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Newbie just diagnosed 2/27

cboone75's picture
cboone75
Posts: 23
Joined: Feb 2012

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

icemantoo's picture
icemantoo
Posts: 1511
Joined: Jan 2010

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's picture
cboone75
Posts: 23
Joined: Feb 2012

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's picture
icemantoo
Posts: 1511
Joined: Jan 2010

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

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

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

Michael6701
Posts: 26
Joined: Sep 2011

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.

myboys2's picture
myboys2
Posts: 50
Joined: Nov 2011

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's picture
cww71964
Posts: 95
Joined: Dec 2011

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's picture
foxhd
Posts: 1897
Joined: Oct 2011

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
Posts: 66
Joined: Jun 2011

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's picture
livealive
Posts: 127
Joined: Feb 2012

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
Posts: 7
Joined: Dec 2011

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's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

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's picture
cboone75
Posts: 23
Joined: Feb 2012

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:)

foxhd's picture
foxhd
Posts: 1897
Joined: Oct 2011

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's picture
cboone75
Posts: 23
Joined: Feb 2012

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's picture
livealive
Posts: 127
Joined: Feb 2012

Hey, IMHO, 29th is too far, I don't like the risk, can they do sooner ?

cboone75's picture
cboone75
Posts: 23
Joined: Feb 2012

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.

LISAinTN's picture
LISAinTN
Posts: 143
Joined: Aug 2011

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's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

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).

LISAinTN's picture
LISAinTN
Posts: 143
Joined: Aug 2011

Wow, really TX?! 1,000 times......my mouth dropped open when I read that. Then I really don't understand why his doctor's are not rushing him into surgery. Wow....

How are things going for you, TX?

Blessings,
Lisa

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

Yep, Lisa!

Of course these measurements are only approximate and tumours invariably aren't actually perfect spheres. The best guess, when one doesn't have the actual 3 dimensions, can only be based on the reported 1 dimension. So, for purposes of comparison (after cancelling out a common factor) a "2cm" tumour would have a volume of 2 x 2 x 2 = 8 cc whereas a "20 cm" tumour would be 20 x 20 x 20 = 8,000 cc. [Those volumes actually represent the cubes that would contain spheres with the given diameters but the relationship remains the same, as Gary, an engineer, confirmed in our earlier discussion, so the factor of 1,000 here is correct.] So you're dead right that they should probably get Chris in asap.

As for me, I had a first follow-up scan with contrast on Wednesday and am awaiting the results which, being realistic, will not make very comfortable reading. Thanks for asking and I hope you're going along fine yourself Lisa.

One Lucky Girl's picture
One Lucky Girl
Posts: 68
Joined: Feb 2012

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.

adobe
Posts: 72
Joined: Feb 2012

Hello cboone 75
So glad you joined this site. As you see by the immediate responses you have alot of friends out here on your team! I am new to this site also, but in a short time have received lots of information and encouragement. I am a 13 year RCC survivor, having my left kidney out in 1999. I totally agree with everyone -- GET IT DONE ASAP! Try to have you surgery date sooner then planned. You will recover, feel, better, and be ready for your wedding! Keep us posted.

adobe

foxhd's picture
foxhd
Posts: 1897
Joined: Oct 2011

Cboone, if it turns out that you don't think you can dance at your wedding, give me a call. I'll stand in for you. I think I'm only the next state over. You can save your energy for the honeymoon....Just get the damn thing out!

cboone75's picture
cboone75
Posts: 23
Joined: Feb 2012

My surgery date has been pushed up. I still have the procedure This Tuesday to cut the blood supply off to the kidney. I have to wait 7 days after that and then the surgery to remove the kidney. I just had my CT Scan done today and will have a bone scan next week. I'm a very positive person so my spirits are surpisingly very high. I like to find as much humor in things as possible and to me, this is no different, I would much rather have a few laughs with it (still know that it is very serious) than sit around and be depressed.
Foxhd...I like your attitude buddy! I would gladly have you as a dance stand in...can't be any worse than my sweet moves on the dance floor.

adobe
Posts: 72
Joined: Feb 2012

Hooray! You are on your way to recovery!!

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

Hey, while you and fox are dancin' who's watchin' the bride? You will find that laughter, your own and those around you, will serve you well as you progress through surgery, recovery, and beyond. Worrying about that which is beyond your control is a big waste of time. Don't sweat the petty things and don't pet the sweaty things (except on your honeymoon of course) is what I live by. Good luck and Godspeed.

LISAinTN's picture
LISAinTN
Posts: 143
Joined: Aug 2011

LOL, Gary! I love your sense of humor. ROFL

Blessings,
Lisa

livealive's picture
livealive
Posts: 127
Joined: Feb 2012

OK - I am glad, it was making me nervous - I was watching this thread as rhjai...then realized the whole world couod find me with my name....

You are managing this way better than I did mine, and I will keep you in my prayers and thoughts, seems there is intelligence in the universe, just not smart enough to leave alone the guys it sometimes it hits...

My best cb...

R

LISAinTN's picture
LISAinTN
Posts: 143
Joined: Aug 2011

cboone,

So glad your surgery has been moved up. Will be praying for you. Humor is a great thing! I joke and laugh about this all the time. If I didn't, you'd probably have to commit me. :oD

Blessings,
Lisa

Olsera's picture
Olsera
Posts: 38
Joined: Dec 2011

I hope you have had your surgery now & you are recovering well. I am sure you will be good & ready to dance at your wedding.

adobe
Posts: 72
Joined: Feb 2012

Great offer foxhd - what a guy!!

foxhd's picture
foxhd
Posts: 1897
Joined: Oct 2011

after all, I was class dancer in high school. Had a lot of soul. They called me "Sunshine".

newenglandguy
Posts: 66
Joined: Jun 2011

I flew to FL for a vacation 5 weeks after my surgery. Glad to hear things are moving forward, and glad the date was moved up. Who is your surgeon, and do you have an Onc as well? Nothing wrong with posting the Doctors name, as folks do it all the the time.

cboone75's picture
cboone75
Posts: 23
Joined: Feb 2012

I'm seeing Dr. Libertino at the Lahey Clinic in Burlington.

LISAinTN's picture
LISAinTN
Posts: 143
Joined: Aug 2011

Fox,

Glad you only offered to stand in for the dance. If you would have mentioned the honeymoon, I would have been a little worried. LOL

Blessings,
Lisa

foxhd's picture
foxhd
Posts: 1897
Joined: Oct 2011

I figured Gary was volunteering for that assignment. HA! HA!

LISAinTN's picture
LISAinTN
Posts: 143
Joined: Aug 2011

It did appear that way. I guess I should be worried about Gary. lol :oD

foxhd's picture
foxhd
Posts: 1897
Joined: Oct 2011

I figured Gary was volunteering for that assignment. HA! HA!

DogRescuer's picture
DogRescuer
Posts: 50
Joined: Feb 2012

Hey, Chris, wishing you the best with your upcoming milestones.

I just got out of the hospital yesterday and was very appreciative for all the great advice given by these upbeat folks. But one thing I failed to take notice of was the importance of the 'toot test.' They want all of your parts functioning before you leave the hospital and the nurse would greet me each morning with the all important question: Did you pass gas? I'd always have to answer no, but I burped. Not good enough. Finally, answered, YES, and was so proud. So I was released. sigh.

livealive's picture
livealive
Posts: 127
Joined: Feb 2012

I had a rough 3 days in the hospital, BP up and down, fever, etc. but speak the truth, you want everything working before you leave...

foxhd's picture
foxhd
Posts: 1897
Joined: Oct 2011

No one has said that this is a cake walk. Kidney cancer is a serious burden to have to deal with. We are here because we have already done it. Sucks big time. We have all been introduced to the possibility of death... So our options are to give in or push forward. That is why this is the CANCER SURVIVORS NETWORK! We may deal with stress differently, but we all want to live. Some of us just refuse to let potential demise bum us out. Attitude, attitude. We may joke. But we don't take it lightly.

Vagusto's picture
Vagusto
Posts: 86
Joined: Aug 2011

Hi Chris
I was diagnosed about 2.5 years ago(age 46) with a 19cm mass on my left kidney. Although I
try and forget the details, I think surgery was about 4-5 weeks after my diagnosis. I'm assuming you're having a radical as opposed to the robot method. The surgery itself was easy. Recovery was okay, just take it super slow. My only suggestion is to not over eat at one sitting. This can make you feel uncomfortable. Rest when you need to rest, and don't try to be superman. :)
Take Care
Valerie

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