Otherwise, we're fairly similar.  Once my cancer reappeared (18 months after surgery), I was put on Sutent.  It worked at stabalizing or reducing the cancer for about a year.  After a year, a new spot showed up and I was moved to Votrient.  I am having trouble with tolerating the higher doseages of the drug.  The first scan after going on Votrient was OK.  No magic remission, just more of holding everything at bay.

    I haven't heard the negative comments which you have been subjected to.  Stage 4 is dangerous territory to be in, but I'm already beyond the survival timeframe which my surgeon (the most negative of my team) had quoted to us back at the time of the surgery.  My oncologist is more encouraging.  It does seem that the statistics are a little old and don't reflect recent improvements in treatment.  I understand that there are a few more options ahead of me than what your doctor has told you.  Maybe my oncologist is hiding that fact from me ... he usually isn't that type, though.

    My suggestion is that you look for a second opinion at a specialty type health care provider.  I have another oncologist with whom I have sought second opinions at major decision points.  My main oncologist has no problem with that.  In fact, he encourages it.

    Dutch

  • donna_lee
    donna_lee Member Posts: 1,042 Member
    #5
    Dutch1 said:

    I was found to be stage 4 at

    I was found to be stage 4 at the time of my surgery, 38 months ago.  My tumor was as large as yours and had spread to nearby lymph nodes and the adrenal.  Yours had spread further than mine.  Otherwise, we're fairly similar.  Once my cancer reappeared (18 months after surgery), I was put on Sutent.  It worked at stabalizing or reducing the cancer for about a year.  After a year, a new spot showed up and I was moved to Votrient.  I am having trouble with tolerating the higher doseages of the drug.  The first scan after going on Votrient was OK.  No magic remission, just more of holding everything at bay.

    I haven't heard the negative comments which you have been subjected to.  Stage 4 is dangerous territory to be in, but I'm already beyond the survival timeframe which my surgeon (the most negative of my team) had quoted to us back at the time of the surgery.  My oncologist is more encouraging.  It does seem that the statistics are a little old and don't reflect recent improvements in treatment.  I understand that there are a few more options ahead of me than what your doctor has told you.  Maybe my oncologist is hiding that fact from me ... he usually isn't that type, though.

    My suggestion is that you look for a second opinion at a specialty type health care provider.  I have another oncologist with whom I have sought second opinions at major decision points.  My main oncologist has no problem with that.  In fact, he encourages it.

    Dutch

    I seem to be missing something...

    Yes, I was Dx'd at Stage 4 ten years ago, as they had already found the huge mass in my kidney and in my liver.  During the 11 1/2 hr surgery the right kidney, left half of liver, set of nodes (2/11 positive) wre removed.  I was never offered any drug treatments as it was felt there was no active site that could be monitored.  At that time, even Sutent was still in a Stage 3 trial, and IL 2 wasn't even brought up.

    At 9 years and then 8 years ago, single nodes were found to be enlarging and either a biopsy or a PET scan proved they were likely positive for a recurrence of the cancer.  Both times, the single nodes were removed...so it's been almost 8 years of NED.

    It seems the Dr's are giving drugs before they even know the cancer has spread to other organs.  Is this a jump to a conclusion on my part?   Why would your dr. begin a drug immediately following surgery, if there was no evidence of Mets?  Or is there a Mets?  And when did they switch procedures to use drugs for prevention of spread of the kidney cancer?  Just asking!

    donna_lee

     

     

  • jason.2835
    jason.2835 Member Posts: 337 Member
    #6
    Mets?

    Hi, Dani,

    I'll preface by saying I'm a Stage 1 patient and have no experience in further treatment beyond surgery.  That being said, I've done a fair amount of research and I read almost everything on this board and I have to echo what other have said...  I would CERTAINLY get another opinion, and for ONE REASON....

    You're not comfortable!  You should be 100% comfortable about your care and your team.  If you don't think your doctor is prepared to fight for you than you need a new doctor.  

    Let's be real for just a second.  Cancer sucks, right?  We all know that it's far better to not have it then to have it.  However, there is NO REASON in the world why a doctor should be negative with a patient about their prognosis, even if it's not good.  The best doctors are the ones who keep coming up with options to fight, not "hoping" that this will work or that will work... But saying, "there's always another option to try."  It's what keeps us going because there is always hope that someone will unlock a cure; cancer research grows by leaps and bounds every day!  Immunotherapy seems extremely promising.

    So, long story short, find a doctor who gives you HOPE, not WORRY.

    - Jay 

     

  • Kantbe
    Kantbe Member Posts: 14
    #7
    donna_lee said:

    I seem to be missing something...

    Yes, I was Dx'd at Stage 4 ten years ago, as they had already found the huge mass in my kidney and in my liver.  During the 11 1/2 hr surgery the right kidney, left half of liver, set of nodes (2/11 positive) wre removed.  I was never offered any drug treatments as it was felt there was no active site that could be monitored.  At that time, even Sutent was still in a Stage 3 trial, and IL 2 wasn't even brought up.

    At 9 years and then 8 years ago, single nodes were found to be enlarging and either a biopsy or a PET scan proved they were likely positive for a recurrence of the cancer.  Both times, the single nodes were removed...so it's been almost 8 years of NED.

    It seems the Dr's are giving drugs before they even know the cancer has spread to other organs.  Is this a jump to a conclusion on my part?   Why would your dr. begin a drug immediately following surgery, if there was no evidence of Mets?  Or is there a Mets?  And when did they switch procedures to use drugs for prevention of spread of the kidney cancer?  Just asking!

    donna_lee

     

     

    Mets

    Hi Donna,

    Sorry I should have included that the cancer has already spread to my lymph nodes (abdomen and chest) and into my lungs which is why the Onc is suggesting that we go after it hard and fast. 

    Dani

  • Kantbe
    Kantbe Member Posts: 14
    #8
    Sorry

    I should clarify that the cancer had already spread prior to surgery. I have hot spots on the renal floor, two large lymph nodes in abdomen (not collected during surgery), all lymphoma nodes in chest/back and multiple spots in both lungs Which is why the Onc want us to go after this hard and fast. 

  • Kantbe
    Kantbe Member Posts: 14
    #9
    Jojo61 said:

    Hi Dani,That really sounds

    Hi Dani,

    That really sounds like a very discouraging doctor visit. Before I had my nephrectomy, I was referred to a highly regarded urologist in the city (because my tumor was so large - also 13 cm - he referred me to another doctor in another city) but he looked at my CT scan and said "if this is stage 4, you are a goner". I said "what??". He repeated it again. I was very surprised to hear those words (not to mention the professional manner they were delivered) as everything I read about kidney cancer was pretty encouraging....and that was from the stuff I read on this CSN site.

    Sometimes I think that doctors get stuck in a knowledge rut. He knew stats - but from 15 years ago, and didn't bother to re-educate himself. I believe the same about your doctor. I have not been on any drugs as yet, so I could not offer you any advice on that one - but others will.

    I just could not let you feel needlessly discouraged! Lots of people here are stage 4 and doing very well. You CAN do this! You have a great attitude and that is the number one tool you need to fight this!! And you have US!! LOL. We are a pretty powerful group. Hange in there, Dani!!

    Hugs

    Jojo

     

    Thank you

    Thank you for the encouragement! I really, really appreciate it.

  • Kantbe
    Kantbe Member Posts: 14
    #10
    Dutch1 said:

    I was found to be stage 4 at

    I was found to be stage 4 at the time of my surgery, 38 months ago.  My tumor was as large as yours and had spread to nearby lymph nodes and the adrenal.  Yours had spread further than mine.  Otherwise, we're fairly similar.  Once my cancer reappeared (18 months after surgery), I was put on Sutent.  It worked at stabalizing or reducing the cancer for about a year.  After a year, a new spot showed up and I was moved to Votrient.  I am having trouble with tolerating the higher doseages of the drug.  The first scan after going on Votrient was OK.  No magic remission, just more of holding everything at bay.

    I haven't heard the negative comments which you have been subjected to.  Stage 4 is dangerous territory to be in, but I'm already beyond the survival timeframe which my surgeon (the most negative of my team) had quoted to us back at the time of the surgery.  My oncologist is more encouraging.  It does seem that the statistics are a little old and don't reflect recent improvements in treatment.  I understand that there are a few more options ahead of me than what your doctor has told you.  Maybe my oncologist is hiding that fact from me ... he usually isn't that type, though.

    My suggestion is that you look for a second opinion at a specialty type health care provider.  I have another oncologist with whom I have sought second opinions at major decision points.  My main oncologist has no problem with that.  In fact, he encourages it.

    Dutch

    May I ask

    May I ask what you started on and what the argument was for the choice? My Onc is offering Votrient as the first line of defence.

    Dani

  • Kantbe
    Kantbe Member Posts: 14
    #11
    jason.2835 said:

    Mets?

    Hi, Dani,

    I'll preface by saying I'm a Stage 1 patient and have no experience in further treatment beyond surgery.  That being said, I've done a fair amount of research and I read almost everything on this board and I have to echo what other have said...  I would CERTAINLY get another opinion, and for ONE REASON....

    You're not comfortable!  You should be 100% comfortable about your care and your team.  If you don't think your doctor is prepared to fight for you than you need a new doctor.  

    Let's be real for just a second.  Cancer sucks, right?  We all know that it's far better to not have it then to have it.  However, there is NO REASON in the world why a doctor should be negative with a patient about their prognosis, even if it's not good.  The best doctors are the ones who keep coming up with options to fight, not "hoping" that this will work or that will work... But saying, "there's always another option to try."  It's what keeps us going because there is always hope that someone will unlock a cure; cancer research grows by leaps and bounds every day!  Immunotherapy seems extremely promising.

    So, long story short, find a doctor who gives you HOPE, not WORRY.

    - Jay 

     

    Thank you

    Thank you for validating what I was thinking about the need to be confident in my dr...I need a dr who is confident in my ability to fight this as well. 

  • medic1971
    medic1971 Member Posts: 225 Member
    #12
    Hi Dani

    Welcome and sorry you are here.  

    Here is my opinion...

    American Urological Association estimates the average urologist sees six cancer and non-cancer kidney tumor cases a year, find someone who sees more than 6 a year, please.

    Find the nearest major cancer hospital and get on the phone and go there.  I just did a quick search for kidney cancer at https://clinicaltrials.gov/ and found 1009 open clinical trials and studies.

     

    If you worry about making your doctor mad, DON'T.  This is your life, your health, and your future.  Fight for it if you have to.  

    Keep us posted and please don't apologize for wanting help Smile

     

    Good luck,

    Jason

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