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Scared. Optimistic, but scared.

citizenklaw
Posts: 39
Joined: Mar 2019

So I was just told by the ER that they found Renal Cell Cancer in one of my kidneys. This, am afraid, is something I brought upon myself.

 

Long time drinker, to the point of blacking out frequently. Last year, after a bout of drinking, I pissed blood, but thought nothing of it and it never happened again. Flash forward to yesterday. Had a couple of beers, go home and start pissing blood. A lot. At one time I piissed large clots. Then the pain started on the left.

Go to the ER. Tests, CTs (two). Its RCC.

It's around 10cm, so its big. But it apparently is not outside of the kidney. I understood that the ER doctor told me that this would probably be removing the kidney, some follow up treatment and so on. Will have an appointment on Monday.

But this is hecking scary. 

I knew I had to change my lifestyle. I didn't. Here's the price I'm paying.

I vow to fight. I choose to fight. 

So if anyone else out there is going through something similar your words, and your advice, will come good at a dark time like this.

This is a new journey. Onwards.

CK.

icemantoo's picture
icemantoo
Posts: 3208
Joined: Jan 2010

CK,

Make sure the Urologist you are seeing Monday specializes in Kidney Cancer. At 10 cm it is large, although many have larger. Take copies of your scans to the appointment, not just the reports. May not be related to drinking or bad habits. Unless there is something more to your story they will probably want to take the full kidney and tumor out. You want this done sooner rather than later. I went thru the sane thing with a smaller tumor almost 17 years ago.

 

 

 

icemantoo

citizenklaw
Posts: 39
Joined: Mar 2019

Thanks for the tip, and yes. I will do this sooner than later. I'm going full bore on beating this thing out. 

Luckily, my symptoms have sort of gone away for now. But I have this parasite in me. It's going out.

citizenklaw
Posts: 39
Joined: Mar 2019

Curious. 17 years ago, if I may ask?

icemantoo's picture
icemantoo
Posts: 3208
Joined: Jan 2010

The picture is almost 7 years old.

 

 

 

icemantoo

citizenklaw
Posts: 39
Joined: Mar 2019

This made me smile and tear up. 

Let's give this thing a fight it will never forget.

Manufred's picture
Manufred
Posts: 239
Joined: May 2017

It is quite natural to look into your own behaviour for a cause of newly diagnosed cancer, but not necessarily useful.

There is no established link between alcohol and kidney cancer, and I cannot see how even heavy drinking would lead to your kidney probems.  I have always enjoyed a few beers or some wine, and no-one has told me to stop during my own journey through kidney cancer.  Not that I think it is a good idea to drink excessively.  

Your tumour is quite large and might be doing things to your kidney function, but I agree with Iceman - make sure they establish what caused the bleeding, and that they dont get blind-sided by the RCC.

RCC can be survived, but it will help if you are in reasonable shape physically.  If you are thinking of cutting back on the grog, now would not be a bad time.

Best of luck. Fred

 

citizenklaw
Posts: 39
Joined: Mar 2019

Yeah, this is a new journey for me (us). I'm leaving the booze behind, and it was about time I did regardless of the RCC. 

eug91's picture
eug91
Posts: 139
Joined: Jan 2019

Sorry you had to join us, but this is a great forum. The people here were invaluable to me when I was diagnosed. We've all been where you are now, so feel free to ask us any questions. We're with you!

Like you, there's a part of me that felt I brought it on myself, even though it probably was just bad luck. Regardless I tried to use my diagnosis as a fresh start to lose weight and live healthier - eug91 2.0. From your positive attitude, it sounds like you're going to do great, too. 

You've got this! 

Positive_Mental_Attitude's picture
Positive_Mental...
Posts: 454
Joined: Jul 2014

Don't blame yourself or your behavior.  You can't change it now anyway.  As someone else said, it is doubtful drinking caused kidney cancer. I don't drink, don't smoke, eat a relatively healthy diet and exercise.  Emergency room visit and CT scan revealed a small tumor on my right kidney in 2014.  I was 47 at the time. Tumor was surgically removed in an open surgery, and I have been cancer free since the surgery.

Being scared is a normal part of the process. I was scared beyond description.  I cried hard, and I am not a crier.  I am my worst critic, and I am pretty hard on myself for the crying part. Cool  I wish I had found this forum sooner in my process, as there are some really amazing and caring people here.

Be careful of what you read on the internet.  Everybody's situation is unique.  Once you find a team, trust your team.  My local urologist could have done my surgery.  But the look on his face when he viewed my scans did not give me a high degree of confidence that he was up to the task. Plus he told me that they would remove my entire right kidney.  I found a surgeon at MSKCC in NYC, and I was determined that he would do my surgery.  I had to fight my insurance company to the point of death, and I ultimately had my surgery at MSKCC.

 

Retcenturion's picture
Retcenturion
Posts: 240
Joined: Mar 2017

Welcome CK.. Not sure how much lifestyle affects RCC as others have mentioned. At 57 my 11 cm turd wasn't hard to miss. I have robotic full Neph. Not something I'd want to do again, but not nearly as bad as my head imagined. Your medical team will lay out the plan. As I've advised others. Prep for Post Op now. Go back to past Posts, a wealth of info. Research what is going to be done. Line up family and or friends for post OP. You will need help the first week. Your in the right place. Sending positive thoughts for you and your loved ones.

citizenklaw
Posts: 39
Joined: Mar 2019

Thanks all. I'm having this attitude that this is me 2.0 (shout out eug91). For some odd reason, I had a great last sleep last night. Still having the after effects of the bleeding ep, but on the up.

Test results came back of the CT contrast came back, and while I'm no doctor (and I don't play one on TV), it says there is no evidence of metastic disease. This has given me some hope...

ChristineCD's picture
ChristineCD
Posts: 11
Joined: Aug 2018

You are in the right place to seek support and answers. I am a fellow “large” tumor person- stage 3ta, clear cell. Just had my 6 month follow up scans, and praise God all clear. You have received some great advice! Make sure you go to a renal cancer specialist- it does make a big difference for surgery and follow up. Wonderful that your staging scans were clear! And don’t blame yourself because nothing you did probably caused this. I am an active non-drinker, non-smoker, 49 years old at diagnosis, but with a 14cm tumor, it was probably growing for a while. Just try to get in the best shape you can get to prepare for surgery. It will help. Walk walk walk! Best wishes to you! 

APny's picture
APny
Posts: 1933
Joined: Mar 2014

I'm glad you found us for support. I'm certainly not advocating an unhealthy life-style but if that's what gives us cancer then how come children get it too. And nuns, and clean living, non-drinking, non-smoking athletes. I had NONE of the risk factors associated with kidney cancer yet here I am.  So please don't beat yourself up. Focus on getting rid of it and getting well. Then you can make healthier choices for yourself. All the best to you!

citizenklaw
Posts: 39
Joined: Mar 2019

Lucky. (Blessed?)

Urologist appointment today. 

Another update: last two days have been mostly OK. I feel energetic, have eaten reasonably well (my girls want me to turn vegan). Still urinate blood, primarily in the morning and also after drinking coffee (decaf). Whis is interesting. Otherwise, I'm staying hydrated and active. 

There's a part of me that's still concerned. There's another part of me, however, that is fascinated by the medical technology of today and its possibilities. Does that make me optimistic about my own prognosis? No, but it's certainly something to look forward to. I guess.

CRashster's picture
CRashster
Posts: 229
Joined: Mar 2017

Scared is pretty normal. Drinking didn't cause this, but it's time to stop. Welcome to the club.

citizenklaw
Posts: 39
Joined: Mar 2019

While you're right that it's not the sole cause, I do believe that I had signs. I've been thinking this morning that it is useless to dwell in decisions that I may have made that brought me here. Maybe I would have had it regardless, or in another place. Fact is, I'm here, now, and I need to deal with the immediate.

Talking here with some of the folks, I've felt welcomed and at peace. 

citizenklaw
Posts: 39
Joined: Mar 2019

Surgery scheduled for this Wednesday. The urologist did not want me to wait. I suppose that's for the best.

Still not looking forward to the anesthesia thing, tho. 

en8236
Posts: 28
Joined: Dec 2017

You will not remember anything. Just think about your dear ones who will not be sleeping through the process and will be thinking about you. Does a sleep sound less stressful now? Best of luck.

jroby55
Posts: 36
Joined: Feb 2019

I think what you are doing is pretty normal in our situation. One thing that helped me tremendously was God, Family and Friends. Those 3 things gave me a major will to fight and an unwavering means of hope and optimism. I still had points (and still do) where I get very scared, but just keep your priorities straight and keep fighting. You've got this... don't beat yourself up, just figure out what you're going to do better from here on out.

trp61's picture
trp61
Posts: 3
Joined: Mar 2019

I am scheduled for a partial nephrecotomy on 4/1/19 due to a 3.2 cm tumor in the kidney. I'm 61 years old in relatively good health except for being 280 lbs. with considerable belly fat. I have the best doctor in the area set to perform the surgery using an open incision. He will not use laparoscopy because he intends to remove only a portion of the kidney. But, he stated he may have to take the entire kidney once he begins. My dilemma is that the clock is ticking and I am torn with 3 options...

A.) Do I continue with the scheduled open surgery, trusting that the great doctor will do what he can to ease my recovery, with the chance I lose only a part of my kidney? 

B.) Do I pursue someone who believes can perform the surgery laparoscopically, knowing I'll lose my entire kidney?

C.) Or do I postpone the scheduled open surgery (risking spreading) to seek an expert willing to perfom a partial nephrectomy via a minimally invasive method? (I know of no one.)

D.) Or is there yet a better option?

PLEASE LET ME KNOW YOUR THOUGHTS ASAP. THANK YOU ALL!!

citizenklaw
Posts: 39
Joined: Mar 2019

Mine was considerably bigger than yours. TBH, I'm no longer the slim strapping lad I used to be back in college. I am overweight, and I have a good 'Dad' beer pouch on my belly. That said, the surgery went without issue and they took everything out. 

I'm recent on this, but my advice? Go with what the doctor recommends. I'm about a week out, still with some pain around the incision areas, but otherwise functional. I don't know what my recovery time would have been with the open alternative.

a_oaklee
Posts: 436
Joined: Nov 2013

The first surgeon we saw was too excited to take out my husbands entire kidney.  When I asked how many times has he done this surgery, he got rude.  (We live in a rural community).  I've always known it's better to do minimal removal of kidney tissue, with the least amount of trauma.  Our PCP scheduled an appt at a major medical center in the city with an experienced surgeon with robotics.  It was the right decision for us to get a second opinion and to at least try to have a laparoscopic removal.  I think you do have time to get a quick referral.  We were seen within 1 week.  My husbands tumor was 4.5 cm..

I dont think the amount of weight that you are describing will affect your surgery.  Good question for both doctors.  Let them reassure you.  I would not delay surgery while you try to lose weight.  That's a bad idea.

Dont let anyone be nonchalant about the fact that you can easily function with one kidney.  Like it's no big deal.  It is true you can function with one kidney, but the sparing of part of your affected kidney puts you in a better situation.

Let us know what you decide.  Best wishes.

Manufred's picture
Manufred
Posts: 239
Joined: May 2017

I would not be agonising over this.  If the good doctor prefers an open cut procedure, go with him. No big deal and allows him more options.  You will recover from the Op, and you end up with a nice big scar to wear as a badge of honour.

Best Wishes, fred

trp61's picture
trp61
Posts: 3
Joined: Mar 2019

Ha! Thanks, Fred!

HLee
Posts: 13
Joined: May 2018

I pray that things are moving alone fine for you.  Don't blame yourself but making healthy decisions from here is a great idea.  i had a large tumor on the outside of my left kidney.  The ct scan said my tumor was 11cm.  The tumor actually measured 20cm when it was out.  Surgery went well. I have a huge incession because the tumor was in my vena cava.  Recovery went well.  That has been a year and a half ago.  You got this.

citizenklaw
Posts: 39
Joined: Mar 2019

I am humbled. Mine was not anywhere outside of the kidney and here I am moping!!!

I'm drawing good vibes from you.

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