New member (unfortunately)

dl650a
dl650a Member Posts: 37
Hello,

Unfortunately, I am a new member of this group. Last Thursday, I was diagnosed with RCC. It was an incidental find while looking for a reason for low blood iron. The final follow-up was a CT scan last Thursday morning. When I had a call from the Dr by noon to come in for a visit that afternoon, I knew things were not good.

The only good thing is that it appears to be confined to the right kidney and there is no apparent spreading to adjacent organs or lymph nodes. Right now, I'm waiting to see a 2nd urologist, who will likely be doing the surgery.

Take care.
«1

Comments

  • icemantoo
    icemantoo Member Posts: 3,361 Member
    Welcome to the club
    dl650a,

    What a bummer. Finding out you have RCC and then the next words are surgery. Sure was not fun for me 9 and 1/2 years ago. I do not want to impose, but what is the size of your tumor? With that information those on this board can respond more appropriately and directly to you.

    Best wishes,


    Icemantoo
  • icemantoo
    icemantoo Member Posts: 3,361 Member
    Welcome to the club
    dl650a,

    What a bummer. Finding out you have RCC and then the next words are surgery. Sure was not fun for me 9 and 1/2 years ago. I do not want to impose, but what is the size of your tumor? With that information those on this board can respond more appropriately and directly to you.

    Best wishes,


    Icemantoo
  • icemantoo
    icemantoo Member Posts: 3,361 Member
    Welcome to the club
    dl650a,

    What a bummer. Finding out you have RCC and then the next words are surgery. Sure was not fun for me 9 and 1/2 years ago. I do not want to impose, but what is the size of your tumor? With that information those on this board can respond more appropriately and directly to you.

    Best wishes,


    Icemantoo
  • lawmanmike
    lawmanmike Member Posts: 29
    You are in good company here!
    I'm sorry you've had to join us but so far the news sounds pretty good - actually almost identical to the news I got a few short months ago. Mine was also discovered accidentally and was also confined to the right kidney without metastisis. Mine was in the lower part of the right kidney positioned perfectly for open partial nephrectomy which was done on January 12 and frankly, the recovery hasn't been nearly as bad as I thought it would be. I'm five weeks out and the doctor is confident they got it all out (ended up stage 1 grade 3) and I am effectively cured...low risk of recurrence and I feel great.

    It is definitely scary - especially in the beginning - but it is completely doable! My best advice - find a surgeon with a great track record - ask questions about how many procedures he/she has done and how many bad outcomes... I think it is crucial to trust the person whose hands you are placing your life and future in. If you are anywhere near upstate NY - I can recommend someone.

    Best of luck to you - please keep us posted and let us know if you have any questions!
  • dl650a
    dl650a Member Posts: 37

    You are in good company here!
    I'm sorry you've had to join us but so far the news sounds pretty good - actually almost identical to the news I got a few short months ago. Mine was also discovered accidentally and was also confined to the right kidney without metastisis. Mine was in the lower part of the right kidney positioned perfectly for open partial nephrectomy which was done on January 12 and frankly, the recovery hasn't been nearly as bad as I thought it would be. I'm five weeks out and the doctor is confident they got it all out (ended up stage 1 grade 3) and I am effectively cured...low risk of recurrence and I feel great.

    It is definitely scary - especially in the beginning - but it is completely doable! My best advice - find a surgeon with a great track record - ask questions about how many procedures he/she has done and how many bad outcomes... I think it is crucial to trust the person whose hands you are placing your life and future in. If you are anywhere near upstate NY - I can recommend someone.

    Best of luck to you - please keep us posted and let us know if you have any questions!

    Thanks everyone for the good
    Thanks everyone for the good thoughts and wishes. I received news for the date of surgery, it will be four weeks from today. Waiting will be hard, but at least things are now moving.

    Lawmanmike,
    I am originally from upstate NY (Binghamton area) but live out on the west coast now, in Oregon.
  • lawmanmike
    lawmanmike Member Posts: 29
    dl650a said:

    Thanks everyone for the good
    Thanks everyone for the good thoughts and wishes. I received news for the date of surgery, it will be four weeks from today. Waiting will be hard, but at least things are now moving.

    Lawmanmike,
    I am originally from upstate NY (Binghamton area) but live out on the west coast now, in Oregon.

    Glad to hear it!
    Albany area here...could have recommended my Urologic Oncologist - he is great. At my follow up I told him I don't know how to thank him and he actually thanked me - said I gave his life meaning! Can you imagine? I'm surprised we didn't hug. It's nice to know some doctors genuinely care! I hope you have found someone like that in Oregon!

    4 weeks will fly by... will be a good time to get things in order since you will be unable to do most of your normal things in the weeks following surgery. Clear your plate, focus your mind, exercise, and try to relax... it will all be okay! Arranging for someone to stay with you and help you after the surgery is a good idea too. My sister moved in with us (we have a 3 year old) and stayed for 3 weeks to help me out when I would have otherwise been home alone during the weekdays. I definitely needed it the first couple weeks...

    Will be sending happy thoughts and prayers your way! If you have questions before or after - please post. Be well!
  • Jeff2159
    Jeff2159 Member Posts: 108
    icemantoo said:

    Welcome to the club
    dl650a,

    What a bummer. Finding out you have RCC and then the next words are surgery. Sure was not fun for me 9 and 1/2 years ago. I do not want to impose, but what is the size of your tumor? With that information those on this board can respond more appropriately and directly to you.

    Best wishes,


    Icemantoo

    Joining the Club
    Looks like I have a new journey to travel. I have been fighting tongue cancer for almost 20 yrs as I have had 8-10 related surguries and luckily they have all been stage 1 with the last being this past December and January. Never have done chemo or radiation but was sent to radiologist and she had me do a PET scan (first time)prior to my new radiation treatment,and I got clean bill of health for my tongue and mouth-- yea buttttttt, and the reason I'm here, there was a mass found in my left kidney 6.2 x 5.7 cm. All surrounding areas of the kidney were clean so it seems everything is contained but go to new doctor this coming thursday. As far as health,, 53, male, 225 lbs, active, light beer and wine drinker and have never smoked in my life. I can only laugh and worry about something else. Seems I'm taking alot of body blows but avoiding the knockout shot. Just as long this doesn't mess with my golf game
  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    Jeff2159 said:

    Joining the Club
    Looks like I have a new journey to travel. I have been fighting tongue cancer for almost 20 yrs as I have had 8-10 related surguries and luckily they have all been stage 1 with the last being this past December and January. Never have done chemo or radiation but was sent to radiologist and she had me do a PET scan (first time)prior to my new radiation treatment,and I got clean bill of health for my tongue and mouth-- yea buttttttt, and the reason I'm here, there was a mass found in my left kidney 6.2 x 5.7 cm. All surrounding areas of the kidney were clean so it seems everything is contained but go to new doctor this coming thursday. As far as health,, 53, male, 225 lbs, active, light beer and wine drinker and have never smoked in my life. I can only laugh and worry about something else. Seems I'm taking alot of body blows but avoiding the knockout shot. Just as long this doesn't mess with my golf game

    Golf!
    Oh no, Jeff, not yet another golfer! I'm beginning to think golf might be bad for one's kidneys! Still, I'll keep on playing as long as I have one kidney left.

    Seriously though, it sounds as if you've been pretty unlucky. You'll already know a lot of the stuff people could tell you here and, if you go for surgery, it'll be a cake-walk (except for the couple of days after surgery which most of us found rough). It's important that you keep as active and fit as possible meanwhile. The outline lawmanmike has just given (below) to dl650a is sound general advice and, as he says, you will be welcome here for continuing advice and support.
  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    Jeff2159 said:

    Joining the Club
    Looks like I have a new journey to travel. I have been fighting tongue cancer for almost 20 yrs as I have had 8-10 related surguries and luckily they have all been stage 1 with the last being this past December and January. Never have done chemo or radiation but was sent to radiologist and she had me do a PET scan (first time)prior to my new radiation treatment,and I got clean bill of health for my tongue and mouth-- yea buttttttt, and the reason I'm here, there was a mass found in my left kidney 6.2 x 5.7 cm. All surrounding areas of the kidney were clean so it seems everything is contained but go to new doctor this coming thursday. As far as health,, 53, male, 225 lbs, active, light beer and wine drinker and have never smoked in my life. I can only laugh and worry about something else. Seems I'm taking alot of body blows but avoiding the knockout shot. Just as long this doesn't mess with my golf game

    Golf!
    See post below!
  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    Jeff2159 said:

    Joining the Club
    Looks like I have a new journey to travel. I have been fighting tongue cancer for almost 20 yrs as I have had 8-10 related surguries and luckily they have all been stage 1 with the last being this past December and January. Never have done chemo or radiation but was sent to radiologist and she had me do a PET scan (first time)prior to my new radiation treatment,and I got clean bill of health for my tongue and mouth-- yea buttttttt, and the reason I'm here, there was a mass found in my left kidney 6.2 x 5.7 cm. All surrounding areas of the kidney were clean so it seems everything is contained but go to new doctor this coming thursday. As far as health,, 53, male, 225 lbs, active, light beer and wine drinker and have never smoked in my life. I can only laugh and worry about something else. Seems I'm taking alot of body blows but avoiding the knockout shot. Just as long this doesn't mess with my golf game

    Golf!
    See post below - CSN, could we please have a facility to delete duplicate postings, or is such programming too difficult to implement?
  • Limelife50
    Limelife50 Member Posts: 476

    Golf!
    Oh no, Jeff, not yet another golfer! I'm beginning to think golf might be bad for one's kidneys! Still, I'll keep on playing as long as I have one kidney left.

    Seriously though, it sounds as if you've been pretty unlucky. You'll already know a lot of the stuff people could tell you here and, if you go for surgery, it'll be a cake-walk (except for the couple of days after surgery which most of us found rough). It's important that you keep as active and fit as possible meanwhile. The outline lawmanmike has just given (below) to dl650a is sound general advice and, as he says, you will be welcome here for continuing advice and support.

    Yuck golf
    Don't worry about the golf Texas ,I think golf is both boring and silly and I still got cancer,so keep on swinging those clubs
  • Jeff2159
    Jeff2159 Member Posts: 108

    Golf!
    Oh no, Jeff, not yet another golfer! I'm beginning to think golf might be bad for one's kidneys! Still, I'll keep on playing as long as I have one kidney left.

    Seriously though, it sounds as if you've been pretty unlucky. You'll already know a lot of the stuff people could tell you here and, if you go for surgery, it'll be a cake-walk (except for the couple of days after surgery which most of us found rough). It's important that you keep as active and fit as possible meanwhile. The outline lawmanmike has just given (below) to dl650a is sound general advice and, as he says, you will be welcome here for continuing advice and support.

    Golf
    OK TW, give me the bad news. How long does it take to recover so one can play 18 holes?
  • jm3114
    jm3114 Member Posts: 8
    dl650a said:

    Thanks everyone for the good
    Thanks everyone for the good thoughts and wishes. I received news for the date of surgery, it will be four weeks from today. Waiting will be hard, but at least things are now moving.

    Lawmanmike,
    I am originally from upstate NY (Binghamton area) but live out on the west coast now, in Oregon.

    Hang in there
    Sorry you had to join the club.I was diagnosed with a 3.2cm on my right kidney purely by accident on 12/23/11.I had a partial nephrectomy on 1/24/12.It is almost 4 weeks now and I feel pretty good.The tumor was removed (stage 1) and I have clear margins.The thing I wanted to bring out is how lucky I feel and thats how I am looking at this.I think that what helped me greatly was reading the stories on this website.How encouraging is it to listen to people who have had this done years ago and continue to give advice and support.I know that waiting is tough but you will find great comfort in the experiences of the seasoned veterans.
    John
  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    Jeff2159 said:

    Golf
    OK TW, give me the bad news. How long does it take to recover so one can play 18 holes?

    Golf
    Limelife50, golf is certainly a silly game (most players will know what I mean!) but it's anything but boring to play. I'll keep swinging alright - when I stop it'll be as a result of failure of my body, not of my will. I hope you're biking again and managing to spot potholes in time. By the way, I know you've turned 50 but what's the rest of the interesting moniker all about? Are you a shooter?

    Jeff, by common consent 6 weeks should do it, but of course we're all different. We're both non-smokers but you're 53 and 225 and I'm 69 and 150. [Path report showed I had a 9cm. tumour that was stage 4 and grade 4, no longer contained and mostly sarcomatoid - not a pretty profile.] I carefully left it 7 weeks before I resumed playing 18 holes on the Championship course at Carnoustie. Although I've never regarded golf as exercise, I'm a 'grip it and rip it' type golfer and didn't want to take chances on a hernia.

    For what it's worth, now at 11 weeks post op I play 18 4 times a week very comfortably (but in years gone by a few times I played 6 rounds over a weekend). I'm also working out on an elliptical cross-trainer and I've managed 15,000 metres rowing in the past few days so walking around 6 miles on a golf course and waving my arms about a bit isn't at all tiring.

    Since you're still an active guy, coupled with what you've had to endure over the past 20 years, I reckon you'll cope well with what life is going to throw at you next and I wish you the very best in handling it.
  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    Jeff2159 said:

    Golf
    OK TW, give me the bad news. How long does it take to recover so one can play 18 holes?

    Golf
    Limelife50, golf is certainly a silly game (most players will know what I mean!) but it's anything but boring to play. I'll keep swinging alright - when I stop it'll be as a result of failure of my body, not of my will. I hope you're biking again and managing to spot potholes in time. By the way, I know you've turned 50 but what's the rest of the interesting moniker all about? Are you a shooter?

    Jeff, by common consent 6 weeks should do it, but of course we're all different. We're both non-smokers but you're 53 and 225 and I'm 69 and 150. [Path report showed I had a 9cm. tumour that was stage 4 and grade 4, no longer contained and mostly sarcomatoid - not a pretty profile.] I carefully left it 7 weeks before I resumed playing 18 holes on the Championship course at Carnoustie. Although I've never regarded golf as exercise, I'm a 'grip it and rip it' type golfer and didn't want to take chances on a hernia.

    For what it's worth, now at 11 weeks post op I play 18 4 times a week very comfortably (but in years gone by a few times I played 6 rounds over a weekend). I'm also working out on an elliptical cross-trainer and I've managed 15,000 metres rowing in the past few days so walking around 6 miles on a golf course and waving my arms about a bit isn't at all tiring.

    Since you're still an active guy, coupled with what you've had to endure over the past 20 years, I reckon you'll cope well with what life is going to throw at you next and I wish you the very best in handling it.
  • garym
    garym Member Posts: 1,647

    Yuck golf
    Don't worry about the golf Texas ,I think golf is both boring and silly and I still got cancer,so keep on swinging those clubs

    YUCK???
    There is another word that rhymes with yuck often heard on the golf course, perhaps you were confused?
  • dl650a
    dl650a Member Posts: 37
    Date set for surgery along with a few questions
    Well,I now have a date set for surgery. The worst part will be waiting another 3-1/2 weeks. I meet with the surgeon in another week and then surgery is scheduled for 3/16. Trying to keep + and not get too wrapped up yet. As I get closer to surgery, there will be plenty of time. It sounds like I am a good candidate for laparoscopy. Hopefully, they will be able to complete the surgery this way and not have to go to open.

    What is pain control like for laparoscopy? I had bilateral knee replacement 4 years ago and was on oxycodone for almost 4 weeks. From what I hear, the laparoscopic surgery should not be this bad. As an engineer, I drive a desk, so at this point I've told my boss that I will be out of work for 3-4 weeks (knowing that full recovery will longer).

    Does anyone here ride motorcycles? Have you kept riding?

    Many many questions.
  • icemantoo
    icemantoo Member Posts: 3,361 Member
    dl650a said:

    Date set for surgery along with a few questions
    Well,I now have a date set for surgery. The worst part will be waiting another 3-1/2 weeks. I meet with the surgeon in another week and then surgery is scheduled for 3/16. Trying to keep + and not get too wrapped up yet. As I get closer to surgery, there will be plenty of time. It sounds like I am a good candidate for laparoscopy. Hopefully, they will be able to complete the surgery this way and not have to go to open.

    What is pain control like for laparoscopy? I had bilateral knee replacement 4 years ago and was on oxycodone for almost 4 weeks. From what I hear, the laparoscopic surgery should not be this bad. As an engineer, I drive a desk, so at this point I've told my boss that I will be out of work for 3-4 weeks (knowing that full recovery will longer).

    Does anyone here ride motorcycles? Have you kept riding?

    Many many questions.

    Desk job
    dl650a,

    Having a desk job makes it easier to get back to work. However at 3-4 weeks you may not feel like working full time. I worked part time starting at about 2 or 2 weeks and full time as 6 weeks approached. Having a desk job and working for yourself made it easier for me. A lot depends on your age and general health. Others can chime in with their own experiences. My surgery was laproscopic and I was 59 years old then.


    Icemantoo
  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    dl650a said:

    Date set for surgery along with a few questions
    Well,I now have a date set for surgery. The worst part will be waiting another 3-1/2 weeks. I meet with the surgeon in another week and then surgery is scheduled for 3/16. Trying to keep + and not get too wrapped up yet. As I get closer to surgery, there will be plenty of time. It sounds like I am a good candidate for laparoscopy. Hopefully, they will be able to complete the surgery this way and not have to go to open.

    What is pain control like for laparoscopy? I had bilateral knee replacement 4 years ago and was on oxycodone for almost 4 weeks. From what I hear, the laparoscopic surgery should not be this bad. As an engineer, I drive a desk, so at this point I've told my boss that I will be out of work for 3-4 weeks (knowing that full recovery will longer).

    Does anyone here ride motorcycles? Have you kept riding?

    Many many questions.

    Bikes
    "Does anyone here ride motorcycles?" Huh!

    Listen, dl650a, to be a really fully credentialed member of this club you need to live in Michigan, play golf and ride a Harley (you can be of any gender). Ideally you'll also be called Gar(r)y or Larry. You can get in for sure if you have any of those characteristics, otherwise you have to go the surgical route. However, you are probably entitled to an exemption on the grounds of being an engineer.

    Not everyone can live in Michigan - just as well - and there are be-nighted souls here who don't torture themselves on the golf course. Some of us only just scrape in e.g. I live in Scotland, not Michigan, and don't have a bike. Also I'm a lawyer by training, not an engineer (no exemptions for lawyers, but we're working on it) but I play golf so I qualify. i've thought about getting a Harley but it seems it's only really necessary for the diagnosis stage - you hit a pothole, crash, have to have a CT scan and, Bob's your uncle, you find out for free that you have renal cell carcinoma!

    In any case, all my contemporaries had Norton Commandos or Vincent Black Shadows but, my home town being Enfield, I'd have wanted a Royal Enfield. Post-war my parents could only afford to buy me a bicycle with 3 gears but I stuck with it and riding in hilly countryside was good training for the thighs for weight-lifting and rowing!. Also, when you came off it you got bruises and grazes, not cancer!

    Since you're a newcomer (sorry you needed to join us) I should explain that there are a few private jokes above - more information available from the likes of Garry iceman, Garym and Larry Fox. They and the rest of the gang here can advise you on the less serious stuff like preparation, surgery and recovery - all pretty minor. In fact, it'll be a piece of cake for you by lap. or even open surgery, compared with the knee ops.

    In terms of attitude, planning and realistic expectations, you seem to have it all taped but when this is becoming a distant memory, in a few weeks time, you must remember not to drive your desk into a pothole.

    I apologise for the seriousness of the tone of this message and I hope it hasn't depressed you but, as you see, joining this club is not a laughing matter :-)

    TW
  • garym
    garym Member Posts: 1,647

    Bikes
    "Does anyone here ride motorcycles?" Huh!

    Listen, dl650a, to be a really fully credentialed member of this club you need to live in Michigan, play golf and ride a Harley (you can be of any gender). Ideally you'll also be called Gar(r)y or Larry. You can get in for sure if you have any of those characteristics, otherwise you have to go the surgical route. However, you are probably entitled to an exemption on the grounds of being an engineer.

    Not everyone can live in Michigan - just as well - and there are be-nighted souls here who don't torture themselves on the golf course. Some of us only just scrape in e.g. I live in Scotland, not Michigan, and don't have a bike. Also I'm a lawyer by training, not an engineer (no exemptions for lawyers, but we're working on it) but I play golf so I qualify. i've thought about getting a Harley but it seems it's only really necessary for the diagnosis stage - you hit a pothole, crash, have to have a CT scan and, Bob's your uncle, you find out for free that you have renal cell carcinoma!

    In any case, all my contemporaries had Norton Commandos or Vincent Black Shadows but, my home town being Enfield, I'd have wanted a Royal Enfield. Post-war my parents could only afford to buy me a bicycle with 3 gears but I stuck with it and riding in hilly countryside was good training for the thighs for weight-lifting and rowing!. Also, when you came off it you got bruises and grazes, not cancer!

    Since you're a newcomer (sorry you needed to join us) I should explain that there are a few private jokes above - more information available from the likes of Garry iceman, Garym and Larry Fox. They and the rest of the gang here can advise you on the less serious stuff like preparation, surgery and recovery - all pretty minor. In fact, it'll be a piece of cake for you by lap. or even open surgery, compared with the knee ops.

    In terms of attitude, planning and realistic expectations, you seem to have it all taped but when this is becoming a distant memory, in a few weeks time, you must remember not to drive your desk into a pothole.

    I apologise for the seriousness of the tone of this message and I hope it hasn't depressed you but, as you see, joining this club is not a laughing matter :-)

    TW

    WOW...
    And I thought my biography would take longer, huh. See, that's why there is no exemption for lawyers here.

    dl650a,

    I was back driving my desk two weeks after 2 surgeries in-spite of the injuries resulting from the motorcycle accident that saved my life, your time table should work out fine.

    Good luck,

    Gary