All you veterans!

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MDCinSC
MDCinSC CSN Member Posts: 574
in Kidney Cancer #1

My first follow up is tomorrow at 10:00.  We will be discussing pathology and follow up cycles, etc.

To refresh your memories, my path was as follows:

T1b Nx Mx, Lower pole, right 4.5 cm, CCRCC, Fuhrman grade G-3.  Proposed follow up is every 6 months with a CT on the 1 year anniversary, and each anniversary thereafter.

My question for you old hands is:

What is the question you wish you had asked that you didn't?

What is the one most important question I SHOULD be asking?

With the Fuhrman G-3, should I broach the subject of a medical oncologist?

I'll be checking in from time to time between now and morning.  Any insight or advice would be appreciated!

Tally Ho! Cool

Michael

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Comments

  • focused
    focused Member Posts: 7
    #2
    All you veterans

    I have been scheduled to have my entire kidney removed on6-25-13. This is all new stuff to me, but good luck with your follow up.

     

  • MDCinSC
    MDCinSC CSN Member Posts: 574
    #3
    focused said:

    All you veterans

    I have been scheduled to have my entire kidney removed on6-25-13. This is all new stuff to me, but good luck with your follow up.

     

    Tough admission standards

    Tough admission standards to a club you don't want to join, eh?

    I am sorry for your pending surgery, but I welcome you to the most positive group of survivors I've ever run across!  There are quite a few of us who have paid the admission fees and cling tightly to each other as close knit friends determined to weather this awful storm.  Ther are lots of open minds, hearts, and welcoming handshakes as your trip gets underway.

    Questions? This is an important place for them. We have tons of success stories to help build your confidence.  Thatis the first andmost important element in this, your confidence.

    You will come through this.  I am sure!  Talk to the whole damn family and realize there is no wrong question to ask.

    I greet you and wish you nothing but the best of all experiences with this and a speedy recovery from your surgery! 

    Peace!

    Michael

  • foxhd
    foxhd CSN Member Posts: 3,181 Member
    #4
    focused said:

    All you veterans

    I have been scheduled to have my entire kidney removed on6-25-13. This is all new stuff to me, but good luck with your follow up.

     

    What questions?

    You could ask a lot of questions. Do you need to?  See what your doctor has to tell you. Unless it is critical to make some decision on the spot, just listen. You will be having further follow ups. Decisions to issues can be made by then. So, ask easy questions about your plan of care. No need to challenge his protocol. Think about what he/she tells you. You may feel very comfortable with plan. You will probably be going back in a month anyway. Your questions will have changed and evolved by then.

  • MDCinSC
    MDCinSC CSN Member Posts: 574
    #5
    foxhd said:

    What questions?

    You could ask a lot of questions. Do you need to?  See what your doctor has to tell you. Unless it is critical to make some decision on the spot, just listen. You will be having further follow ups. Decisions to issues can be made by then. So, ask easy questions about your plan of care. No need to challenge his protocol. Think about what he/she tells you. You may feel very comfortable with plan. You will probably be going back in a month anyway. Your questions will have changed and evolved by then.

    Thanks Fox!
     

    Thanks Fox!

     

  • icemantoo
    icemantoo CSN Member Posts: 3,362
    #6
    MDCinSC said:

    Thanks Fox!
     

    Thanks Fox!

     

    Personally I think our forum posts should be required reading as part of the training of Kidney Cancer surgeons. I think they are too caught up in technical diagnosis and surgical technique.

     

     

    Icemantoo

  • MDCinSC
    MDCinSC CSN Member Posts: 574
    #7
    icemantoo said:

    Personally I think our forum posts should be required reading as part of the training of Kidney Cancer surgeons. I think they are too caught up in technical diagnosis and surgical technique.

     

     

    Icemantoo

    LOL  Like an Owner's Guide?

    LOL  Like an Owner's Guide?

  • Galrim
    Galrim Member Posts: 315 Member
    #8
    Going with Fox on this one except:

    ...for waiting a full year for the first CT scan (unless I misread that part). with a grade 3. I would ask for the detailed reasoning behind that decision, and also ask for an oncologists opinion on the mattter if your urologist hasnt already done so.

    /G

  • MDCinSC
    MDCinSC CSN Member Posts: 574
    #9
    Galrim said:

    Going with Fox on this one except:

    ...for waiting a full year for the first CT scan (unless I misread that part). with a grade 3. I would ask for the detailed reasoning behind that decision, and also ask for an oncologists opinion on the mattter if your urologist hasnt already done so.

    /G

    Good advice Galrim

    Good advice Galrim!

    It has certainly been quite an educational experience since March when I first got the news.  Makes the trauma of my PhD pale by comparison!Embarassed 

    Thank you all.  Perhaps I do tend to overanalyze, but it comes with the territory of being an educator.

    Michael

  • dhs1963
    dhs1963 CSN Member Posts: 513
    #10
    My thoughts...

    First,  since Adjuvant theropy has not proven sucessful in RCC, there is limited value in seeing a medical oncologist.  If you do, I would recomment finding one with expertese in RCC...it behaves differently than some other cancers.

    Second, I would push for a CT scan no later than 6 months, and have it be full torso (including chest).  That is because I had a met on my lung that was  seen on CT scan at 6 months.  The Dr's think it may have be present at diagnosis if a chest ct was done.

     

  • garym
    garym CSN Member Posts: 1,647
    #11
    MDCinSC said:

    LOL  Like an Owner's Guide?

    LOL  Like an Owner's Guide?

    More like a...

    "Former" Owners Guide, although you did have to pay to get ride of it.

  • Darron
    Darron Member Posts: 310 Member
    #12
    Follow Up!

    It sounds like you don't have an oncologist. I would definitely find a RCC oncologist and meet as soon as possible. I had a radical nefrectomy in October and my urologist told me he "got it all wih clean borders". His recommendation was to see an oncologist in case it ever came back, that way i would be comfortable with an oncologist Vs. finding one when I was dealing wih a recurrence.

    The oncologist reviewed my initial scaI and noticed another tumor in my remaining adrenal gland. A 2nd set of eyes never hurt anyone. i like the previous comment about listening, but don't be shy. It is your life you are asking about. There are no dumb questions. 

  • garym
    garym CSN Member Posts: 1,647
    #13
    Darron said:

    Follow Up!

    It sounds like you don't have an oncologist. I would definitely find a RCC oncologist and meet as soon as possible. I had a radical nefrectomy in October and my urologist told me he "got it all wih clean borders". His recommendation was to see an oncologist in case it ever came back, that way i would be comfortable with an oncologist Vs. finding one when I was dealing wih a recurrence.

    The oncologist reviewed my initial scaI and noticed another tumor in my remaining adrenal gland. A 2nd set of eyes never hurt anyone. i like the previous comment about listening, but don't be shy. It is your life you are asking about. There are no dumb questions. 

    Welcome...

    Hi Darron,

    While I am sorry our paths have come together thanks to RCC, it is nice to meet you anyway.  I can tell by your posts that you will fit right in around here so pull up a chair and stick around for awhile, hopefully the Sutent will continue to work and a true cure will be found in the not too distant future.  Welcome aboard.

    Did I mention cancer sucks,

    Gary

  • garym
    garym CSN Member Posts: 1,647
    #14
    Darron said:

    Follow Up!

    It sounds like you don't have an oncologist. I would definitely find a RCC oncologist and meet as soon as possible. I had a radical nefrectomy in October and my urologist told me he "got it all wih clean borders". His recommendation was to see an oncologist in case it ever came back, that way i would be comfortable with an oncologist Vs. finding one when I was dealing wih a recurrence.

    The oncologist reviewed my initial scaI and noticed another tumor in my remaining adrenal gland. A 2nd set of eyes never hurt anyone. i like the previous comment about listening, but don't be shy. It is your life you are asking about. There are no dumb questions. 

    Stuttered...

    oops

  • Darron
    Darron Member Posts: 310 Member
    #15
    garym said:

    Stuttered...

    oops

    Thanks- Hopefully not Sutent

    Thanks for the welcome. Doc seems to thinks it is the Nivolumab that is having the impact. My 6 week scan showed about a 10% growth. 12 week scan showed 30% decrease. The delayed response is more consistent with an immunity response vs. a response from Sutent. Next scan is June 6, so we are praying heavily for a continued response. I was reading the phase I results this week and a good majority of Nivo responses have been durable. only a small length of time for data (only a year) but hey I will take what positives I can get.

    The Nivolumab is much less difficult than the 50 mg of Sutent.

  • garym
    garym CSN Member Posts: 1,647
    #16
    Darron said:

    Thanks- Hopefully not Sutent

    Thanks for the welcome. Doc seems to thinks it is the Nivolumab that is having the impact. My 6 week scan showed about a 10% growth. 12 week scan showed 30% decrease. The delayed response is more consistent with an immunity response vs. a response from Sutent. Next scan is June 6, so we are praying heavily for a continued response. I was reading the phase I results this week and a good majority of Nivo responses have been durable. only a small length of time for data (only a year) but hey I will take what positives I can get.

    The Nivolumab is much less difficult than the 50 mg of Sutent.

    Yes...

    There are several here having great success with both, separately and together, very happy it is working for you too!

  • DonMiller
    DonMiller Member Posts: 109
    #17
    Surgery & Oncology

    Hi Michael

    Great Pathology report.  From everything I have read your chance of recurrent desease is quite small.  I  unfortunatly had a much larger and more advanced Grade 3 tumor. I believe my urologist is an excellent surgeon, but I am not convinced he is an excellent Doctor.  I met with an oncologist and am now being monitored by him.  I feel he is much more knowlegable about my cancer and it's interaction with other health issues.   

  • Texas_wedge
    Texas_wedge CSN Member Posts: 2,798
    #18
    DonMiller said:

    Surgery & Oncology

    Hi Michael

    Great Pathology report.  From everything I have read your chance of recurrent desease is quite small.  I  unfortunatly had a much larger and more advanced Grade 3 tumor. I believe my urologist is an excellent surgeon, but I am not convinced he is an excellent Doctor.  I met with an oncologist and am now being monitored by him.  I feel he is much more knowlegable about my cancer and it's interaction with other health issues.   

    Urologists and Oncologists

    You're undoubtedly right, Don, it's horses for courses in this game and you don't look to an oncologist to do your surgery!

  • focused
    focused Member Posts: 7
    #19
    MDCinSC said:

    Tough admission standards

    Tough admission standards to a club you don't want to join, eh?

    I am sorry for your pending surgery, but I welcome you to the most positive group of survivors I've ever run across!  There are quite a few of us who have paid the admission fees and cling tightly to each other as close knit friends determined to weather this awful storm.  Ther are lots of open minds, hearts, and welcoming handshakes as your trip gets underway.

    Questions? This is an important place for them. We have tons of success stories to help build your confidence.  Thatis the first andmost important element in this, your confidence.

    You will come through this.  I am sure!  Talk to the whole damn family and realize there is no wrong question to ask.

    I greet you and wish you nothing but the best of all experiences with this and a speedy recovery from your surgery! 

    Peace!

    Michael

    tough admission standards

    Thank you for the reply. I am a 56 yr old married male also in SC. Have two new grand children. Hope to see them grow up some. Have managed to be fairly positive so far, they found it by accident so I guess that is a good thing. Hope to talk to you again on the flip side.

    focused

  • MDCinSC
    MDCinSC CSN Member Posts: 574
    #20
    The Follow up on the Follow up!

    Okay,

    While I am reserving some options for later (oncologist etc), the plan is simply:

    Follow up and Chest X-ray every three months with CT every year til further notice and full bloodwork every time they see me.

    Fewer CTs is as a result of some massive radiation dosages I had as a child as a treatment for (of all things) ringworm on my scalp and because I used to play with fluoroscope machines in shoe shops back in the late 40's and early 50's.  The logic is they want to avoid giving me leukemia.  LOL I concur, for now.

    Her estimates were five year cancer free at about 68%  Ten year at about 40%

    She also says that I still have a decent chance at being shot by a jealous husband at the age of 93! Cool  I hope they come up with something more effective than little blue pills for that to happen!

    Outta here for now!

    PAX Y'all!  Michael

     

  • garym
    garym CSN Member Posts: 1,647
    #21
    MDCinSC said:

    The Follow up on the Follow up!

    Okay,

    While I am reserving some options for later (oncologist etc), the plan is simply:

    Follow up and Chest X-ray every three months with CT every year til further notice and full bloodwork every time they see me.

    Fewer CTs is as a result of some massive radiation dosages I had as a child as a treatment for (of all things) ringworm on my scalp and because I used to play with fluoroscope machines in shoe shops back in the late 40's and early 50's.  The logic is they want to avoid giving me leukemia.  LOL I concur, for now.

    Her estimates were five year cancer free at about 68%  Ten year at about 40%

    She also says that I still have a decent chance at being shot by a jealous husband at the age of 93! Cool  I hope they come up with something more effective than little blue pills for that to happen!

    Outta here for now!

    PAX Y'all!  Michael

     

    Sooooo...

    You've got what, 27 years to play around before you get caught...I think the jealous wife will get you first LOL.

    Seriously though, don't pay too much attention to the odds, as you know things are changing rapidly with RCC, I'd say pretty good report overall.  No worries!

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