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Who would have thought - searching for information

Getting_Ready
Posts: 8
Joined: Mar 2018

Apologize for the length in advance- What started as hematuria and diagnosis of a UTI has turned in so much more.  About two weeks ago had a strange feeling and notice blood in the urine.  I work in the business office of a large medical organzation and went to our urgent care.  The provider seemed concerned as I did not have other UTI syptoms of fever or flank plain and said I should get a full work up in Urology.  Later that evening the urgent care called me and said a prescription for an antibiotic would be at the pharmacy as my urine culture had strep in it.  Fast forward a week later, I was in a meeting with one of our nephrologist and asked him to review my urine analysis and blood work.  He seemed concerned and called up to a colleague in urology to see me right away.  On Monday I had a CT performed and Thursday had an appointment with the urologist.  I recognize that I am very fortunate to work at a large medical institution, but I also recognize that to many physicians they take emotion out of everything. 

He showed me the CT results and the several stones that I have in my left kidney that are most likely the cause of the blood in the urine.  I have lithotripsy sceheduled for April 11 to remove the stones.  He did showed me the right kidney where I have small mass growing (I say small because I do not remember the size he said I was a little out of it).  He is planning on doing a partial nephrectomy likely in July.  He said he wants the to do the lithotripsy first to get the stones out and let me recover from that to make sure the kidney is functioning the best that it can in the RARE occurence that during the partial he sees something that has him concerned and he decides to take out the whole kidney. 

In reading various literature on KC and success rates and other factors, I am seeking real world experiences from those who have expreineced.  I will say my urologist made it sound very simplistic and that he would likely just go in an "snip it off", i have seen survival rates anywhere from 70-95% for 5 years for early stage.  Is that what others and seeing?  I am a 45 y/o diabetic and wondering if others in this age group with diabetes have gone through this and what impacts they have seen.  I am also curious of those who have gone through the procedure, how long was it till they felt better and were back at work, and how long till they were feeling like they did pre-surgery.

 

I look forward to reading the other posts and learning, and thanking in advance for any answers. 

icemantoo's picture
icemantoo
Posts: 3260
Joined: Jan 2010

GR,

 

 

---to the club no one in their right mind would volunteer to join. My initiation was 15 and 1/2 years ago  when they yanked the whole kidney out. Plan on getting back to a slow normal about 6 weeks later. Let us know the size of the little bugger (mass).

 

icemantoo

Bay Area Guy's picture
Bay Area Guy
Posts: 421
Joined: Jun 2016

One of the things to realize regarding research that you do on the internet regarding any kind of cancer survival rates is that medicine has come a long, LONG way in a very short amount of time.  The internet is great at a lot of thing, but one thing it's bad at is sorting out information in a logical way.  You have to look at the dates of the studies.  Studies done even at the start of this decade are hopelessly out of date in 2018.

I had a small lesion on my right kidney that was diagnosed in late 2013 and taken out in June, 2016.  You can bet that in that time, I looked at every possible website there was, but I also talked to a number of medical professionals, including my primary care physician, a man I trust implicitly as he has never steered me wrong.  The urological oncologist he referred me to at Stanford told me that the survival rates for small lesions treated with robotic partials is somewhere in the 95-99% range these days.  The surgeon that actually took it out said that it's more in the 99% range.

Getting_Ready
Posts: 8
Joined: Mar 2018

100% agree on the variation of the stats.  I understand that everyone is individual and responds in their own way.  I have seen the 95-99% figure and that is what I am hoping for.  Look forward to journey and going in with a positive outlook.

Getting_Ready
Posts: 8
Joined: Mar 2018

Look forward to gaining insight from all on the board.  I have reached out to the urologist to get a size and will share once I hear back.

msjax
Posts: 20
Joined: Dec 2017

I recently had a partial nephrectomy in February on a "small" mass -- it grew from 1.7 cm in October to 1.9 cm in February--well within the so called "early stage".  To my surprise, I was upstaged after surgery from T1aN0MX to T3aNxMx because the tumor extended into my perirenal fat but not beyond Gerota's fascia.  Final diagnosis on the pathology report - Renal cell carcinoma (2.3 cm), chromophobe type, with focal extension into perinephric fat.  Surgery went well and I recoverd quickly--only spending 24 hours in the hospital--but I am here to say every situation is different.

Getting_Ready
Posts: 8
Joined: Mar 2018

That must have been a shock to have it upstaged.  Hopefully all is well and thank you for sharing.

Steve.Adam's picture
Steve.Adam
Posts: 460
Joined: Oct 2016

The probability of recurrence should be very low, but does happen sometimes.

Mine was T1b grade 2 and I am assuming (with occasional anxiety) that it won't come back. So I am keeping my fingers crossed while actively seeking a healthier lifestyle.

But consider that we will be closely monitored in future. Any recurrence is likely to seen and dealt with early.

Best of luck to you.

Steve.

Getting_Ready
Posts: 8
Joined: Mar 2018

Thank you for the comment.  As i work through the message boards, I have come across several of yours and gained insight and benefit.  Hope all continues well for you.

AnnissaP's picture
AnnissaP
Posts: 632
Joined: Sep 2017

Good morning! I hope all goes well for you and that you find the answers you need. A partial nephrectomy is a great option because the tumor is taken care of and you get to keep the rest of your kidney (lucky you!). I unfortunately lost my left one. Kidney cancer is usually slow growing so try to stay positive and relax until July. It sounds like everything will be taken care of so all the best to you!

Getting_Ready
Posts: 8
Joined: Mar 2018

Thank you for your message of good thoughts.  Next step is to go out and find your viral video with your son....Laughing

Otrava
Posts: 9
Joined: Mar 2018

Hi there,

I was also just diagnosed with kidney cancer in the left one but my tumor is in the center of my kidney and near main blood vessels and tubes the oncologist's advice is to remove the entire kidney and I am going to do this though it is scarey, Thank you for sharing your life with me,

Getting_Ready
Posts: 8
Joined: Mar 2018

Otrava - looks like we will be going through the journey together.  This board is great and look forward following along with everyones journey and sharing mine.

Canadian Sandy's picture
Canadian Sandy
Posts: 606
Joined: Jul 2016

Welcome to the board. You will find a lot of goood people here.

Getting_Ready
Posts: 8
Joined: Mar 2018

Thank you and looking forward to getting to know many of you (at least digitially).

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