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I'm petrified

Jesuit1234
Posts: 6
Joined: Jan 2021

I am petrified to go and get my left kidney removed.   I have seen 3 surgeons so far.

Surgeon #1 --- Insisted that the kidney must be removed.  "No partial".  Not much explanation.

Surgeon #2 --- Said that she could do a partial with "No problem".  She decided not to reveal to me how many years or procedures that she has done and then declined the surgery.

Surgeon #3 --- Fully explained that even if he wanted to do a partial there would only be remnants left of my kidney.  He looked me straight in the eye and was very intelligent.  I decided on the spot that he was the correct surgeon for the job.  I was originally diagnosed by chance with a solid enhancing mass in the lower left pole of hte left kidney measuring 5.9 cm x 6.1 cm x 7.1 cm by a CT scan of the abdomen.  A subsequent MRI showed the same thing showing a smaller measurement of apx 1 cm for the mass.

I also understand that it has not spread to anywhere else in my body and is encapsulated in the kidney.

Additionally I went for testing and was informed that my left kidney is functioning at 47% and my right kidney is functioning at 52%.  After discussing this with a kidney Doctor and the Urologist surgeon both of them concluded that I will not need dialysis.

I understand that there is a possibility for this to be benign.

Is there any other technology that exists to determine if this is benign or cancerous ?  I understand that the surgeons do not want to do a biopsy because of the risk of "seeding".

Is there any other technology or treatment available to shrink the tumor without having any surgery ?

Any comments or professional opinions would be greatly appreciated.  

My surgery is scheduled for February 04, 2021.

Thank you,

 

Andrew

Bay Area Guy's picture
Bay Area Guy
Posts: 498
Joined: Jun 2016

Hi Jesuit1234.  I responded to your post that disappeared.  I'll summarize here.

Surgery is the gold standard.  I had a minimally invasive partial almost 5 years ago for a lesion that was much smaller (1.7cm when it came out).  No mention was made of a biopsy.  However, my sister, a nurse pr@ctitioner, warned against a biopsy becaus3 of the seeding issue.  It doesn't happen often, but it does happen.

The second treatment option is ablation, either cryo (freezing) or radio frequency (heating).  It's an outpatient procedure.  Two issues for your situation.  One is that the size of your tumor likely eliminates ablation as a treatment.  I believe the maximum size is 4cm, but that's what I recall from five years ago.  The second issue is that the ablation process kills the cells.  So if they used ablation, you would still pretty much face 5he same kidney function issue as with removal.

My reading (again, five years ago) was that radiation and chemo do not show good eff3ctiveness against kidney cancer.  They're only used as a therapy if the cancer has spread to other locations which, thankfully isn't the case with you.

There are also drug related therapies.  Others on this forum have much more knowledge of that treatment option.  My knowledge ends at the fact that the treatments exist, but that's it.

In terms of selecting a surgeon, obviously technical skill is important, but confidence and Comfort in the surgeon is equally important and it sounds like you have found the right person for you.

Hopes and prayers that you have a routine, boring surgery and that your recovery goes well.  All of us here will be rooting for you.

AliceB1950's picture
AliceB1950
Posts: 110
Joined: Jun 2019

Okay, I've copied my second reply to you on the other thread. Stay put here, okay?

You have a big piece of crap on one kidney, which is a major reason why your GFR is low. My numbers since surgery (anywhere from 30s through 50s) on my remaining kidney put me at stage 3 kidney disease, which kind of freaked me out until I saw a nephrologist, who explained that my numbers are just fine for running on one kidney and what they look for is consistency in the numbers. Your best bet is to have one healthy kidney rather than a cancerous one dragging them both down. Every one of us here has had either a total or partial nephrectomy (there may be a tiny percentage who went for ablation, but it doesn't sound like you're a good candidate for that). Although Bay Area Guy's advice is probably good, I was a flabby 68-year-old when I had my surgery, and like I told you before, I went home the next morning. I walked around the house that week, and the next week I was hiking (okay, a little slowly) in the woods and following it up by going out to dinner (pre-Covid days). The best advice I got for a different surgery that year: You don't have to be brave, you just have to show up.

icemantoo's picture
icemantoo
Posts: 3328
Joined: Jan 2010

You are  like me 18 and 1/2 years ago waiting for my Neph on 8.1.2002.

 

 

icemantoo

Lis I
Posts: 2
Joined: Mar 2021

i have been very anxious these past days but your comment saying that you had surgery 18 + years ago, make me feel better tonight. did you have partial nephrectomy? was there any treatment after? have you experience back pain and you thought it was your kidney? Thank you!

donna_lee's picture
donna_lee
Posts: 1001
Joined: Feb 2009

If you click on my user name, you can read my bio.  Of course, I always have to go bigger and better in this race.  Hah.  Reinforcing what others, including your doctor, get that sucker out of there.  By the time they excise with a partial on a tumor that large, you would be better off to have the entire kidney removed.  And I wouldn't be surprised if they also remove the set of nodes behind the kidney, as that is one of the first places the mets seem to go.  I had it all-plus in the liver, and later in separate nodes.

Your stay in the hospital and recovery time would be about the same.  And once you are free to go back to normal, you shouldn't have any problems.

As to eGFR, tha goes down as the kidneys (our bodies) age.  My first test after surgery in 2006, my eGFR was 48 with one kidney.  It haa slowly gone down, to the point I am now seeing a nephrologist as it ws hovering just above 30 (the lower # for Stage 3 Kidney disease).  One time it dipped to 29.  I am now seeing a nephrologist, drinking lots more water, and brought the # up to 31. At 15-30, they watch you pretty closesly.  

I've lost a number of friends on this board due to mets of kidney cancer to inoperable/and mets to brains, bones, and other organs.  Don't be one of them. 

Iceman and I have been here for a while.  Stay here with us.

Hugs,

donna_lee

todd121's picture
todd121
Posts: 1449
Joined: Dec 2012

I had a similar size tumor but central in the kidney 8 years ago. I doubt your tumor of that size is benign. They told me 10% chance of that also and I went in thinking that. Realize they can't tell you much about what it is until they get it out and put it under a microscope. You won't get a diagnosis nor a stage/grade until pathology examines it.

I'm a little not clear about the seeding thing with biopsies. They did say that years ago, but I heard they've done studies since and proven it's very unlikely and they are doing more biopsies now. The bad thing with biopsies it's only a small sample of the tumor, and tumors are not homogenous in makeup. A negative biopsy on a tumor that big doesn't give you much information.

I'd take it out. I'd get the whole kidney out with a tumor that large probably. I think partials are difficult surgeries with small tumors. They are probably really hard with large tumors.

Best to you,

Todd

Jesuit1234
Posts: 6
Joined: Jan 2021

Hi Todd,

How long did it take you to recover ?

How were you after 1 week ?  2 weeks ?  1 months, 3 months ?

And thank you for replying to my post.

 

Andrew

 

 

 

CancerFreeSunny
Posts: 25
Joined: Sep 2018

In response to how long to recover? I had a kidney removed in 2005. I had a completely normal life aftewards and it took me 3 months to recover. It was major surgery and I took an FMLA, not knowing how long it would take to recover. Now my other kidney (nothing to do with the surgery in '05) went into stage 5 Renal Failure in 2019 (due to Crestor-statin drug) and now I'm on dialysis. I think it depends on the type of surgery, your age, and your overall health at the time, that determines your recovery time. :) 

Deanie0916
Posts: 390
Joined: Nov 2016

I also replied to your other reply. I agree with the others. There are so many of us who are doing fine after having a kidney removed. Please keep us updated Andrew. Prayers and good thoughts coming your way!

a_oaklee
Posts: 564
Joined: Nov 2013

I think the more you read about all the people who have had surgery and had a speedy recovery, the better you will feel.  When I get overwhelmed by something of this nature, I usually tell myself "if all these people can do it, then I can too". 

It's my opinion that the surgical approach is best.

donna_lee's picture
donna_lee
Posts: 1001
Joined: Feb 2009

As in how far in they have to go, what they need to explore, your own health prior to surgery, length of time in hospital.  My surgery was much more extensive than most due to the mets to the liver and other problems they took care of.  I had started to feel human at 3 wks., but with set back with pancretitis. On meds and able to eat again, by 4 weeks I was going to my office 1-2 hrs a day, and by 6 weeks I felt fine and was going to the pool to exercise.

I followed the rules Don't try to Overdue, If it hurts-Back off, and Pace Yourself.  Between increasing my work hours, and doing work in my neglected yard (slow and steady for several hours a day) my recovery went well.

Remember, the surgeons have to cut through and stetch open several layers of tissue and muscle to even reach the kidney.  After removal, all those layers have to be sutured back in place.  You will be sore, those muscles will "cry" when they are overstretched or over exerted.  I learned through sports and athletics that for every one day you don't train, it takes another 3 days to recover to the place you were before you stopped training.

Now, take on that devil and get on with living.

Hugs,

donna_lee 

duquguy's picture
duquguy
Posts: 14
Joined: Nov 2020

Hang in there, @Jesuit1234.

Easy for me to say, right? I was in a very similar position with a similar prognosis on my 40th birthday in September. 7cm. Encapsulated. Declined by the first nephrologist... the whole bit.  I found a surgeon who was ready and willing and my nephrectomy was on Oct 12, 2020. I made it through despite the surgeon finding that my cancer had actually spead outside of the kidney -- and my lone remaining kidney is now showing at 56% effectiveness.

It is super scary - no doubt about it. I'm not going to tell you it will be okay. I'm not going to tell you to stay positive. [I'm guessing you may already be tired of those cliches] It is scary as hell and no words were able to change that for me. Just know that you are not alone. Maybe you find comfort in that. So many of us have experienced what you are going through and what you are about to go through. Here are my two bits of advice:

1. Ask your doctors and nurses lots of questions. They are going to make lots of money off of you/insurance so they owe you answers. Don't be scared to ask anything and everything.

2. Come here for information when you feel overwhelmed. Come here for comfort when you feel scared. Come here for strength when you feel weak.

Feel welcome to message me if you feel alone and need someone who understands.

Hang in there.

Jesuit1234
Posts: 6
Joined: Jan 2021

Hi,

What did the surgeon say after he found out that the "mass" was outside the kidney ? 

Did they do any tests on you to see if it went anywhere else in your body ?

And I agree, there's nothing that is going to calm people like you and I about this huge change in life.

AliceB1950's picture
AliceB1950
Posts: 110
Joined: Jun 2019

Outside the kidney is GOOD. Invasive is worse. A CT scan at some point before surgery is standard, to see if there's any spread, but that's unlikely with a small one unless it's invasive and gotten into the blood supply and spread that way. That's another reason to get it out.

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