Officially a member now

Jojo61 said:

Hi Kim,Welcome to the club

Hi Kim,

Welcome to the club that nobody wants to join. I know that this news is hard to hear, but you are going to be fine. The surgery is no picnic, but surprisingly it isn't that bad! The waiting is the worst!! I had a 13 cm tumor on my kidney when it was removed, and it went very well.

Be prepared....the first week you won't be able to do much. I hardly used pain killers. Jan used a lumbar wrap and filled it with dry ice, which I think is brilliant, and would be my first choice of pain killer had I known about that back then. Try and prep as much at home before the surgery (make some meals ahead of time, get caught up on laundry, clean the house, pay the bills, etc.) so that you can just concentrate on feeling better!!

Hang in there, we are here for you!

Hugs

Jojo

that was easy. Your beanie will be in the mail.

daisybud said:

So I got the report via

So I got the report via patient portal  anyone know what this means....  The following is from the report I just recieved via email portal   anyone have this type of procedure? 

 

I did review that based on the location of the lesion, the mass would certainly be more difficult to resect as it is near the hilum and is endophytic. I explained that lesions of this nature are managed with enucleation rather than resection with wide margins.

 

 

Sounds like your tumor is near the veins/arteries of the kidney.  For this reason, it sounds like they will not take a lot of tissue surrounding the tumor, and they will be more precise and remove the tumor with minimal removal of kidney tissue.  That's my take, but I am not a doctor or an expert.  By the way, it sounds like my tumor was similar to yours.  Mine was a 2.9 cm perhilar tumor on the right kidney. My doctor at MSKCC did a partial open nephrectomy, and it was a piece of cake.

By the way, is your doctor Dr. Uzzo?

Daisybud,

We all were scared sh--less hearing that we had Kidney Cancer and they were going to yank our kidney out right out of the gate. I wish I could say that it does not hurt, but I would be laughed off this board. There is no way to sugar coat a neph.

That being said the chances for a full and complete recovery for a 2.5 cm little bugar from the surgery alone should be much better than 90%. One thing is certain and that is that the neph. is a hell of a lot better than the alternative. You will of course take it easy for a few weeks and months afterthe neph., but you already knew that.

Heres to giving you some good cheer after  the initiation. May the force be with you.

Icemantoo

Okay so here we go...  I want to just review comments you made in some of your posts.  My responses will in bold and then I will give you my final thoughts...

When I asked what the chance was that it was cancer he said 75% or more.  Its still small 2.5 cm.- Look at this this way 25% it's not cancer and even if it is 2.5 is small.  You got lucky finding it now and not 5 or 10 years from now.

I asked him if he had done a lot of these surgeries.  He has done over 450 Davinci surgeries - BAM!!!  That's what I am talking about!  This is great news for you.  

90% chance of complete cure without needing any further treatment.  Def scans tho.  I asked about ct vs mri and he told me mri follow-ups are fine - 90% sounds rights.  If they do a partial there's a chance you could have reoccurrence in that kidney and if you do you will cross that bridge when and if you come to it.  Depending on what type of lesion this is that will determine how frequently you will need follow up scans.  If this is something like an occtocytoma you will not need any further follow up other than making sure you are healing up okay.

Then it hit, I am scared to death of the surgery and recuperating period - I've had two surgeries, gallbladder and partial nephrectomy, in my life and they both scared the sh%t out of me, but they both went extremely well.  PLUS you've got an extremely experienced doctor you should be just fine.  Recovery wasn't too bad, but it wasn't a walk in the park either.  Pain wasn't too bad.  I needed pain meds around the clock for the first 5 days then I only used them at night.  My biggest complaint was that freaking CO2 they use to inflate the abdominal cavity.  That bothered me more than the 5 tiny incisions I had.  I also had to sleep on my back for about 3 weeks and I didn’t really like that too much.    It took me about 3 weeks to get back to normal and not lifting anything more than 10 pounds was a pain in the butt, but really other than that it wasn't bad at all.  I watched old episodes of Big Bang Theory, WKRP, and played a lot of Xbox. 

"I did review that based on the location of the lesion, the mass would certainly be more difficult to resect as it is near the hilum and is endophytic. I explained that lesions of this nature are managed with enucleation rather than resection with wide margins." - Basically your mass in deep within the kidney so it sounds like he is going to use a technique that is going to take out more healthy renal tissue, in order to get the mass, rather than trying to shuck it out like a small mass that is closer to the surface of the kidney.  

I believe that there is some higher power that is looking out for you.  Your mass was found while it was small and you found a great doctor.  You will do well and have a long and happy life.  Try and not worry about what ifs.  I've worked in healthcare for over 20 years, mainly emergence medicine, and I can tell you that life is short and there are no promises for another tomorrow.  Time spent worrying is time spent wasted.

Jason

daisybud said:

Panda,
Hope I have the same

Panda,

Hope I have the same recovery you had! It would wonderful. 

KIM

Exactly as Positive_Mental said. Enucliation is the removal of only tumor tissue without resectioning the kidney. As for partial turning into radical, we're all told that and have to sign off on it. They attempt a partial (whether open or robotic) but depending on how it's going it could turn into radical neph, just as robotic may have to become open. All in all, your tumor is very small and chances are excellent that surgery is the end of it. Wishing you the best!

Very sorry to hear you'll need to have it out. It is good they caught it small.

I'm going to tell you what I wish somebody had told me because I was caught really off guard and was somewhat angry about things. They will not know the staging until they do the pathology report. There are two main points related to staging. One is size. The second is what the tumor has had access to with respect to getting out of the kidney. Finally there is a "grade". All of this relates to probability of the cancer spreading. Small (less than 7 cm), fully contained, Grade 1 has the best cure rate from surgery alone.

First of all, you don't even know it's RCC yet. You'll find out from the pathology report. You'll find out all the other stuff from the pathology report. Anything with regards to Staging/Grade at this point is a guess. They can't do this from imaging. They need to slice the tumor up and look at it under the microscope.

Nobody really explained this to me. I went into my surgery hoping it wouldn't even be RCC, but if it was, I thought I was going to be Stage 1 which has a pretty good prognosis of being cured by the surgery alone. I thought when they told me it was Stage 1 before the surgery, that's what it was going to be.

However, when they got my tumor under the microscope, they found it had invaded some tiny blood vessels in the kidney. This alone promoted me to Stage 3. My tumor grade was 3. The grading is 1-4. 1 is least aggressive, 4 is most aggressive. So, yeah, I was angry because I thought what they told me was for sure before the surgery.

If you find out it is RCC, you'll also find out the type of RCC. There's clear cell (most common) and then less common ones.

Stage 1 has about a 90-95% cure rate from surgery. Stage 3, like me, it's more like 60-70% cure rate (30-40% chance of mets at some point).

In any case, you don't know what it is and you won't know until it's out and you have the pathology report in your hand. If anybody says Stage 1 at this point, they are guessing based only on the size and what they can see from imaging. Not completely accurate.

I wish you well and hope they can get it with good margins using a partial nephrectomy. Also, hope the pathology is good and it's something benign (which it could still be).

No reason to get worked up. Living with this stuff means learning to live in the unknown. It's our challenge. You don't know and that's ok. It takes some getting used to not knowing. I'm still struggling with this 3 years later. Sending you good energy for a terrific outcome. Please keep us updated!

Best wishes,

Todd