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New member (unfortunately)

dl650a
Posts: 31
Joined: Feb 2012

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.

icemantoo's picture
icemantoo
Posts: 1528
Joined: Jan 2010

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's picture
icemantoo
Posts: 1528
Joined: Jan 2010

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's picture
icemantoo
Posts: 1528
Joined: Jan 2010

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

Jeff2159's picture
Jeff2159
Posts: 73
Joined: Feb 2012

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's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

See post below!

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

See post below - CSN, could we please have a facility to delete duplicate postings, or is such programming too difficult to implement?

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

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.

Limelife50's picture
Limelife50
Posts: 411
Joined: Nov 2011

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

garym's picture
garym
Posts: 1651
Joined: Nov 2009

There is another word that rhymes with yuck often heard on the golf course, perhaps you were confused?

Jeff2159's picture
Jeff2159
Posts: 73
Joined: Feb 2012

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

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

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's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

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.

lawmanmike's picture
lawmanmike
Posts: 29
Joined: Jan 2012

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
Posts: 31
Joined: Feb 2012

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's picture
lawmanmike
Posts: 29
Joined: Jan 2012

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!

jm3114
Posts: 8
Joined: Jan 2012

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

dl650a
Posts: 31
Joined: Feb 2012

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's picture
icemantoo
Posts: 1528
Joined: Jan 2010

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's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

"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's picture
garym
Posts: 1651
Joined: Nov 2009

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

foxhd's picture
foxhd
Posts: 1899
Joined: Oct 2011

I was still pretty weak when I went for my first ride. My wife remarked on my "**** eatin' grin!' when I came home. Then I played golf. Had some strong desire to go to Michigan. Whats up with that?

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Fox, you're doing so well, please don't put it all at risk by going to Michigan!

garym's picture
garym
Posts: 1651
Joined: Nov 2009

You'll be fine...might look a bit odd wearing your haz-mat suit on a Harley, but you'll be fine...trust me!

dl650a
Posts: 31
Joined: Feb 2012

Sorry folks. I don't ride a Harley. Those of you who ride other bikes may recognize my screen name as a V-strom 650 (great touring/adventure bike for the northwest). I feel strange, I've never had an overwhelming desire to go to Michigan...it may have something to do from when I was an engineer for the Corps of Engineers and had to go to Saulte Ste Marie (or the Soo in the UP for you Michiganders), several years in a row, always in the middle of winter.

Hoping to get back riding by mid- to late May.

garym's picture
garym
Posts: 1651
Joined: Nov 2009

dl,

I'll ride with anybody on two wheels although my penchant for falling down seems to scare them away ha, ha. Hey, there's been some flak in these parts lately about Michi"gander" being sexist, though I don't see it since I like to gander at the scenery, but Michiganian is the pc term now. I think some lawyers must be behind it.

Keep the rubber side down,

Gary

foxhd's picture
foxhd
Posts: 1899
Joined: Oct 2011

I like all bikes. My favorite rally every year is a Brit-Jam. Also go to whats called Rice-O -Rama. But I gotta have my Harley. I like snarling at kids and little old ladies at stop lights. Hell, if I didn't have a Harley, I might shave!

dl650a
Posts: 31
Joined: Feb 2012

I stand corrected and promise to never use the non-pc term again.

Just trying to get in some riding before surgery. I suspect I may not be on the bike for a coupe of months. The nice thing in Oregon, where I live, is that "winter" weather is usually warm enough to ride but with rain. Today, my ride to work was 33° this morning with showers (not the most fun), but it was a nice ride home.

Ed

rae_rae's picture
rae_rae
Posts: 266
Joined: Oct 2010

I'll stick with Michigander! Michiganian just isn't right.

garym's picture
garym
Posts: 1651
Joined: Nov 2009

all the way on that!

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