Newbie just diagnosed 2/27

cboone75
cboone75 Member Posts: 43
in Kidney Cancer #1
Hello, crazy things happening this year. Just turned 36 two months ago and I'm getting married in two months from now (5/5/12)to a wonderful woman. After going to my doctor for what I thought was a sports related injury to my ribs, I found out after the ultrasound and MRI that I have a 20cm mass Renal cell carcinoma. Just waiting for the CT Scan to be scheduled and the blood work. The first urologist told me I could probably wait until after the wedding (it's a destination wedding) but I'm not sure? Seeking a second opion as soon as possible. Just curious if anyone could tell me anythign about time between diagnosis and surgery and the recovery time after the surgery.
I'm hoping that being in very good shape and relatively speaking good health will help with my recovery time.

Thanks in advance for any responses and hope all are well.
Chris
«13

Comments

  • icemantoo
    icemantoo Member Posts: 3,361 Member
    #2
    I hope you have a typo on your post
    Chris,

    Welcome to the club. At 20 cm the Urologist would have you in for emergency surgery. At 2.0 cm he would have told you that you can wait. Assuming it is 2.0 cm, while you could wait it would probably be better to get it behind you. A 2.0 cm tumor could early should result in close to a 100% full recovery. Get the CT scan ASAP. It is more accurate in determining the size and type of tumor. The final size of the tumor is determined after surgery as the ultra sound and CT measurement are not 100% accurate. Good luck. See if you can get the surgery real quick as about 6 weeks after surgery yu will feel a lot better. Extreme sports are a no no for at leat 6 months after surgery. Keep us advised. You will get a lot of help on this board.

    Best wishes,

    Icemantoo
  • cboone75
    cboone75 Member Posts: 43
    #3
    icemantoo said:

    I hope you have a typo on your post
    Chris,

    Welcome to the club. At 20 cm the Urologist would have you in for emergency surgery. At 2.0 cm he would have told you that you can wait. Assuming it is 2.0 cm, while you could wait it would probably be better to get it behind you. A 2.0 cm tumor could early should result in close to a 100% full recovery. Get the CT scan ASAP. It is more accurate in determining the size and type of tumor. The final size of the tumor is determined after surgery as the ultra sound and CT measurement are not 100% accurate. Good luck. See if you can get the surgery real quick as about 6 weeks after surgery yu will feel a lot better. Extreme sports are a no no for at leat 6 months after surgery. Keep us advised. You will get a lot of help on this board.

    Best wishes,

    Icemantoo

    20cm is correct
    Unfortunately, that was not a typo. 20cm right kidney. I called and got in to see the cheif urologist at the Lahey Clinic just outside of Boston. Not sure if it is the size of this but they basically got me in as quickly as possible. I'll post an update of what this doctor says.
  • icemantoo
    icemantoo Member Posts: 3,361 Member
    #4
    cboone75 said:

    20cm is correct
    Unfortunately, that was not a typo. 20cm right kidney. I called and got in to see the cheif urologist at the Lahey Clinic just outside of Boston. Not sure if it is the size of this but they basically got me in as quickly as possible. I'll post an update of what this doctor says.

    Get the surgery over with
    Chris

    At 20 cm your tumor is large and the longer it remains the more there is a chance of it spreading. Get it out ASAP. The wedding can wait . This is more important.

    Bet wishes,

    Icemantoo
  • Michael6701
    Michael6701 Member Posts: 26
    #5
    cboone75 said:

    20cm is correct
    Unfortunately, that was not a typo. 20cm right kidney. I called and got in to see the cheif urologist at the Lahey Clinic just outside of Boston. Not sure if it is the size of this but they basically got me in as quickly as possible. I'll post an update of what this doctor says.

    20cm?
    cboone, that is one very large tumor. I just looked up the normal size of a kidney and it is 10-13cm in length and 5-7.5cm in width. I just had a 5.0cm removed with an open partial last June. I was in very good physical condition and it was relatively simple and painless, but it did incapacitate me for couple of weeks and restrict me somewhat for about a month more. I was playing golf within that timeframe. If you had a 2.0 cm tumor as suggested above you would probably be looking at something similar. However, at 20cm that would seem to be larger than most kidneys. It is good that you are getting an early appointment.
  • garym
    garym Member Posts: 1,647
    #6
    icemantoo said:

    Get the surgery over with
    Chris

    At 20 cm your tumor is large and the longer it remains the more there is a chance of it spreading. Get it out ASAP. The wedding can wait . This is more important.

    Bet wishes,

    Icemantoo

    DO NOT WAIT!!!
    Apparently you have no other symptoms yet which is a good sign, but at 20cm you have a much higher risk that it has spread or will very soon and time is of the essence. Get it out the sooner the better and hopefully while surgery is all you will need. Then you can turn the wedding into a true celebration of life.

    Good luck and Godspeed,

    Gary
  • myboys2
    myboys2 Member Posts: 50
    #7
    Other Tests
    I would also encourage you to make sure they do all the other types of tests they go along with kidney cancers. Lung, head, lymph, bone etc. That is a rather large tumor. My son was up and about in 2 weeks after his full neph, which I expect you would receive judging by the size and he is 21. Great shape etc like you. He was completely restored in about 6 weeks. I would agree with others, get that ugly monster out because of its size.
  • cww71964
    cww71964 Member Posts: 97
    #8
    myboys2 said:

    Other Tests
    I would also encourage you to make sure they do all the other types of tests they go along with kidney cancers. Lung, head, lymph, bone etc. That is a rather large tumor. My son was up and about in 2 weeks after his full neph, which I expect you would receive judging by the size and he is 21. Great shape etc like you. He was completely restored in about 6 weeks. I would agree with others, get that ugly monster out because of its size.

    asap
    Get it out asap. Hopefully, it is a benign growth but you still want it out fast. I had a 4cm and had a laproscopic neprectomy and was back to work in 3 weeks, today is 6 weeks and I feel pretty good. I am tempted to ski this weekend. With yours being so large, you will probably need an open procedure so recovery time may be longer. Being young and in shape certainly helps. You will be in my prayers and I truly hope you are recovered by your wedding.

    Best of luck,
    Wayne
  • foxhd
    foxhd Member Posts: 3,181 Member
    #9
    cww71964 said:

    asap
    Get it out asap. Hopefully, it is a benign growth but you still want it out fast. I had a 4cm and had a laproscopic neprectomy and was back to work in 3 weeks, today is 6 weeks and I feel pretty good. I am tempted to ski this weekend. With yours being so large, you will probably need an open procedure so recovery time may be longer. Being young and in shape certainly helps. You will be in my prayers and I truly hope you are recovered by your wedding.

    Best of luck,
    Wayne

    ? 20
    Welcome, I think. Sorry. At 20cm, you are twice the size of most of us have been. And not all of us are out of the woods. GET it out next week!!!! Plenty of time to recover before your wedding where you will be in good health. Get aggressive with your doctors. Take no chances. This is not like taking a chance on a stock investment where you can afford to lose.
  • newenglandguy
    newenglandguy Member Posts: 66
    #10
    cww71964 said:

    asap
    Get it out asap. Hopefully, it is a benign growth but you still want it out fast. I had a 4cm and had a laproscopic neprectomy and was back to work in 3 weeks, today is 6 weeks and I feel pretty good. I am tempted to ski this weekend. With yours being so large, you will probably need an open procedure so recovery time may be longer. Being young and in shape certainly helps. You will be in my prayers and I truly hope you are recovered by your wedding.

    Best of luck,
    Wayne

    Hope your second opinion is other than another Urologist
    Cboone - hopefully your second opinion is not another Urologist. You should be seeing a Nephrologist, or better yet, an RCC specialist. On the size, there is a chance they'll want to shrink the tumor. Alot depends on the location of the mass and if it encroaches the vena cava or other organs. When is your second opinion? If you don't mind, keep us informed as you're on this path.
    Priorities should be Kidney #1, Wedding #2.
  • livealive
    livealive Member Posts: 127
    #11
    Get the number right
    Have you see the Ultrasound report ? Have they done a CT ? How do they know 20 ? Ultrasound is usually approximate size, and I have learned to not trust them as much. So first, get the size right. 20cm is unlikely, though possible. If it is 20, please remove it, ASAP, if not NOW.
  • NewE2012
    NewE2012 Member Posts: 7
    #12
    livealive said:

    Get the number right
    Have you see the Ultrasound report ? Have they done a CT ? How do they know 20 ? Ultrasound is usually approximate size, and I have learned to not trust them as much. So first, get the size right. 20cm is unlikely, though possible. If it is 20, please remove it, ASAP, if not NOW.

    Boston
    Chris,
    I'm in the Boston area and had a hand assisted lap 3 months ago for a 5cm tumor, I'm 31. We're in MA and have access to some of the best doctors, but in case you need a second or third opinion, my urologist/surgeon is great and I can give you his info.

    Best of luck,
    E
  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    #13
    NewE2012 said:

    Boston
    Chris,
    I'm in the Boston area and had a hand assisted lap 3 months ago for a 5cm tumor, I'm 31. We're in MA and have access to some of the best doctors, but in case you need a second or third opinion, my urologist/surgeon is great and I can give you his info.

    Best of luck,
    E

    Operation and wedding
    Well, Chris, you hoped for responses and you sure got a lot of advice, vey rapidly and all of it good. For what one more opinion's worth, I think iceman made the crucial comment (and not for the first time!) when he said "The wedding can wait . This is more important." As garym added, if you crack on with surgery asap there's a good chance your wedding plans won't be compromised but that must be a secondary consideration to looking after your health immediately.
  • cboone75
    cboone75 Member Posts: 43
    #14
    Texas_wedge said:

    Operation and wedding
    Well, Chris, you hoped for responses and you sure got a lot of advice, vey rapidly and all of it good. For what one more opinion's worth, I think iceman made the crucial comment (and not for the first time!) when he said "The wedding can wait . This is more important." As garym added, if you crack on with surgery asap there's a good chance your wedding plans won't be compromised but that must be a secondary consideration to looking after your health immediately.

    2nd opinion/surgery scheduled
    So I just got back from the Lahey Clinic in Burlington Ma. The dr. I'm seeing is from what I'm told "the best of the best". Not sure if it's appropriate to say who I'm seeing?
    They basically have rushed me through and I'm scheduled for a arterial infartion so they can stop the blood flow to the kidney this Tuesday. I have to have a CT scan of the chest and a bone scane done as well. Surgery to remove the kidney/mass is on the 29th of March. That gives me 5 weeks for recovery prior to wedding.
    I feel good and am I don't rattle much so my spirits are hard to get down. I was just disapointed when they told me I couldn't go skiing this weekend:)
  • cboone75
    cboone75 Member Posts: 43
    #15
    livealive said:

    Get the number right
    Have you see the Ultrasound report ? Have they done a CT ? How do they know 20 ? Ultrasound is usually approximate size, and I have learned to not trust them as much. So first, get the size right. 20cm is unlikely, though possible. If it is 20, please remove it, ASAP, if not NOW.

    to rhjaisingh: # is correct.
    The size, 20 cm was confirmed with the MRI. I had an ultrasound first followed by an MRI. So, while unlikely and rare, it has been confirmed.
  • foxhd
    foxhd Member Posts: 3,181 Member
    #16
    cboone75 said:

    2nd opinion/surgery scheduled
    So I just got back from the Lahey Clinic in Burlington Ma. The dr. I'm seeing is from what I'm told "the best of the best". Not sure if it's appropriate to say who I'm seeing?
    They basically have rushed me through and I'm scheduled for a arterial infartion so they can stop the blood flow to the kidney this Tuesday. I have to have a CT scan of the chest and a bone scane done as well. Surgery to remove the kidney/mass is on the 29th of March. That gives me 5 weeks for recovery prior to wedding.
    I feel good and am I don't rattle much so my spirits are hard to get down. I was just disapointed when they told me I couldn't go skiing this weekend:)

    5 weeks
    5 weeks should be plenty of time to get back in shape for the bunny hop and macarena...Do they still do these at weddings? Just get better first. That's an order!
  • cboone75
    cboone75 Member Posts: 43
    #17
    foxhd said:

    5 weeks
    5 weeks should be plenty of time to get back in shape for the bunny hop and macarena...Do they still do these at weddings? Just get better first. That's an order!

    5 weeks
    Maybe we'll have to request those be added to the song list. Getting better is top priority. Then sitting on the beach with my new wife.
  • livealive
    livealive Member Posts: 127
    #18
    cboone75 said:

    2nd opinion/surgery scheduled
    So I just got back from the Lahey Clinic in Burlington Ma. The dr. I'm seeing is from what I'm told "the best of the best". Not sure if it's appropriate to say who I'm seeing?
    They basically have rushed me through and I'm scheduled for a arterial infartion so they can stop the blood flow to the kidney this Tuesday. I have to have a CT scan of the chest and a bone scane done as well. Surgery to remove the kidney/mass is on the 29th of March. That gives me 5 weeks for recovery prior to wedding.
    I feel good and am I don't rattle much so my spirits are hard to get down. I was just disapointed when they told me I couldn't go skiing this weekend:)

    29th too far
    Hey, IMHO, 29th is too far, I don't like the risk, can they do sooner ?
  • One Lucky Girl
    One Lucky Girl Member Posts: 68
    #19
    Dance at your wedding
    Dear Chris,

    I'm really sorry to hear your news, especially that it all has to happen right before one of the biggest days of your life. But with your surgery a full 5 weeks before your wedding, I'm sure you will enjoy a wonderful day and be able to dance with your beautiful bride. Please keep us posted on your progress -- we're all rooting for you.
  • LISAinTN
    LISAinTN Member Posts: 143
    #20
    cboone75 said:

    to rhjaisingh: # is correct.
    The size, 20 cm was confirmed with the MRI. I had an ultrasound first followed by an MRI. So, while unlikely and rare, it has been confirmed.

    Hi
    cboone,

    I'm sorry you've had to join our club. Everyone here has given you great advice, but I have to especially agree with rhjaisingh. Your tumor is 10x the size that mine was and they got me in for surgery in less then 4 weeks. I think you should insist on immediate surgery. They can get you in if they really want to. Just tell them you've done some research and you are not willing to wait. I can't do much for you from here, but I will definitely be praying for you.

    Blessings,
    Lisa
  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    #21
    LISAinTN said:

    Hi
    cboone,

    I'm sorry you've had to join our club. Everyone here has given you great advice, but I have to especially agree with rhjaisingh. Your tumor is 10x the size that mine was and they got me in for surgery in less then 4 weeks. I think you should insist on immediate surgery. They can get you in if they really want to. Just tell them you've done some research and you are not willing to wait. I can't do much for you from here, but I will definitely be praying for you.

    Blessings,
    Lisa

    Tumour size
    Lisa, I agree with you completely but you are even understating the case. I don't know whether you read the discussion Gary and I had about the fact that tumours are 3-dimensional. Chris's tumour isn't actually 10 x the size of yours - believe it or not, it's 1,000 x the size of yours so the case for early surgical intervention is even stronger!!

    In one of life's amazing coincidences, I mentioned our discussion on tumour size to my Urologist and he informed me that he has put forward a proposal for a new classification of tumours based on their volume (which must be more informative than just a one-dimensional measure). When I see him, probably in a few days time, I shall try to remember to ask him if this in to be found in the medical literature (but it's possible such academic issues may be the last thing I have on my mind during that meeting).

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