Having kidney surgery in February

todd121 said:

Welcome

Sorry you're having to go through this.

I had a 7 centimeter tumor in my right kidney and had it removed the same way two years ago in December. Mine was found just before Thanksgiving and removed on December 10th, 2012 a week before my 51st birthday. My surgery was done at UCI medical center. I had a great surgeon. I took 6 weeks off work for recovery and was glad I did.

My tumor was right in the middle of the kidney, so they had to take the entire kidney out intact and could not do a partial. I was told pre-surgery it was probably cancer, but they wouldn't know for sure until it was out. Because they had to remove it entirely in one piece, I ended up with a pretty large scar for a lap (about 6") plus the smaller scars. My tumor was just under 7 centimeters.

The cutoff for Stage 1 versus Stage 2 is 7 cm. Going into surgery I was told I was Stage 1, but when I got my pathology back I found out that the tumor had invaded some of the small blood vessels (they couldn't see that on the CT scan) and that got me an upgrade to Stage 3, Furhman Grade was 3, which is somewhat aggressive. Because of these two factors, I ended up with a prognosis of recurrence that was somewhat high (40-50%) so I decided to enter a drug trial for an adjuvant therapy. I did this at City of Hope under Dr. Pal. I took everolimus for 1 year and finished that about a year ago. (It was technically a double blind study, but I'm pretty sure I was on the real drug).

City of Hope is a good place to be. You'll be in good hands there.

You may have only seen urologist oncologists up to now, but I would get a consult with an oncologist soon.

Recovery? My surgery was on Monday and I went home on Wednesday. I live alone and was able to take care of myself. I did have my son bring me groceries and stuff for the first couple of weeks because they don't want you driving. I think it was about a month that I was driving. I took 6 weeks off work. It is painful, but not too bad. Drink lots of water and do lots of walking. I did a lot of walking and I think it really helped with the recovery. It took nearly a week for my bowels to wake up. That part is a little annoying. Don't use harsh laxatives to get things going. Just follow your docs advice. They'll probably give you something like senna (or you can get it over the counter). Walking and water helps. Eating a bland, varied diet helps. Avoid constipating foods and also if you can avoid opiate pain meds that will help. My doc gave me tramadol for pain. I only took it for 2-3 days after I got home and then I switched to tylenol.

They are going to get you up walking very soon after your surgery. The very next morning they had me walk to the door and back. I really didn't want to, but I did it. You'll do it too. By the end of the day I was walking down the hall.

Ok. It's no fun. But you'll manage like all of us here on the board did. You're going to be fine.

Get your hands on your pathology report as soon as it's available. Get a consult with an oncologist (a medical oncologist) soon. They are the docs that treat this disease if it ever spreads, and getting their opinion on your pathology report and finding out if there are any drug trials you might want to do is something they can help you with. The urologic oncologist may be a little hesitant to refer you. Mine didn't until I asked. I saw 3 different medical oncologists and I was glad I did. I got different opinions from all of them, and the last 2 I saw more or less agreed and they were the real experts on RCC, whereas the first was not an RCC expert and he gave me bad advice. So see an RCC oncologist. You're at City of Hope. Dr. Pal is terrific and he knows a lot about RCC. I saw him and Dr. Figlin at Cedars Sinai (his mentor). Dr. Figlin is one of the top RCC docs in the country.

Hope something I said helped. Please let us know if you have questions. Ramble all you want. We love it.

Todd

Bob.

Sorry you had to apply to join our club. Once you have the Neph you become a member for life.

Mine was 12 and 1/2 years ago and was anything but fun, but it sure beats the alternative.

It was also a lap and there were no robots then.

The worst part was hearing and dealing with the C word and whoever heard of Kidney Cancer before this? It was always what someone else got.

Things will get better. With a large tumor like yours you are going to have to remain vigilant for years.

Todd's recovery is typical. As I remember and aginst my advice he drove (as a passanger) to Vegas a few weeks after his surgery.  That can wait.

Icemantoo

I had a fist sized tumour on my kidney that was growing up a vein so they removed the entire kidney and the effected part of the vein, this was in May2013.

I'm not claiming it was a bundle of laughs, and I dont want to come over all FDR on you, but pretty much the worse thing about it was fear of the operation and the c word itself. I ended up with a 12" scar on my stomach which sadly was stapled rather than sewed shut so I couldnt get the whole Frankenstein look. Its pretty much faded now.

Good luck and try not to worry. These guys know what theyre doing.

calibob47 said:

Thanks to Everyone!

Thanks everyone for your replies to my inquiry! Todd thanks for your detail recounting of your surgery and recovery! The doctor I am having the surgery done by at City of Hope is Dr Clayton Lau. He did tell me yesterday my tumor is Stage 2 but could be Stage 3 if they find the lymph node has been compromised. They won't know until they get in. Your recovery sounds similar to what I went through back in 2007 when I had disc fusion surgery performed at Cedars Sinai. I still have some of the same scars left from that surgery. Thanks again for all of your replies it sure helps! Sharing your reservations & fears with someone else who has been through it already reinforces you. This is a great support group & I look forward to contributing my own experiences to help others going forward.

Bob

When you're ready and if you're interested, there are a couple of support groups I've gone to that I enjoyed in our area. There's a cancer survivors group in Pasadena and there's an RCC group that meets at Cedars Sinai that's sponsored by Dr. Figlin. Once a month we meet and there's a speaker on a related topic. There's food and a little sharing after the meeting. I like it because I get to stay plugged in to what's happening on the research front.

Also, once a year or so the KCA has a patients/caregivers conference at Cedars. They also sponsor meetings off and on in Orange County.

Personally, I felt better to learn as much about this disease as possible (stopping this side of reading many of the papers on the drugs, which, frankly, I found really hard to follow). Some people like that approach and some don't.

What surprised me moving from Stage 1 to Stage 3, was they didn't tell me that if the tumor was encapsulated but grew into some of the tiny veins inside the kidney, that can bump you from 1/2 to 3 also. In any case, you won't know anything for sure until you get your pathology back. I hope it's all good news (as good as it can be under the circumstances).

Todd

I had open nephrectomy with a 12" incision and stayed 2 nights at hospital, for me the whole surgery part wasn't that bad, my recovery was good and fast, the worst part was to cope with the "C" word. I had severe pain in the back because of the positioning during surgery for but after first week I got better and better. It was also impossible to lie down because as soon I went to sleep I had several coughs so I had to use two or three pillow under my head and back to sleep sitting, this got better after 5-6 days. I walked as soon as they asked me and did it a lot; walking helped me recover easier. My husband and I had an abroad trip during the fourth week post surgery with my surgeon's permission, what a good decision; it helped both of us to enjoy our time and recover mentally.

JennyDra said:

Bob, my husband just had

Bob, my husband just had robotic surgery to remove a mass in his left kidney on Monday. I was worried but it went very well and he is not in too much pain. try not too worry so much. It is best to get the surgery over with and just start your recovery. If you have any questions let me know. The people on these boards proved to be a lifesaver to me before the surgery. It makes such a difference.

 

sending you positive thoughts, jenny

Jenny,

It is nice to see within a few short days your transformation from the spouse of a newbie to helping with the new newbies coming down the road.

Icemantoo

cakubob , 

  I had Laparascopc surgey on right kidney . whole kindey removed. I was having left flank pain for several mths . I had always had blood in my urine since 1986 had all kinds of test done, amounted to nothing big. 2013 of March found out I had RCC, had the surgery in April of 2013 had the same surgery you are decribing ,it went well , went home the next day, DR said he was 100% he got ti all . all clear so far had follow up in August so far so good . next one is April . I ramble alot anywy the surgery was not as bad as I thought it would be , I felt great 3 weeks after, except for the shoulder pain from the gas. but anyway it went well , Better than we expected, I prayed alot and still do . So hang in there sorry you have to join this club, 

                                                          HOPE AND PRAY IT GOES WELL FOR YOU AND YOUR FAMILY.  Ree    Pss excuse my rambling .

calibob47 said:

Thanks to Everyone!

Thanks everyone for your replies to my inquiry! Todd thanks for your detail recounting of your surgery and recovery! The doctor I am having the surgery done by at City of Hope is Dr Clayton Lau. He did tell me yesterday my tumor is Stage 2 but could be Stage 3 if they find the lymph node has been compromised. They won't know until they get in. Your recovery sounds similar to what I went through back in 2007 when I had disc fusion surgery performed at Cedars Sinai. I still have some of the same scars left from that surgery. Thanks again for all of your replies it sure helps! Sharing your reservations & fears with someone else who has been through it already reinforces you. This is a great support group & I look forward to contributing my own experiences to help others going forward.

Bob

So Bob, I'm meeting Dr. Lau today to discuss my adrenalectomy. It looks like we'll have the same surgeon. I think he might be head of the urologic oncology department (or maybe it's just the urology department)...I probably have it wrong. When I read his bio it appeared he was the head of *something*. Which is not a bad thing.

Best of luck with your surgery.

Todd