Just found out I have Kidney cancer

250xcfw
250xcfw Member Posts: 30
in Kidney Cancer #1
I’m amazed how conflicting the information is for a disease so well known. I don’t have all the stats on the size and level. But I can tell you there going to remove the left kidney and a small bit of the right. It doesn’t look like it’s spread to any other organs. I guess I need to learn the terminology so I can have more intelligent conversations in the future.

Thanks
John
«134

Comments

  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    #2
    Information and terminology
    Sorry you've had to join us John, but welcome anyway to this very supportive club. It's good to hear that you don't seem to have any spread to other organs.

    There are at least a couple of hundred different cancers and it's maybe an open question whether kidney cancer is one disease or many. Even if it's only one, it's very complicated and next to nothing is known for sure about it - there's a vast amount of information but that represents only a tiny fraction of what remains to be learnt and there are huge advances of knowledge going on on a daily basis.

    You'll probably quickly pick up the basic lingo. Meanwhile, you can get a lot of help here as you prepare for your surgery and recovery so do put all the questions you want to here and you're sure to get useful replies.
  • littledarlin
    littledarlin Member Posts: 102
    #3
    Welcome John
    Sorry to hear the news. No need to worry about using the right terminology. I am learning more as I read more..I am pretty new here also..Just had my surgery on Monday. Ask anything you want and someone will respond with the answers or point you in the right direction. This is a very supportive group of people. We all help each other where we can.

    Talk to you again soon..

    littledarlin
  • 250xcfw
    250xcfw Member Posts: 30
    #4
    littledarlin said:

    Welcome John
    Sorry to hear the news. No need to worry about using the right terminology. I am learning more as I read more..I am pretty new here also..Just had my surgery on Monday. Ask anything you want and someone will respond with the answers or point you in the right direction. This is a very supportive group of people. We all help each other where we can.

    Talk to you again soon..

    littledarlin

    Question and concerns
    What factors help or hinder my outcome? I’m guessing you don’t get any concrete information until after surgery?
    My Dr said I’m one of the lucky 5% that get growths on both kidneys. Has anyone here gone through this?
    As with most people here my cancer was only found by luck. I don’t have any of the high risk factors and don’t have any symptoms that I know of. Are there symptoms I should be looking for or concerned about?
    My concern isn’t dying but the affects it will have on my son who is only 9. I lost both parents at a younger age and wouldn’t wish that on anyone. I’m sure the same thoughts have gone through other parents minds, so how do you deal with it?

    Sorry for all the drama and questions.
    John
  • DDBurkhardt
    DDBurkhardt Member Posts: 13
    #5
    250xcfw said:

    Question and concerns
    What factors help or hinder my outcome? I’m guessing you don’t get any concrete information until after surgery?
    My Dr said I’m one of the lucky 5% that get growths on both kidneys. Has anyone here gone through this?
    As with most people here my cancer was only found by luck. I don’t have any of the high risk factors and don’t have any symptoms that I know of. Are there symptoms I should be looking for or concerned about?
    My concern isn’t dying but the affects it will have on my son who is only 9. I lost both parents at a younger age and wouldn’t wish that on anyone. I’m sure the same thoughts have gone through other parents minds, so how do you deal with it?

    Sorry for all the drama and questions.
    John

    I'm in the same situation as
    I'm in the same situation as you are. Had an MRI for something totally unrelated and they found a 5.3cm on my left kidney. I'm scheduled to have my left kidney removed on May 22nd. I'm relatively new here also, but it really helps talking to other people in the same situation. The people here are very happy to help you get thru this and they are a wealth of information. When are you scheduled for surgery?

    DD
  • nyc_girl
    nyc_girl Member Posts: 27
    #6
    250xcfw said:

    Question and concerns
    What factors help or hinder my outcome? I’m guessing you don’t get any concrete information until after surgery?
    My Dr said I’m one of the lucky 5% that get growths on both kidneys. Has anyone here gone through this?
    As with most people here my cancer was only found by luck. I don’t have any of the high risk factors and don’t have any symptoms that I know of. Are there symptoms I should be looking for or concerned about?
    My concern isn’t dying but the affects it will have on my son who is only 9. I lost both parents at a younger age and wouldn’t wish that on anyone. I’m sure the same thoughts have gone through other parents minds, so how do you deal with it?

    Sorry for all the drama and questions.
    John

    Hi John

    Sorry you are having to deal with this. It all seems quite overwhelming at first.
    I found out by chance in late November that i had a left kidney mass. I had an open partial nephrectomy in January. I am 43 with no risk factors. It turned out to be cancer (clear cell) stage 1, grade 3. Not the best, but not the worst either. You can find a lot of info about type, stage, and grade online. Like a lot of people here, i feel very lucky that my tumor was found early. I have recovered well from the surgery and I will need to get follow-up scans every 6 months.
    I would recommend that you find a couple of the best kidney surgeons in your area and get more than 1 opinion.
    A lot of people with kidney cancer need no further treatment after the surgery (just scans) so there is a lot of reason to be hopeful.
    Wishing you well.
  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    #7
    250xcfw said:

    Question and concerns
    What factors help or hinder my outcome? I’m guessing you don’t get any concrete information until after surgery?
    My Dr said I’m one of the lucky 5% that get growths on both kidneys. Has anyone here gone through this?
    As with most people here my cancer was only found by luck. I don’t have any of the high risk factors and don’t have any symptoms that I know of. Are there symptoms I should be looking for or concerned about?
    My concern isn’t dying but the affects it will have on my son who is only 9. I lost both parents at a younger age and wouldn’t wish that on anyone. I’m sure the same thoughts have gone through other parents minds, so how do you deal with it?

    Sorry for all the drama and questions.
    John

    Questions and concerns
    John, I can understand your present emotions. As an only child, I lost both my parents quite young (when still at university - 40-odd years ago). There's a number of factors on your side, such as being young and having no spread detected. You're correct in thinking that you won't have much more information until after your operation, when the pathology results become available.

    Meanwhile, forget about symptoms and concentrate on preparing for the surgery. Get any physical jobs you're wanting to do out of the way because it will be a few weeks after surgery before you're up to doing much of a physically demanding nature.

    Things that will affect your outcome include having a decent diet and being as fit as possible - that will have a big influence on how well and quickly you bounce back from the op. If you recover quickly that will make the whole experience easier for your Son. You sound well-balanced and composed but if you find yourself getting too uptight then some form of meditation and/or guided imagery will help to make life easier for you both, (so long as it doesn't dramatise the matter for your Family).

    Your prognosis is probably a lot better than that of many who have come through it and all here will be wishing you well and keen to give you all the support we can.
  • garym
    garym Member Posts: 1,647
    #8
    Texas_wedge said:

    Questions and concerns
    John, I can understand your present emotions. As an only child, I lost both my parents quite young (when still at university - 40-odd years ago). There's a number of factors on your side, such as being young and having no spread detected. You're correct in thinking that you won't have much more information until after your operation, when the pathology results become available.

    Meanwhile, forget about symptoms and concentrate on preparing for the surgery. Get any physical jobs you're wanting to do out of the way because it will be a few weeks after surgery before you're up to doing much of a physically demanding nature.

    Things that will affect your outcome include having a decent diet and being as fit as possible - that will have a big influence on how well and quickly you bounce back from the op. If you recover quickly that will make the whole experience easier for your Son. You sound well-balanced and composed but if you find yourself getting too uptight then some form of meditation and/or guided imagery will help to make life easier for you both, (so long as it doesn't dramatise the matter for your Family).

    Your prognosis is probably a lot better than that of many who have come through it and all here will be wishing you well and keen to give you all the support we can.

    Welcome to the club...
    Hi John,

    You have come to the right place, I stumbled onto/into this club over 2 1/2 years ago now. Diet and exercise are key factors from now on, anything you can do prior to surgery will pay dividends during recovery, a 3 or 4 mile walk every day is enough to make a difference. Hydration will be important for the rest of your expected long life, 8 x 8oz glasses of water daily is a good rule of thumb, start today, you won't be sorry. The surgery and recovery aren't fun, but it is a small price to pay compared to most, soon after you will wonder what all the fuss was about.

    Good luck and Godspeed,

    Gary
  • 250xcfw
    250xcfw Member Posts: 30
    #9
    garym said:

    Welcome to the club...
    Hi John,

    You have come to the right place, I stumbled onto/into this club over 2 1/2 years ago now. Diet and exercise are key factors from now on, anything you can do prior to surgery will pay dividends during recovery, a 3 or 4 mile walk every day is enough to make a difference. Hydration will be important for the rest of your expected long life, 8 x 8oz glasses of water daily is a good rule of thumb, start today, you won't be sorry. The surgery and recovery aren't fun, but it is a small price to pay compared to most, soon after you will wonder what all the fuss was about.

    Good luck and Godspeed,

    Gary

    Thanks
    I don't know if I'm happy or sad to see more people responding to my posts. It just makes me realize how many people are dealing with this junk. But thank you for all the positive remarks and health tips.
    I have always had an excellent diet, drink plenty of liquids,only eat meat(chicken,fish) 2-3 times per week and work out 5 days a week.
    The one thing the Dr. said was I would have to quit my hobby of motocross and gp racing. My friend called today and asked what I’m going to do without racing, I told him I'm going to find a new hobby with more thrills that won’t kill my last kidney, what I don't know!! He said, Thank god you haven’t lost my sense of humor.

    John
  • keong72
    keong72 Member Posts: 11
    #10
    250xcfw said:

    Thanks
    I don't know if I'm happy or sad to see more people responding to my posts. It just makes me realize how many people are dealing with this junk. But thank you for all the positive remarks and health tips.
    I have always had an excellent diet, drink plenty of liquids,only eat meat(chicken,fish) 2-3 times per week and work out 5 days a week.
    The one thing the Dr. said was I would have to quit my hobby of motocross and gp racing. My friend called today and asked what I’m going to do without racing, I told him I'm going to find a new hobby with more thrills that won’t kill my last kidney, what I don't know!! He said, Thank god you haven’t lost my sense of humor.

    John

    new
    John,I suggest u new hobby is riding mountain bike,,,,
  • foxhd
    foxhd Member Posts: 3,181 Member
    #11
    keong72 said:

    new
    John,I suggest u new hobby is riding mountain bike,,,,

    hobbies
    I wouldn't give up my Harley even on recommendation. Motocross? not likely. My cancer center even has a commercial of people hang gliding. Bucket list? probably. Good idea? not likely. Actually had a nice 250 mile ride sunday.
  • garym
    garym Member Posts: 1,647
    #12
    250xcfw said:

    Thanks
    I don't know if I'm happy or sad to see more people responding to my posts. It just makes me realize how many people are dealing with this junk. But thank you for all the positive remarks and health tips.
    I have always had an excellent diet, drink plenty of liquids,only eat meat(chicken,fish) 2-3 times per week and work out 5 days a week.
    The one thing the Dr. said was I would have to quit my hobby of motocross and gp racing. My friend called today and asked what I’m going to do without racing, I told him I'm going to find a new hobby with more thrills that won’t kill my last kidney, what I don't know!! He said, Thank god you haven’t lost my sense of humor.

    John

    Kevlar...
    My doc suggested a kevlar kidney belt for protection when participating in less than desirable activities for a person with one kidney.
  • lbinmsp
    lbinmsp Member Posts: 266
    #13
    Hello and welcome.
    OK - if I'm reading your post correctly - they found tumors in BOTH kidneys - resulting in a full nephrectomy on the left and a smaller tumor on the right resulting in a 'partial' of sorts there.
    Wow! You do know how to 'make an entrance' don't you? It is good news that they haven't found it anywhere else. Besides continuing to see your surgeon and/or oncologist and receive regular, thorough followup, I think I'd recommend finding a good nephrologist sooner than later. I think I'd like one person whose only job was to keep that remaining kidney super healthy.

    Keep doing your research - both online and here. Jot down every question you want answers to and keep an ongoing list. Take it to your doctor at every visit - and lastly, obtain your own copies of every scan you've had (or will have) along with every report. Include blood work results as well. You never know when you may want these things for future use. Also, they'll be a great jumping off point for yet MORE questions.

    Everyone here is on your side - holding you up. Prayers always.

    LizB
  • 250xcfw
    250xcfw Member Posts: 30
    #14
    garym said:

    Kevlar...
    My doc suggested a kevlar kidney belt for protection when participating in less than desirable activities for a person with one kidney.

    Options
    I already mountain bike,I used to do street bikes but they get you in lots of trouble fast maybe I've matured and I do wear kidney belt when I ride.
    I go in this morning to have my last CT scan, I hope everything is clear. That dye they pump into you makes me feel like poop.
    Once again thanks for the support.
    John
  • 250xcfw
    250xcfw Member Posts: 30
    #15
    lbinmsp said:

    Hello and welcome.
    OK - if I'm reading your post correctly - they found tumors in BOTH kidneys - resulting in a full nephrectomy on the left and a smaller tumor on the right resulting in a 'partial' of sorts there.
    Wow! You do know how to 'make an entrance' don't you? It is good news that they haven't found it anywhere else. Besides continuing to see your surgeon and/or oncologist and receive regular, thorough followup, I think I'd recommend finding a good nephrologist sooner than later. I think I'd like one person whose only job was to keep that remaining kidney super healthy.

    Keep doing your research - both online and here. Jot down every question you want answers to and keep an ongoing list. Take it to your doctor at every visit - and lastly, obtain your own copies of every scan you've had (or will have) along with every report. Include blood work results as well. You never know when you may want these things for future use. Also, they'll be a great jumping off point for yet MORE questions.

    Everyone here is on your side - holding you up. Prayers always.

    LizB

    Good idea
    LizB
    I do plan on getting all my scans on CD, but I did think about blood work. The sad thing is I don't even know what questions to ask!
    When I had my kidney function tested they said WOW way better than normal. So I hope it works to my favor.

    John
  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    #16
    keong72 said:

    new
    John,I suggest u new hobby is riding mountain bike,,,,

    news
    keong72, we haven't heard from you for a while. Are you still taking lots of exercise and keeping your weight down?

    How did the follow up visit to Singapore turn out? I hope it all goes well and your Family are happy about your health.
  • lbinmsp
    lbinmsp Member Posts: 266
    #17
    250xcfw said:

    Good idea
    LizB
    I do plan on getting all my scans on CD, but I did think about blood work. The sad thing is I don't even know what questions to ask!
    When I had my kidney function tested they said WOW way better than normal. So I hope it works to my favor.

    John

    Super news
    about your current kidney function!

    As for questions -

    how large are these tumors?

    where are they located (upper pole / lower / etc.)

    how long will I be in the hospital?

    will I have a drain in and if so for how long

    what's my incision(s) going to look like? (not vanity - just better to know before hand so seeing a big old incision doesn't shock you - if you indeed have one of those)?

    how will my pain be managed in hospital / going home?

    what followup schedule will I be on and what will that followup consist of (CT scans, chest x-rays, ultrasounds, etc.)?

    These are just basic start-up questions. As you search this site and do other research, you'll find you have a ton more. As I said, write them down - take your list with you to each appointment - and if your doctor can't answer a question, ask him/her who might be able to.

    We need to be our own advocates. Take nothing for granted. If an answer is given and it doesn't make sense to you - ask for a better explanation. I really believe that (good) doctors want their patients to be well informed.

    Keep on keeping on!!!!
  • Limelife50
    Limelife50 Member Posts: 476
    #18
    250xcfw said:

    Good idea
    LizB
    I do plan on getting all my scans on CD, but I did think about blood work. The sad thing is I don't even know what questions to ask!
    When I had my kidney function tested they said WOW way better than normal. So I hope it works to my favor.

    John

    hi John you are not the only one
    no John you are not alone,had a nephrectomy of my right kidnry 10/11/11 my tumor was 5cm and a grade 2,also last week i had a small tumor removed from my left kidney 1.4cm and was told i already had it, but because it was smaller 6 months ago it was overlooked.I have no evidence of the cancer anywhere else, but i have asked if i am stage 4 and have been told my cancer was more than likley unilateral which means cancer in both kidneys,problem is no one will give me this in writing.Right now i am in a holding pattern since i am still healling but once my life returns to normal i plan on seeking out a oncologist since from all my internet research i have learned that one of the places RCC will metastasize to is the other kidney and no John i am not trying to scare you i know you have enough on your plate already,more than likely our cancer is limited to our kidneys,but i think what everyone is trying to say is that we just to be on the safe side meaning we need to be aggressive in our follow ups,good luck John i am hoping for the best possible outcome for you,also get that pathology report.
  • 250xcfw
    250xcfw Member Posts: 30
    #19
    lbinmsp said:

    Super news
    about your current kidney function!

    As for questions -

    how large are these tumors?

    where are they located (upper pole / lower / etc.)

    how long will I be in the hospital?

    will I have a drain in and if so for how long

    what's my incision(s) going to look like? (not vanity - just better to know before hand so seeing a big old incision doesn't shock you - if you indeed have one of those)?

    how will my pain be managed in hospital / going home?

    what followup schedule will I be on and what will that followup consist of (CT scans, chest x-rays, ultrasounds, etc.)?

    These are just basic start-up questions. As you search this site and do other research, you'll find you have a ton more. As I said, write them down - take your list with you to each appointment - and if your doctor can't answer a question, ask him/her who might be able to.

    We need to be our own advocates. Take nothing for granted. If an answer is given and it doesn't make sense to you - ask for a better explanation. I really believe that (good) doctors want their patients to be well informed.

    Keep on keeping on!!!!

    New question
    What does the location of the tumor have to do with anything? Haven't heard this one yet?
  • 250xcfw
    250xcfw Member Posts: 30
    #20
    Limelife50 said:

    hi John you are not the only one
    no John you are not alone,had a nephrectomy of my right kidnry 10/11/11 my tumor was 5cm and a grade 2,also last week i had a small tumor removed from my left kidney 1.4cm and was told i already had it, but because it was smaller 6 months ago it was overlooked.I have no evidence of the cancer anywhere else, but i have asked if i am stage 4 and have been told my cancer was more than likley unilateral which means cancer in both kidneys,problem is no one will give me this in writing.Right now i am in a holding pattern since i am still healling but once my life returns to normal i plan on seeking out a oncologist since from all my internet research i have learned that one of the places RCC will metastasize to is the other kidney and no John i am not trying to scare you i know you have enough on your plate already,more than likely our cancer is limited to our kidneys,but i think what everyone is trying to say is that we just to be on the safe side meaning we need to be aggressive in our follow ups,good luck John i am hoping for the best possible outcome for you,also get that pathology report.

    Duel kidneys
    From the small amount of researcher I've and what my Dr told me was under 10% of all cases are duel and they may or may not be related.
    Did you have tumor removed, frozen or cooked? Which is the best method?
    How long did each of recoveries take?

    John
  • Limelife50
    Limelife50 Member Posts: 476
    #21
    250xcfw said:

    Duel kidneys
    From the small amount of researcher I've and what my Dr told me was under 10% of all cases are duel and they may or may not be related.
    Did you have tumor removed, frozen or cooked? Which is the best method?
    How long did each of recoveries take?

    John

    RFA John
    i think from all my research cryoablation has a higher success rate compared to radio frequency ablation which is the procedure i had.The reason i did RFA was because the hospital where all my records are does not perform cryoablation and i did not want to lose time trying to get everything transferred to another facillity,but RFA success rates are decent enough for smaller tumors,also the radiologist who performed the procedure informed me he has done RFA to tunors as large as 6cm with very succesfull results.

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