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HELP! Have an appointment early tomorrow

Jojo61's picture
Jojo61
Posts: 388
Joined: Oct 2013

Hi Friends,

I got a call this afternoon that I have an appointment to see the uro-oncologist tomorrow morning. So I had to race around this afternoon to get disk copies of the scans that have been done so far.

I brought them home, and my husband loaded the cds on the computer. Kinda cool, actually....but looking at the pictures is kind of silly, because other than the spine, I can't figure what anything else is!! LOL

The growth seems to be slightly smaller than what the urologist told me...which is good. Here is the report:

"There is a large heterogeneous avidly enhancing right kidney interpolar lower pole mass, measuring approximately 11.3 x 9.7 x 10.7 cm. There is extensive central necrosis. The collecting system is compressed and displaced, without definite invasion. The main renal vein is not involved. An accessory renal vein drains the lower part of the mass, joining into the IVC  inferior to the main renal vein. No accessory renal arteries are identified. The adrenal gland is not involved. The mass extends to the tip of the liver without definite invasion.

In segment 6/7 of the liver there is an ill defined hypodence lesion, which demonstrates perepheral nodular enhancement and filling in on 5 minute delated images consistent with a hemangioma. It measures 2.0 x 4.0 c. There is a background of mild fatty liver."

I have been reading so much that my brain is all muddled and confused - and I kind of have stage fright. So, I hope you can give me some advice and some questions to ask the doctor.

I have to leave at about 8:00 to get there on time. All this waiting and now whammo - they call me to come for an appointment in less than 24 hours! Go figure.

Thank you!!

 

 

 

icemantoo's picture
icemantoo
Posts: 1570
Joined: Jan 2010

Jo,

 

From reading your previous posts it sounds like the doctors are going to let you know where you are and what their plan is to get the RCC under control. You will probably hear that surgery will be very soon and what and how they expect to proceed after surgery. Now is the time for your questions as your diagnosis and surgery are unique to you, There will be more questions and answers for after the surgery.

The surgery is not fun and either is the recovery. Come in with a positive attitude and try and have a good sense of humor.

Knowing you are from Canada you may appreciate my humor a little. eh? My wife thought I shoukd relax at a B & B a few weeks before surgery on the Canadian side of Lake Huron. We went to  a nice British type restauant in town, They brought all of the entries out on the cart for display. At the time I was not amused by the Kidney Pie.

Take a few hints from us warrieors. Where comfortable elastic pajamas and sweatshits for the first few weeks. Take some medicine so you are not constipated 5 days out of surgery. Save the bikinies for next year

 

Icemantoo

srbelle1
Posts: 123
Joined: Jul 2013

can you post an update to yesterday's post?

sarah

Jojo61's picture
Jojo61
Posts: 388
Joined: Oct 2013

My visit went well. I liked the uro-oncologist immediately. He brought the scan up on the computer and showed me the kidney. It was 3 times the size of my good kidney. He mentioned that the tumor is attached to the liver and pancreas but is confident that he can remove it without problem. He still plans to remove it via laperascopy. The other surgeon popped in and looked at the scan and also felt it could be done. I hope they are right. Open surgery is so invasive...kudos to all of you out there that have been through that procedure!

He said I either got cancer from second hand smoke (I never smoked, but my parents used to smoke when I was young - and now my hubby does in the house - we have only been together for 3 years) or it is genetic. He advised that my siblings and children get ultrasounds every 5 years for assurance in case it is genetic. He did say that my tumor has been there for a long time.

He examined me and said "couldn't you feel this big lump?"I said yes, but just thought it was fat. He said "Fat just on one SIDE??".

He also believes that it is all encapsulated with no signs of mets. They will get me in to surgery within a month. He apologized but pointed out to us that he has patients coming from all over Ontario. They will prioritize and get me in asap. I am okay with that. 6 weeks recovery time.

He said I was stage 2 at this point, and possibility of recurrence 20-30%.

Once I got home, and read some more online, I realized that I should have asked him if he will also remove some lymph nodes - it is now obvious that not everyone seems to do this? Or do they only do it if they see anything suspicious?

So all in all it was a good visit!

The beast within will be gone soon!

GSRon's picture
GSRon
Posts: 1272
Joined: Jan 2013

Glad you are happy with your Dr.  But Lap Vs Open, pros and cons..  especially with a tumor that large.  Do not be surprized if it ends up open.  Keep in mind they won't really know until they get there... the scans are good indicators, but not always 100%.   Get your body in shape for the surgery, watch your diet and make water your drink of choice.

Good Luck..

Ron

izzycohen
Posts: 64
Joined: Aug 2013

Jojo,

The fact that the tumor appears to be contained is very encouraging.  Even though the procedure will be laproscopic they most likely will have to open you up somewhat to get the kidney out of you.  That's what happened to me.  My guess is that they will take at least a couple of lymph nodes.  My understanding is that the main renal vein not being involved is positive.

Pay attention to Iceman's suggestions.  I wore the loose fitting pajama bottoms for two weeks after surgery.  The pain medication is wonderful.  use it, but it does cause constipation.  The doctors will have ways of dealing with that.

Good luck.  Sounds like you are in good hands.  Thinking of you.

Izzy

a.oakley
Posts: 32
Joined: Oct 2012

Jojo.  What your doctor is saying to you sounds good.  It's so good to have a plan of attack and to have confidence in one's doctor.  I think you need it removed as soon as possible, and I'm glad that they are giving you some priority.  My husband had an open nephrectomy and he was up sitting in a chair the next day and watching movies with me.  He did push the little button that delivered pain medication as often as he could.  He was walking on Day 2.  He didn't have any problems.  Discharged in one week to home.  You will be okay, and if it turns out that they have to do an open nephrectomy, it too will be okay.

Jojo61's picture
Jojo61
Posts: 388
Joined: Oct 2013

Thanks for your responses. It is always helpful to hear everyone's opinions as well as their stories. Just knowing that others have done well with their surgeries and other treatments is a great comfort....as it is still the unknown for me. Hopefully a surgery date will be set very soon.

 

God bless!

 

Skagway Jack's picture
Skagway Jack
Posts: 78
Joined: Oct 2013

The hardest part is the waiting.  I was diagnosed Sept 17 and went into surgery 15 Oct.  Seemed like forever. My tumor wasnt as large as they are estimating yours to be, however they suspected prior to surgery that it might be involved in the liver.  In my case the urologist requested a general surgeon as a assist in case it had to be extracted from the liver.  Fortunately it was fully contained and easily removed.  Mine was an open surgery and I have a nice 9 inch scar to show for it.  My brother has suggested I tatoo a zipper pull at the top of it.  In anycase you will do fine no matter which way it comes out.  If there is one thing I have seen demonstrated in my short time here it is how strong the human character is when faced with adversity.  This forum is repleat with examples of that.  Good luck and keep us posted on things.

Jojo61's picture
Jojo61
Posts: 388
Joined: Oct 2013

Love the zipper tattoo idea! LOL.

My tumor is attached to(or pushing against?) the liver and pancreas. He said he will just peel it off the liver, but will have to be careful near the pancreas, but didn't show much concern about it. Even though the laprascopy seems like the least invasive, the bottom line is I just want "Arnold" out of there. (my husband is always impersonating Arnold Schwarzenegger from "Kindergarten Cop" and saying "it's not a tumor" so we decided to name this beast "Arnold" ;o)

 

srbelle1
Posts: 123
Joined: Jul 2013

jojo:

first of all, you have a urologist/oncologist (translation: experienced in kidney, bladder and prostrate) and someone you like/trust; great facts.

because of his experience and his belief that he can separate the liver and pancreas, he probably can and I would not assume that he won't be able to do it laproscopically.

it may be that he will take a bit of the liver so that any spread caused by the nephrectomy and the tumor won't risk a spread. At least, that was our experience with the removal of the adrenal gland (no cancer there at all) but he felt that separating it might risk spreading the tumor.

 surgical technology has come a long way and there are studies out that indicate removal of the cancer load will stabilize any growth and, in a smaller number of cases, even remission.

the stage 2 is likely because it is confined to the kidney although attached to both liver and pancreas. My husband was in the hospital for 3 nights and it would have been two if not for my insistence to avoid another intestinal obstruction.

 As far as pain, the pump in the hospital and dilaudid. At home, only tramadol or Tylenol for the pain.

exactly two weeks later, he was able to be Best Man at his best friend's wedding and able to drive 7 days post surgery.

the surgery only 1.5 hours; he told us before that there was a 20% chance surgery would be open but I think he was covering his bases.

you will be fine; don't know how old you are but often recovery is longer and more painful the older you get. He will be 67 in 2 weeks. 

Sarah

 

 

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