Starting the Journey

Sully,

Welcome to the club which no one in their right mind would volunteer to join. My initiation was 13 and 1/2 lucky years ago. Hopefully you will get a good diagnosis and have only the Neph to look forward to. Not easy to deal with at first. My wife sort of went bonkers and it wasn't even her kidney being yanked out. These crazy feelings you are going thru now will sort themseves out. About the only good thing I can say about the surgery is that it is a hell of a lot better than the alternative.

Icemantoo

I recently completed my first step in this journey.  I got quite lucky when my two tumors were found incidentally during a CT scan for an unrelated problem.  I waited about 3 months after CT scan before I had surgery.  So I was able to a lot of research in those three months.  I will share with you my experiences and lessons learned.

1. Always get a second opinion, unless you start off at a major cancer hospital, and then too if you feel like you need a second opinion, get one!

2.  Find out how much experience your doctor has with this type of problem.  The doctor I originally saw was a talented urologist who specialized in kidney transplants.  I had no doubt he would have taken great care of me, however, I wanted to see a doctor that sees this problem in his/her office two or three times a week, NOT once or twice a month.  I went to MD Anderson.  When I went to MD Anderson I took my CT films with me and they spotted a second tumor on that same kidney.  It was small 0.8cm, but it was still there and no one in OKC said anything about it.

3.  Until you have pathology results back, no one will know for certain if you have cancer.  CT scan will give a better idea what you are dealing with.

4. Keep a pen and paper handy throughout the day and write down questions you have.  I've seen patients forget most of their questions as soon as the doctor walks into the room.

5. Don't pay attention to the survival rates you find online including the one listed on this website.  The one list here is based on a one year study done 15 years ago and includes people who may have died from something else not related to cancer.  

6. There are a lot of new treatments for kidney cancer and even more coming soon.  I'm not sure that a cure is coming soon ,but rather treating it like a chronic condition.  

Good luck and please let us know how you are doing!

Jason 

My tumor was 6 cm and grade 2 . Had my nephrectomy back in May 2014 at MD Anderson. I am still cancer free. Welcome to the group and keep us posted.

hardo718 said:

I'm new here too....

....been here a few days now.  Welcome!  I had my surgery a few years ago but recently decided maybe I needed to connect with others that have been through the same or similar thing.  I'm glad I found this form, and I think you will be too, just wish I'd found these people sooner.  Lots of information shared and lots of love & support from people that all have something in common.  You will get through this, one foot in front of the other, just stay as positive as possible.  I'll keep you and your wife in my prayers Sully.  As hard as it is on us (the patient) I think it's probably in some ways worse for the caregiver.  I know my husband, supportive as his is, ended up a few months later with a doozy of a case of the shingles.  I guess the stress really got to him too.  

Keep us posted on your progress through this journey.

Donna~

So sorry you had to join our exclusive club but you'll find a very informative and supportive group here. After the CT scan they'll have a better idea of actual size, so with a highly experienced surgeon who specializes in kidney cancer it may even be possible to save your kidney with a partial nephrectomy. Recently they've been going as high as 7 cm with partials. Provided it's still completely contained in the kidney you're in stage 1 which is the best possible time to find it. Make sure you see a urologic oncologist, not just someone who has limited experience with kidney cancer. Whatever suggestion your urologist has for surgery, make sure to get a secon opinion, at the best possible place. It's a frightening word to hear and it's often worse for the spouses. If it were my husband who was diagnosed I would have been a complete basket case. Perhaps have her post here; there are many spouses and caretakers who would be able to reassure her that you'll be alright. WIshing you the best!