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My introduction

JoanneNH
Posts: 59
Joined: Sep 2013

Hello everyone.   New poster who hopefully will enter the ranks of being a kidney cancer survivor. 

I had a CT scan of the chest last week, ordered because of a small pleural effusion showing up on a chest x-ray (ordered because of a wicked cough though to be due to my new ACE blood pressure med).  Unexpected finding was a 7.5 cm x 7.6 cm mass of my right kidney.  Also showed a "mass effect"of the IVC and right renal vein.  I am awaiting my appointment with a highly recommended urologist.

Though I have just found your web site just last evening, I haven't seen anyone talk about getting an IVC graft at the same time as a nephrectomy. i don't know yet if it has invaded the IVC, but hoping so much that it isn't the case.  Kidney function tests are normal, GFR normal, so left kidney appears to be working and I really need to protect it.

I'm learning a lot just by reading the other posts.

I feel extremely lucky that the tumor was found, as we almost didn't get that initial chest x-ray. 

icemantoo's picture
icemantoo
Posts: 1598
Joined: Jan 2010

Joanne,

 

Welcome to our club which nobody in their right mind would want to join. There are members with a lot more baggage than yours who are doing fine. At 7.6cm their may be challanges beyond the initial surgery, but lets hope not. Faye across the street started with mets to the lung at age 64 and she is now 82. I had it easier at 4.2 cm and I have 11 years as  a survivor behind me.

 

Hopefully you will get the answers you need at your next appoimtment. They will no doubt set a surgical date Which ALL of us have gone thru.

Not fun, but it beats the alternativr. Glad to see you are starting with good Kidney function. All of us lose a small amount of Kidney function with a neph. and as we age, but if you watch your Kidney Health you should be able to live for many, many years and as my doctor says you will eventually die, but not of Kidney Cancer.

Icemantoo

 

GSRon's picture
GSRon
Posts: 1306
Joined: Jan 2013

Hi Joanne..  There are a few (or more) of us here that indeed had some form of Renal Vein Invasion. Here is my story, but yours may be different.  

I do suspect you may be guessing about a graft, unless your Surgeon mentioned it.  What I had done was sort of a "roto rooter" procedure to remove the Cancer from that area.  In my case, this was a pretty long surgery, and a separate surgical team did that part of it.  It took around 8 hours.  I also thought there would be some form of graft or vein replacement, and when I asked my surgeon afterwards, he sort of smiled and told me that doing that kind of procedure would not likely have a good outcome.  So, they did a small opening in the vein and scraped the Cancer out.  Then checked for more signs of Cancer, then repeated the process until they felt I was "clean."   Actually, I was glad I had not asked that question before surgery... I knew I had the right Doctors, so my only worry was the surgery itself. 

Now, in my case, my Kidney Surgeon is well versed in this type of procedure, he said he sees about 10 cases like mine a year.  So, they did what they called an "intervention" the day before the big surgery.  This procedure (remember it is not called a surgery) clamps off the blood supply to the Cancerous Kidney.  They close off all the blood vessels they can find.   This does two things, first it starts to kill off both the Cancer Tumor and the diseased Kidney, and it shrinks the Kidney to make removal easier.  I think my Dr perfected this procedure, which was done the day before.  This also had more benefits, first, I got hooked up to all the tubes, plus it got me entry in to the Hospital the day before, and it took a LOT of the stress out of the whole ordeal.  The next morning, I do remember the nurse starting to shave my body, and while I was reminding her that it was my Left side (while she was shaving my right side), another nurse slipped the "Mickey" in to my IV from behind me.. next thing I knew was... waking up afterwards..!  This really reduced a lot of stress for me.!

So, it sounds like you will have a long surgery and that I suspect they will open you up a bit more than just a Nephrectory would be.  I got opened from the breast bone to just above my navel, and to both sides..  yes a lot of staples..!!  Now my breast bone area was very sore for about a month... and the pain continued for serveral months, but lessened along the way.

Now here is the big tip... the electric bed can be your enemy..!  The nurses love to hit the button and raise and lower you.. also they like to turn you from side to side.. that HURTS..!!   I had to warn the nurses to NEVER touch the bed controls.. but let me do it.  I would move it only a very small amount and let my body adjust then repeat until I got the bed where the nurses wanted it.  Remember your body just got a major assault to it, so any movement means your innards have to adjust a bit.  I should charge for that tip..!!  :)

Also, I was walking on day 2.  Well actually, I got up with assistance and shuffled my feet to use a commode.  Once I was up, no problem doing a shuffle - shuffle to make me a bit mobile.  Once they know you can walk, expect to be walking several times a day.  That walking gets you closer to going home..

Good Luck..!

Ron

JoanneNH
Posts: 59
Joined: Sep 2013

Thank you.  After I have my appointment, any additional tests, and surgery date, I'll let you know.  

Looking for any additional hints for my recovery (such as not letting the nurses adjust the bed--leave that me), things that you found helpful.  I usually live in T shirts which I know will be hard to put on, so will be hitting up the second-hand stores and stocking up with some button shirts and I don't care if they are for guys.  Special pillows?  Walker to help move around the house?   Things like that I could prepare for.  Ice packs? Heating pad? 

Do they usually give you some good pain meds for the recovery period?   

Did anyone have an "insult" to their good kidney and have to dialysis for a while?  

I think getting helpful info from people who have actually gone through this is better than what the doctors could suggest.

I am so very glad that I found this forum!

 

 

Suekub's picture
Suekub
Posts: 124
Joined: Apr 2013

I was in hospital for a week after surgery and left hospital without needing any pain relief. Apart from fatigue and the inability to drive for couple of weeks recovered very quickly for which I was thankful. The only problem I had whilst hospitalised was only being able to sleep on my back which was not normal for me and this was compounded by the extremely uncomfortable hospitable bed! I think I was lucky in recovery and seem to have a high pain tolerance level. I did wear yoga style pants and loose tops for a short period. Staples came out 10 days after the operation (I had a midline incision of about 30 cms). I had no trouble with mobility and my remaining kidney has continued to function normally and if truth be known it has probably been my only functioning kidney for a while before I had my 20cm tumour and kidney and adrenal gland removed.

hope all goes smoothly for you.

Sue

GSRon's picture
GSRon
Posts: 1306
Joined: Jan 2013

Hi Joanne.. yes, insult is being polite.  Not sure if you will get the same type of procedure as I did.. but the dye they use to find the "hot spots" can cause stress to your good Kidney.  During the operation, they scanned me using the dye to find out if they got it "all" which really means if they got all the visible Cancer.  Those extra tests (I have no idea how many) put my good Kidney on the "watch" list.  My Createnine went as high as 7.6 days after the operation, and the one Dr was drooling over the opportunity to put me on Dialysis..  However, my (smart) surgeons (yes there were several) had pumped me up with like 10 liters of fluids to flush all the dye out of me.  And I was in the ICU all that time, so I could be closely monitored, which was 10 days.  However, my Doctors were confident, and my Createnine finally went on the decline, and no Dialysis was needed... whew..!!  All the extra fluids that they pumped me up with made my lower half of my body was like a big water balloon.  The Doctors monitored the fluids coming out of me (yes through that awful tube), and they KNEW my remaining Kidney was still working well as the output was as expected.  I won't go in to all the odd / funny (now) details, but they put on those vibrating leg covers to stimulate and help recovery. 

If this sounds a bit scarey, please do not worry.. Once I woke up from surgery, I felt like I just won the lottery..!  All the peripheral stuff was just a new experience.  I was in great spirits and was joking with the Doctors and Nurses.  And once I started walking down the halls I would wave and smile and flirt with everyone.  Hopefully, me being so cheerful helped others.. while I am sure some thought I was crazy..!  Oh yes, when I finally got moved to a semi-private room, I made Choo Choo noises as I got moved down the hallway.. I KNOW some folks thought I was in the wrong type of hospital..!  So, my comments are, even with all the post sugery pain, life was indeed good..!!

Oh almost forgot.. the staff were very good with me overall.. and the Drs made sure I had enough pain meds when needed.  And talking about your pain control is something I think you should discuss before the surgery.  There are choices and I can not honestly tell you which is best.  I made my choice and would do it again.  I had the green button to push, give it a push and the relief is on it's way.. but that takes a few minutes.  Others get an epidural or maybe both, I do not know.  But no one wanted me to be in too much pain, and I was repeatedly told to call for assistance when needed.  And I was sent home with pain pills with orders to take as needed, but I chose to take as few as possible.

Oh yes, and T shirts were not an issue for me.. my upper body was fine and in good shape.  In the hospital I did use a walker for one day, then I did not need it.  Actually, I never needed the walker, but mentally I did not know that.  My body handled walking very well overall.  It was that first time standing up that was my biggest concern.  I did not know that my legs would hold me up, but they did.!

One more important bit of info.. that first B.M is critical.  I was regular on day two, others here take days and days to do that deed.  And yes they will likely monitor that as well.  I am now less shy about my body, as that first time up I used a portable commode they brought to my bed side area.  I stood up, they took the gown off and I went and sat down.. all in plain view of a very large window with a lot of folks in viewing range..  I hope they got a good show..!!

Ron

 

JoanneNH
Posts: 59
Joined: Sep 2013

I wanted to give an update on my surgery which I had on September 17.  I had a right complete nephrectomy with tumor removal via a laparoscopic procedure.

 

I was in my hospital room at about 5 p.m. the day of surgery and the next day at about noon, someone came in and said "you can go home this afternoon."  SAY WHAT???  I had not even walked yet.  I told that person (I think a nurse) that I didn't feel comfortable going home so soon and asked that  the urology resident be notified that I wanted to stay the night for medical supervision.  I ended up staying 2 more days.  I was to be discharged on Thursday, but my sodium was low, so they kept me overnight to get it up.  Had to take 2 salt tablets (separate times) and got it back up.  I was able to leave Friday, September 20.  When I got home, I weighed myself and I had gained 20 pounds in fluid!!!  It's gone now (with a little additional weight loss).

 

Pathology report:  renal cell carcinoma, clear cell type, Fuhrman grade II, size: 7.5 cm x 6.8 x 2.6 cm.  Tumor limited to kidney; margins uninvolved by invasive carcinoma.  Adrenal gland: uninvolved by tumor.  Venous (large vessel invasion): absent.  Lymphatic (small vessel invasion): absent.  Primary tumor stage:  pT2a (limited to kdiney > 7 cm.  

 

During the intervening time between discharge and now, I have been gradually walking (from 20 to 45 minutes) a day, I can now touch the floor, off narcotic pain medication since 9/30 early a.m.  I drove briefly today to the dump (about a 15 minute drive total).  

 

I am still having a terrible time sleeping, though, going from the very comfortable couch to the bed, back and forth until I am exhausted.  Appetite still not back.

 

I saw my nurse practitioner last Friday and she did some lab tests.  Sodium was in good range.  Creatinine 1.1 (normal 1); BUN 34 (normal <21).  BUNs before surgery were completely normal, so I am not sure of the significance of the very tiny elevation in the BUN.  I am seeing my surgeon tomorrow and also an oncologist to talk about a clinical trial I am eligible for.

 

But all in all, I feel I am VERY fortunate that this was found, my hospitalization was uneventful, and now I am recuperating.

twinthings's picture
twinthings
Posts: 403
Joined: Jun 2013

Joanne, it sounds like you've had the best possible outcome!  I'm glad to hear you are doing so good, so soon.  My story is much like yours, in that, it was an incidental finding and Clear Cell type.  My tumor was much smaller than yours, at just 4.7 cm.  But, because of it's size, it was Fuhrman grade 2, margins were clear and it was contained to the kidney. 

I'm curious about the clinical trial you make reference to.  Did your surgeon suggest a clinical trial or did you ask if one was available?  And, did your surgeon refer you to an oncologist to co-manage your care?  It's interesting to me how different the standard of care is, depending on what doctor you see.  My surgeon will not refer me to an oncologist until he releases me from his care, at 1 year post-op.  I am currently 4 months post radical nephrectomy.  My surgery was without complication and my recovery is going exceptionally well. 

I read stories like Ron's and realize how truly blessed I am and how little I have to complain about.  Still, I can't help but worry about when and where it'll get me again.  I try not to stress about it and just bask in the glory of being cancer free but, it's always in the (not so) back of my mind, creeping into my thoughts at any given moment on any given day. 

Hoping your recovery continues on the right path!

Sindy

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