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Trying to Make a Decision on RCC Surgery

Rayman NY
Posts: 12
Joined: Jul 2011

Hello Everyone Just joined today. As the story goes, I found my RCC about 30 days ago by accident. Was having my first ever CAT scan for something unrelated, when they found a mass > 4cm on my left kidney and classified it as T2 and thankfully limited to my left kidney. My primary care physician sent me to a Urology here in Western New York who is very good. His diagnosis was a complete Left kidney removal using a laparoscopic procedure. I didn’t stop there, we traveled to The Cleveland Clinic where the Doc inserted hope that he might use meds to shrink the tumor and possible save 40 to 50% of the kidney. After undergoing a renal scan at the clinic the phone call back from the Doc was not as encouraging. Apparently the size of the mass (about the size of a baseball) cannot be helped by meds and now CC doc is not sure about a partial Nephrectomy. His position is that it would be a game day decision and to whether to save it or not. That means s your start with an open procedure and the doc will make a determination if a portion of the kidney can be saved. I returned home to visit my primary care physician who read me the riot act on not having an open procedure. I am 54 yrs old and the recovery from an open procedure as I was told and have been reading the various post is brutal. The potential for infections, hernias, and never completely healing where movements even coughing will bother you for the rest of your life is heavy on my mind .My doc‘s concern that the Cleve Clinic Doc wound not do the actual surgery, but supervise the chief resident in training. I am now thinking about seeing a Doc at the Roswell Park Cancer Institute for a third opinion. All my readings, say save as much as you can of your kidney as people with a kidney and a half live better, longer lives. On the other hand trying to evaluate the risk / reward of an open procedure to save a portion of a kidney which I don’t know how much function I will have nor for how long. Also, I am concerned that can RCC return to the remaining smaller kidney. With all that be said, I would appreciate any feedback you guys have as I try to make my decision as my time is limited.

donna_lee's picture
donna_lee
Posts: 426
Joined: Feb 2009

I think I am a voice of experience..."Gofer It."
I am now 68, and had my first surgery for Stage IV (it had metastsized to the liver, and to nodes) in 2006 at the age of 63. Your 4 cm tumor is more the size of a ping-pong ball than a softball. To compare, mine was 12.5x 8.5 x 5-more like a medium baking potato.
Trying to do an invasive surgery with a lap procedure is more difficult, especially when the surgeon is not sure what he'll find. I do feel that it's easier for the Doc to start as if he were doing a radical and scale back once he sees what is there.

The recovery does take time, as any major surgery does. There are the after effects of anesthesia/and the length of time under anesthesia, the muscle weakness from being tired and not moving about, low appetite, and just generally needing help with shopping and stuff around the house. I had a set-back at three weeks post and had a mild pancreatitis attack, so my recovery was more like 6 weeks. By then, I was doing the grocery shopping as long as someone did the heavy lifting, working a few hours a day at my job, and doing water exercises to build up my strength and endurance, and of course driving to town, etc.

My surgery was compounded by having to remove part of the liver, a set of 11 nodes (2 positive) and a poorly functioning-congenitally defective gall bladder; which took 11 1/2 hours in surgery. Although Surgery was started on Wed. afternoon, I didn't get to ICU until sometime on Thursday, but I still left the hospital on Monday.

My only major on-going concern has been to maintain a healthy, low salt diet to keep my remaining kidney functioning as well as it can. Regular CT scans caught two cancer recurrences in nodes, which were both removed with open surgeries due to the locations.
I won't say they were both a breeze, but I helped drive home from the hospital when the first node was removed at a regional medical center/teaching hospital 5 hours from home.

Don't let all the bad things you read affect a well thought out decision. It's like reading the side affects that could happen if you take certain drugs...you may have one or two, but not all of them.
I would be concerned with making a decision and getting a surgery date. Your diagnosis was recent; but in discussing it with other renal cancer survivors, some tumors grow slowly and others rapidly.

No doubt about it, what you are experiencing is scary. Once you make up your mind you are not going to die, that you will get through the surgery, and get on with living as normally as you wish, you are on your road to survivorship and being one of us Senior Citizens.

I hope you have a support group of others who have been through cancer. Their perspective and experience will be able to help you sort out thoughts, fears, emotions that sometimes family does not want to deal with.
Best wishes as you make choices.
Donna

BG
Posts: 85
Joined: Jun 2011

From my experience, the doctor that did my partial laproscopic via robot (3.5 cm) indicated a tumor at the pole of the kidney is a good candidtae for a partial. He also indicated, once in there with the partial, they may need to convert to an open and remove entire kidney, but not likely.

I ended up with the partial with no need to covert to open, and now at 4 days post surgery I am home moving around fairly easy. I wish you the best, my prayers are with you..

I wonder if the above approach would be an option for you?

BG

icemantoo's picture
icemantoo
Posts: 1622
Joined: Jan 2010

You are going to have to make a decision between your doctors and you. Every one else's situation has its own little nuances. When I had mine 9 years ago at age 59 and it was 2.7cm on the CT scan and 4.2 cm when they finally got the little rascal out. Mine was laprocsopic and they were not doing partials then. The important thing is to get the little rascal out before it spreads. Once the tumor gets above 4cm the chances of a full and complete recovery from the surgery start declining from the 95% level. The surgery is not fun and yes they may have to make a game day decision ( I was told that my Laproscopic may turn into open surgery), but the surgery beats the alternative.

Best wishes,

Icemantoo

Rayman NY
Posts: 12
Joined: Jul 2011

Thank -you for your encouraging words. I am trying to find I support group to help me deal with what has been the hardest decision of my life. Thankfully my wife has been my rock all this time. In the next couple days I will meet with the Doc’s and make my decision.

Keetasa
Posts: 1
Joined: Jul 2011

Hi Rayman,
I went to the doc about a completely different issue and by accident a mass was found inside my right kidney that was in January of this year and I was told there was nothing to worry about as the growth was only 2.4cm and to have another CT scan in 3 months. I had my CT scan and although the mass hadn't grown in size there was now another growth growing to one side. The Urologist said that he would talk to his fellow Urologists and discuss my case on whether a partial or full removal of my right kidney would be best. I wanted him to do a full nephrectomy - they came to the same conclusion as me. On the 26th July I had my right kidney removed,via hand assisted key hole surgery, everything went really well. The team of doctors were really good. I was put on a self-administered morphine drip (no, you can't overdoes as it is controlled). I came home on Friday 29th July - 3 nights in hospital. I was topped up with drugs for the 1+ hour drive home - I am so glad that I did say yes to that option when the nurse offered it.
I wasn't too bad when I got home however about 12 hours later I was woken with pain - this was due to me not taking the pain medication when i should have. I felt that as I didn't have too much pain that I wouldn't take the pain relief. The nurse told me that to should take my pain relief when it is due so that I can keep the pain under control and improve my rehabilitation.
Good luck with everything I would like to hear how you get on.

icemantoo's picture
icemantoo
Posts: 1622
Joined: Jan 2010

Welcome to the club. Although the initiation was not fun, it sure beats the alternative.

Best wishes,

Icemantoo

Jamie1.3cm's picture
Jamie1.3cm
Posts: 188
Joined: Jan 2011

Gary, I too did that hike in August, but I was a strong 18 yr old at the time. It about killed me. Take LOTS of water.

Rayman NY
Posts: 12
Joined: Jul 2011

Hello everyone , tomorrow Sept 09 is surgery day for me almost 7 weeks after my Rcc was discovered. I have decided to have an attempt at an open partial Nephrectomy of my left kidney at Roswell Park Cancer Institute in Buffalo New York instead of Cleve Clinic. The anxiety of waiting for surgery is awful as probably most of you have experienced. You want the day to come and you don’t and you hope and pray that it doesn’t grow further until your operation date. Tomarrow will be the most difficult day of my live. I haven’t been in a hospital since I was seven years old…..
Thanks to everyone for sharing your feeling, thoughts and concerns. I hope to return and post good news.

icemantoo's picture
icemantoo
Posts: 1622
Joined: Jan 2010

Rayman NY,

I was not that excited when my big day came 9 years ago. I almost fainted when Arnold S. went into labor in the movie Junior. I do not like going to the doctor or dentist. I finally resigned myself to the surgery and yes it was painful at first, but everyday gets a little better.

Best wishes,

Icemantoo

ams123
Posts: 71
Joined: Aug 2011

Rayman - my surgery is tomorrow morning also. I am having davinci robotic laparoscopic surgery, but my surgeon won't know if he can do a partial or a full removal until he is in there due to the location of my tumor. The tumor is small, 3cm, but in the middle of the kidney, not at either end, and close to the renal artery and vein.

It is an anxiety provoking situation, isn't it? I had my babies via c-section, but I have never had general anesthesia. I have no idea what to expect, and I don't like uncertainty.

Best of luck to you tomorrow, it's kind of nice to have a "partner" having surgery at the same time as I am. I'll be thinking of you.

Linda

Vagusto's picture
Vagusto
Posts: 86
Joined: Aug 2011

Linda
I will be thinking of you tomorrow morning, and pray for a quick recovery.
Valerie

Vagusto's picture
Vagusto
Posts: 86
Joined: Aug 2011

Rayman
I will be thinking of you tomorrow. I waited about 3 weeks, and I think I counted every second that went by. The recovery is no picnic, take time to heal, and DON'T over eat at one time.
Take Care
Valerie

KatfromFlorida's picture
KatfromFlorida
Posts: 66
Joined: Aug 2011

Hi Ray: Hope all went well with your surgery today.... Mine is next Tuesday...Sending prayers to you and yours... Many Hugs

kat

DarrylPe's picture
DarrylPe
Posts: 75
Joined: Mar 2011

Hi Ray hope all went well keep us posted. Hi to you too Kat I'll be praying for you on Tuesday good luck.

Rayman NY
Posts: 12
Joined: Jul 2011

Hello everyone. I am now officially part of this group. I had my open partial nephrectomy done on my left kidney. The tumor size was 8.5 cm slightly larger then what the cat scans showed. Despite the size Dr.Schwaab was able to save 60 % of the kidney function. The surgery was longer than expected and as the Doc said to my wife “we pushed the envelope” on this one.
As a result, I ended up in the ICU for two days because I had lost so much blood. On the third day I was transported to a regular room in anticipation of being discharged. However, I developed a case of Ileus, which basically is a shut down of the entire gastro system where no gas, liquid nor food can pass through. All I had was juice and water for the first two and half days. As a surprise, when the staff weigh me I had gain 24 lbs without eating a thing.
The next three to four days were the most difficult days of my entire life. All water was taken away, my stomach was pumped using a G tube and back on the catheter I went. The fluid and gases were pressing on my diaphragm and breathing became difficult. I was close to going back to ICU and possibly surgery to relive this painful gas and bloating. My wife spent the nights with me and with help of the nursing staff and my Doc checking on me five times a day I pulled through this most difficult time. Anybody who has had Ileus will know what I went thought. Finally on Sat Sept 17, I had my first glass of water and food.

Dr. Schwaab shared and explained my pathology report. In fact, the tumor was Cancer (there was a small chance that maybe it was fatty tissue gone wild). The GOOD news is that the cancer was identified as Chromophobe, a rare form of kidney cancer affecting 3-5 % of the population. It is biologically a tumor of low malignant potential despite its 8.5cm size, Dr. Said there was a negative margin left behind, which means as of today I am cancer free. All Gory Goes to God, by his grace I live……

All in all I spent 12 days in the hospital, and have a 10 inch flank incision. Everything I read here in the posts about recovery is true. Sleeping is tough at night, I am lucky to get three to maybe four hrs of sleep. I stopped taking narcotics back in the hospital because it was contributing to my Ileus. I am using Tylenol extra strength and a lot of water. I am happy to say I have lost that extra 24 lbs of water that I gained. Recovery is slow but I am trying to take one step at a time. This Wed I go back to Roswell Park to begin my five years of testing.

I want to thank all of you for posting your thoughts, prayers and wishes. I will be more active in posting in effort to give support as I have received so much from you.

KatfromFlorida's picture
KatfromFlorida
Posts: 66
Joined: Aug 2011

Dear Rayman:

I just want to say that it is great to hear your finally doing better... I had my surgery on Sept 13th and you are my hero!!!! . Today is better than yesterday and tomorrow will be better still ..... My tumor was 6 cm by the time they got it out. Having some back pain today and haven't slept in my bed since before surgery. My recliner is my friend lol.
I am not taking a lot of pain meds usually only 1 or 1/2 of a pill a day but only if the pain gets bad. Finding myself a bit teary eyed for the past few days for unknown reasons and think that I will need to contact my doc about some anti depressant drugs as it appears I may be having some post surgery depression :( My cancer is gone now and I should be happy happy happy but I'm finding that I'm sad for no reason..... I gained a few extra lbs from water myself and I am finally starting to lose that and found that the gas pains were the absolute worst thing about this entire ordeal. It was at least 7 days before that pain finally went away. OMG not something I want to experience again :)
Praying for you each day that your recovery is quick. Keep us posted on how your doing !!!!!
My Best
Kat

Rayman NY
Posts: 12
Joined: Jul 2011

Hi Kat
Thank- you for you thoughts and prayers. I spent 10 days in a recliner at the hospital. I could not use the bed. My first nite at home was in a recliner. I have started to use my bed but I can only get 2 to 3 hrs of sleep before the pain returns. When I sit up in a chair or using my recliner that pain is minimal. When I try the bed.. look out.. I am hoping that this is temp.
I happy to hear that your Cancer is gone. When the Dr. told me I cryied and thank god for another chance to live. From what I have read the post surigcal sadness is not uncommon. Checking with your Doc on it is never a bad idea.
Hoping nothing but the best for you and keep us posted too

Ray

ams123
Posts: 71
Joined: Aug 2011

Rayman - so glad you checked in so we know how you are doing. It sounds like your post-op period was awful, I didn't know about those complications before (luckily!) I thought my 6 pound weight gain in the hospital was bad, but it was nothing compared to yours. Did you have a blood transfusion? I lost a lot of blood too, and had to have a transfusion before I left the hospital. I was surprised that I lost so much blood since my surgery was laparoscopic, I asked the doctor about it and he was noncommittal.

It's so great that you had clean margins on the pathology report - what a relief, right?

I hope your recovery goes incident free from now on, get a lot of rest, let people take care of you. Open surgery even without complications is very rough on the body, and yours has been through the wringer.

Linda

rae_rae's picture
rae_rae
Posts: 270
Joined: Oct 2010

Glad to hear the worst is behind you. Prayers for a speedy recovery!

Rayman NY
Posts: 12
Joined: Jul 2011

Hi Linda

I had to have 4 litres of blood during surgery because the Dr. did not want to clamp the artery. Instead he had me in a controled bleeing state as he did the surgery.
The best possible news to hear is that all the Cancer is gone. I still tear up when I tell the story to family and friends.
I am glad your doing well in your recovery and me posted.

All the best

Ray

garym's picture
garym
Posts: 1651
Joined: Nov 2009

Hi Ray,

Good to hear you are doing so well following what sounds like quite an ordeal, most of us have had it a bit easier than you I think. Take it slow for for a few more weeks and don't be tempted to overdo when you start feeling stronger, you'll be your old self before you know it.

Best wishes and smooth sailing,

Gary

Rayman NY
Posts: 12
Joined: Jul 2011

Hi Gary

Thanks for your well wishes. Its all baby steps. I went for my first follow - up visit yesterday. So far so good for being out of surgery three weeks tomarrow. I looking foward to driving a short distance tomarrow just to get back into some sort of routine

Take care

Rayman

carlkcs11
Posts: 11
Joined: Sep 2011

RaymanNY:

I am new to this club too. 1 week and a day removed from surgery. I am glad you are on the mend. The general advise that seems to be present on these post is to take it slow, don't push it.

Best to you.

CARL

Rayman NY
Posts: 12
Joined: Jul 2011

Carl:

Welcome to the club. It will be 1 month tomorrow that I had my open partial nephrectomy. Upon discharge I asked the nursing staff a lot of questions about a post surgery diet. Their advice was as follows:

Do not skip meals; eat a well balanced low fat low sodium diet. More fruits, vegs and less animal proteins. I as a rule, I do not eat red meat so that helps me a lot.
Drink plenty of water to cleanse your body especially after surgery. Be careful of alcohol consumption. Hard liquor is tougher on your system. Beer brings a lot of sodium to your system. At my first post op visit with my Doc last week, one of my first questions to him can I have a glass of wine? To my delight he said yes to moderation. I have not had that glass yet but look forward to enjoying it soon with my family. Everything in moderation.

As I am finding out, its one step at a time

Best wishes and keep us posted

Rayman

carlkcs11
Posts: 11
Joined: Sep 2011

Rayman
Hope you are feeling better. I have gotten a lot of advice on this site. I was a big meat eater before especially burgers and pork dishes. I have decided to remove these from my diet. I was also guilty of drinking alot of fruit punches, flavored iced tea,and a beer or two (or four) over the weekend. I now just have water or brewed green tea. Plus oatmeal is my morning breakfast, instead of a stop at McDonald's. I realize that I needed to change things in order to feel more in control of this "Kidney Monster".

I am offically two weeks out from surgery today and will go to the gym to walk the treadmill or do the stair master. Also need to start rehabing my shoulder which sustained some nerve damage during the lengthly DaVinci procedure. But I am beginning to feel much better thanks to all of the support here and from my family.

Thanks
CARL

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