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I am really struggling today

Tobi
Posts: 21
Joined: Jul 2021

On July 21st a ct looking for problems in my gallbladder found a 4cm mass in my right kidney. A week later I had an MRI and a week after that I was sitting in the Urologists office planning surgery. I know the CT and MRI showed no evidence of metastasis and my kidney function looked good. Surgery is scheduled for Aug 30th...I am having the whole kidney removed. I think today it just hit me hard, how overwhelming it all is and since we don't have an actual pathology report yet it's scary because I don't know for sure what I am dealing with yet. Just scared I guess and looking for piece of mind.

Dnipro's picture
Dnipro
Posts: 7
Joined: Jun 2021

My situation is very similar to yours except my tumor is 3cm. The surgery will happen next month I am also likely to lose the whole kidney (tumor is in a difficult place).

I also won't know if it is renal cell carcinoma or renal oncocytoma until after the surgery. However, I try to be optimistic and think that, whatever it is, the nasty mass will be out of my body and I will have some closure.

I hope that your surgery goes smoothly and that you have a good recovery!

Tobi
Posts: 21
Joined: Jul 2021

I am hoping for an awesome outcome to surgery for you.

bull2862
Posts: 1
Joined: Mar 2021

I had an Open Radical Nephrectomy on 2/12/2021. My tumor was 6cm with Renal vein invasion. I had a Urologist and the Director of Transplant Surgery perform the surgery due to complex issues. Everything went fine, except my remaining kidney is not doing so well. I learned long ago not to worry about the unknown. I trusted my Surgeons and there was no evidence of metastasis.  The tumor turned out to be clear cell carcinoma. Now, I will have a CT on a regular basis. I have tried to keep a positive attitude...there is nothing I can do about it now. I am just trying to live my life the best I can. Additionally, you will not receive a Pathology report until after the surgery. You can request a copy of your MRI Report from Radiology. I am very familiar with everything, as I am a retired Cytotechnologist. I wish you well with a speedy recovery!

Tobi
Posts: 21
Joined: Jul 2021

Mines 4cm and the surgeon just said he thought it wasn't going to be all that advanced. He didn't see any issues on my scans. I am just worried because I received the authorization from the ins today and it said radical nephrectomy and in parenthesis including removal and it listed some things that weren't surprising but also said adrenalectomy which I didn't know was part of it. I don't know maybe it's normal for that to be removed also, I just got scared there was some reason I wasn't aware of that it needed to be removed. 

tgpath1's picture
tgpath1
Posts: 51
Joined: Apr 2021

I had a radical nephrectomy of my left kidney and the surgeon had to take a small piece of my adrenal gland.  He explained that it has to do with the position of the kindey, they could not take the kidney without taking a piece of the adrenal gland (which has had no effect on me).  Perhaps they approve the adrenalectomy as a precaution for those situations?

Tobi
Posts: 21
Joined: Jul 2021

It is possble that is why...I also read online that it isn't an uncomment practice to remove it when doing a radical nephrectomy for suspected cancer ...some drs take it too for a variety of reasons. 

MollyMarie64
Posts: 8
Joined: Dec 2020

I am so sorry that you're scared.  It is extremely overwhelming.  I think (hope) that you will feel better once you get 
the pathology report so you know what you are dealing with.  I've read tons of stories on here like yours, and most 
everyone has had a positive outcome.  Please keep us updated.

Tobi
Posts: 21
Joined: Jul 2021

Thank you for the kind words. 

AliceB1950's picture
AliceB1950
Posts: 125
Joined: Jun 2019

I had a laparoscopic nephrectomy almost three years ago. The cancer was 7cm × 6cm, so about the size of an egg. Just to give you some peace of mind, that's still considered smallish for a kidney cancer! I had the surgery one day and went home the next. Sure, it hurt for the first few days, but as I did more and more walking, that eased up considerably. Walking and staying well-hydrated are the most important things for a good recovery, the walking to heal the muscles that were cut, and for circulation, and the hydration to get your remaining kidney to do the work of two. It will be normal for your kidney function numbers to be all over the place for months, or even a year or so, after. I was pretty upset when I was told my numbers put me at stage 3 kidney disease, but the nephrologist I went to said those numbers were fine for a single kidney, and for those of us with just one, the number charts don't apply except to show consistency. I would ask about the need for an adrenalectomy. That might be on the pre-authorization just in case they have to remove it, but I'd want to know for sure. Mine was left in even with a complete kidney removal, with the tumor at the top.

Bay Area Guy's picture
Bay Area Guy
Posts: 518
Joined: Jun 2016

My lesion was pretty small, less than 2cm, and I had a robotic partial.  That was five years ago.  But I also had almost 2-1/2 years of active surveillance before that because it was so small.  I had scans every six months before an ultrasound determined it had grown.  Then it was still another two months before the surgery.  Your journey, being so fast from discovery to surgery, is a lot different.  It's good in some ways.  You don't have as much time to obsess over what's going on.  But on the other hand, I can understand how overwhelming it is.

Some suggestions for you.  Between now and the surgery, focus on eating well.  I was at a very healthy weight but I added a few more pounds prior to the surgery because I knew from previous abdominal surgeries that being in the hospital having surgery will cause you to lose weight.  Get used to taking daily walks if you don't already.  One of the best ways to help the healing process is to walk.  In fact, if your hospital is like mine, they'll get you up and moving the same day after you're operation and they'll keep encouraging you to walk.  They'll give you what's called an incentive spyrometer To do breathing exercises.  Use it at least every couple of hours.  It will help your lungs after the anesthesia.  get a good pillow or cushion to hold against the incision site.  It helps getting up and down and also if you have to cough or sneeze.

One final thought.  Don't Google anything about your condition.  The internet can be a great tool for some things.  Health matters like this is not one of those things.  As I and many others here can attest, you can find a lot of information that's contradictory, that's old or is simply wrong because the site is trying to sell you something.  It can drive you crazy if you look at it.

You'll do great!  Looking forward to hearing about you're experience after the 30th and looking forward to years of posts that say you have no evidence of disease (NED) when you get your follow-up scans.

Tobi
Posts: 21
Joined: Jul 2021

Thank you Bay Area Guy.....google is my worst enemy right now and most likely causing 99% of my anxiety. I was ok after seeing my surgeon and just a little scared, but confident I was going to be ok. For whatever reason I just got a case of the what ifs and started worrying about things that are not likely to happen. I am my own worst enemy right now.

Allochka's picture
Allochka
Posts: 969
Joined: Nov 2014

Hello,

4 cm tumor is really a small one in kidney cancer world, and it shouldn't be advanced. Please try to calm down a bit (easier said than done, of course...) 

Can you contact your surgeon and ask about this adrenalectomy thing, just to get some clarity and peace of mind?

Good luck with your surgery!

 

donna_lee's picture
donna_lee
Posts: 1018
Joined: Feb 2009

So sorry to welcome you to this board.  Your introduction sounded like what I went through over 15 years ago.  And I survived.  It would be easier if you clicked on my user name to read the story as it saves me having to type it again.  I probably wouldn't change anything I wrote at the time, but would add that at times it has been an emotional struggle and sometimes physically stressful.

Yes, I did see a counselor and had been on anti-depressants prior to the surgery.  I'm at the age where things like high blood pressure and kidney function are a concern, so keeping regular tabs on my overall health are a pririty.  In a month, I see my Onc. PA and will probably have the CT check to.  Just a fact of life.

A total neph is not fun, and recovery takes a little time.  Make up you mind that you'll get through and be another survivor.

Hugs and HI 5's

donna_lee

Tobi
Posts: 21
Joined: Jul 2021

Thanks everyone.....I am feeling a little better, still stressed but not as bad. I am hoping after surgery and pathology it will get better. I have been able to accept this is most likely cancer, and I am sure it was caught early enough to give me a great chance of getting through this and having many years to get the rest of my kids to college and possibly meet any future grand kids ( I have 4 kids ages 21, 18, 16, and 13). I get overwhelmed with how much has happened in the course of a month, but I am thankful my GP moved swiftly to put everything in place and sent me to an awesome Urologist who has a fantastic rep with everyone who I have talked to.....so I'm confident I am in great hands. He told me that day in his office to put my life in his hands and he would take care of me....so that's  what I am going to do. I hope to get on the other side of this and have many many years here with everyone adding my support to people who need it. This forum has benefitted me greatly when it has come to quieting the turmoil and I want to thank everyone here for just being helpful and calm and I haven't felt very calm.

tgpath1's picture
tgpath1
Posts: 51
Joined: Apr 2021

If it makes you feel better, my tumor was 7.9 cm and stage 3....my urologist told me I'd live to see my grandchildren (and my kids are 10 & 12).  Treatment and detection have come a long way!    Hearing that you have cancer is devastating but it's not a death sentence...it just takes a while to wrap your head around it!   Good luck and keep us posted!!

Pattymayo
Posts: 12
Joined: Apr 2021

That is wonderful that your urologist told you that...that gives me hope for my son. His was stage 3, 2. Scans are questionable and scare me. Glad you are doing ok.

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