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daisybud's picture
daisybud
Posts: 301
Joined: Jan 2016

Hi All,

I just got back from urologist appt and was informed that the mass will come out.  When I asked what the chance was that it was cancer he said 75% or more.  Its still small 2.5 cm.  So, out it comes. I want it gone!!  I did not want to go with the wait and see.  I couldn't live with wondering all the time.

Really liked the dr.  He took a lot of time with me, answered all questions and I went with tons.  He also answered my daughter when she asked questions. We were both impressed with him.    I asked him if he had done a lot of these surgeries.  He has done over 450 Davinci surgeries. 

Also said that it was in a difficult spot on the upper right pole deep in the kidney and close to the veins. It never showed up on the ultrasound and now he wants another one to see if they can find it bc from what I understand they use ultrasound during surgery to see where to do the "scooping out" So even thought it says a partial he informed me that it might end up being a radical depending on the difficulty.  It will be robotic unless something changes during surgery. 

Tell me if this part sounds right? 90% chance of complete cure without needing any further treatment.  Def scans tho.  I asked about ct vs mri and he told me mri followups are fine.  I just dont ever want ultrasound bc I had two and neither found the tumor.

After signing all kinds of scary pre surgery stuff and hearing about everything that can go wrong, now I wait....  I will get a call in the next couple days to let me know when my surgery date will be.   I have to say I held it together till I got to the car.  Then it hit, I am scared to death of the surgery and recuperating period.  Im even afraid I wont wake up after.  Sounds crazy I know... I am just so freakin scared..

KIM

 

icemantoo's picture
icemantoo
Posts: 2623
Joined: Jan 2010

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

Jojo61's picture
Jojo61
Posts: 1276
Joined: Oct 2013

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

foxhd's picture
foxhd
Posts: 3039
Joined: Oct 2011

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

daisybud's picture
daisybud
Posts: 301
Joined: Jan 2016

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.

 

 

daisybud's picture
daisybud
Posts: 301
Joined: Jan 2016

Thanks everyone.  Scared but so very glad you are all here to make us newbies feel a little bit better.  I have been reading all the threads I think I am up to page 51.  It truly makes me feel better to read them and I see that Fox and Iceman have been on here forever....

KIm

Footstomper's picture
Footstomper
Posts: 1238
Joined: Dec 2014

Not to be scared, but it sounds like you've got a littl'un. Remove, rest, return to previous lifestyle with greater appreciation for the quality of said lifestyle.

Positive_Mental_Attitude's picture
Positive_Mental...
Posts: 379
Joined: Jul 2014

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's picture
daisybud
Posts: 301
Joined: Jan 2016

You are right Footstomper, I am going to be mad and fight!!  Great plan of action. 

 

Positive,

Thanks for the piece of cake..  No I go to Dr. Kalra.  Really liked him.  He said I wouldn't have to see a onocologist but if necessary he would send to Fox chase. He would do the followups and send me if something shows up along the way.

Thanks guys,

Kim

hardo718's picture
hardo718
Posts: 747
Joined: Jan 2016

Surgery sucks, recovery is a beast and yet it's like a breath of fresh air too.  I also used a lumbar support, although I didn't know about the dry ice thing that Jan refers to.  The support definitely helped.  I didn't use much in the way of pain meds, but personally I don't care for how they make me feel.  I was a little uncomfortable but not in major pain by any means. On the other hand, I never felt so weak in all my life!  I guess it was my body's way of keeping me from doing my usual running around so I could heal. 

Here for you Kim, and I'll be keeping you in my prayers.

Donna~

medic1971's picture
medic1971
Posts: 171
Joined: Sep 2015

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's picture
daisybud
Posts: 301
Joined: Jan 2016

Jason,

I have read your post a few times now.  You have all made me feel better if thats at all possible at this point. 

I did ask him twice about reoccurrence in a partial bc I have seen that has happened and he told me both times that it not a risk to do a partial at all.  Still not sure about that bc like I said I saw that as a possibility.  I will be asking that again. 

Funny thing! I was so ready for the appt with all my records, cds, labs and questions bc I have been reading everyones threads, that when I left he asked me what I do for a living.  He thought I was in researsch.  Told him nope, I work with learning support and autistic children. 

Its good to know what to expect.  It really helps to here from you all. 

Still nervous about the location but have to leave it to the doc. 

Kim

 

Pandabear1011's picture
Pandabear1011
Posts: 110
Joined: Jun 2014

I was really scared too! I had a complete nephrectomy and it wasn't as bad as I thought it was going to be. I had a 6 cm Grade 2 tumor and my MD Anderson doc told me that I had a 95% chance of it not coming back. I was in the hospital for 2 days. Came home on a Thursday and went shopping on the following Monday! ...:)

daisybud's picture
daisybud
Posts: 301
Joined: Jan 2016

Panda,

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

KIM

APny's picture
APny
Posts: 1476
Joined: Mar 2014

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!

lcsvb's picture
lcsvb
Posts: 40
Joined: Jan 2016

I had my lesion, similar size and location to yours, removed robotically in a Partial nephrectomy at The Moffitt Cancer Center in Tampa last week. Small, but it sat right on top of my Right Renal Vein.  I had several Drs look at my CT scan and 2 of 5 thought it could be partial and robotic, but the other 3 were leaning to open and probable radical. I went with the exerienced robotic surgeon and he did it successfully!  Recovery the first week is no fun. Take the pain killers, move slowly, but walk a lot! My intestines were my biggest complaint as they do not like being moved around then drugged! Binge watch a great netflix series and you will get through the discomfort. One week out and just taking Advil (normal kidney function so I am allowed) as needed but my gut is still protesting. Hang in there!

todd121's picture
todd121
Posts: 1258
Joined: Dec 2012

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

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