Post surgery - lost/confused

todd121

I can relate...

My experience was similar to yours, but I had even fewer symptoms than you had. A week before Thanksgiving in 2012, I started having some blood in my urine. At first, no pain. However, the blood was visible and it scared me. I was on a business trip at our company headquarters in Santa Clara, Ca. I went to a critical care doc at night. They did blood work, and checked my temperature. She was thinking UTI, but that didn't seem to fit. She started thinking STD and gave me a real third degree on my sexual adventures (which were really non-existent, haha). She prescribed an antibiotic for UTI and sent me on my way.

The next day, I started getting pain on my right side that felt like a kidney stone. I had had those before so I knew what it was like. It got so bad, that I thought I was going to have to have an ambulance come to my work and get me. I had been talking to my uncle, who is an oncologist coincidentally, by telephone for a couple of days about what was going on with me. A friend drove me to the ER and the doc there decided to do a CT "just in case". I had him convinced it was a stone also. I passed a couple of blood clots while I was in the ER and the pain went away. Within an hour or two waiting in the ER, I had the result. I had a 6.9 cm mass in my right kidney, probably cancer. I was alone in another city far from home. It was quite a shock. I went back to my hotel room that night and I think the shock was almost worse than any physical problem I was having at that point.

I got back to my home the weekend before Thanksgiving and started trying to find someone who I could see quickly to get it taken care of. I ended up reaching the head of urology at UCI in Irvine, Ca and got a consultation set up that week. Another CT was ordered, this time with contrast. Surgery was scheduled for December 10th, 2012. At that point I was thinking it was Stage 1. Because of the location of the tumor, I had to have a radical (the tumor was in the center of the kidney). It was done laproscopically, but I had a good 6" incision across my belly (and 3-4 smaller ones). I didn't get the pathology result back until after Christmas. It turned out to be Stage 3 because the tumor had gotten into some of the small blood vessels and it was Grade 3, aggressive.

Because of this, I really wanted to do an adjuvant therapy. I found 2 local RCC experts in nearby hospitals at the City of Hope and Cedars Sinai, and both put my chances of recurrence at 40% or even 50%. I entered the Everest program late last January and am just about finishing up 1 year on Everolimus.

Honestly, I'm still reeling emotionally from the shock of having cancer. It comes and goes. It's not as bad as it used to be, but I'm still looking over my shoulder expecting the other shoe to drop. I know it's not good for me, but I can't help it. It was just such an unexpected thing to happen, and now that I know I have a high chance of it happening again, I just expect it to happen.

My family moved on a long time ago, but I didn't. And that's one of the sore points with me....They haven't had a problem to let it go and stop worrying about it. But I do. I would say I'm a slight hypochondriac now. I pay a lot of attention to health issues, and any little thing that goes wrong, I start to think cancer first.

I healed up pretty well. I only took 6 weeks off work. The surgeon did an outstanding job. My only gripe was he got the staging wrong and I wish he'd told me staging based on imaging isn't accurate, and he also way underestimated my chances of it coming back. He declared me "healed". In fact, he might be right and I hope he is. I do appreciate the great job he did.

I try to keep up with what's going on in the RCC world by reading here off and on. I go to the RCC support group at Cedars Sinai, which has monthly meetings and talks on what's going on and I go to a cancer survivors support group. I'm trying to work on diet and exercise, but have always struggled with my weight and continue to do so.

So, I can relate to your feelings. I was completely healthy when my cancer was found. I had no health problems at all, other than being a little too heavy (220 and I'm 5' 8"), I was in great health. It was very sudden.

I think posting/talking about it helps. Get to some groups if you can. I connected with an RCC patient last year who had had his kidney removed and we've become friends. We have lunch every couple of weeks and check in. We understand each other. I think it's hard to expect others to understand what we are going through.

Best wishes to you.

Todd

lawmanmike

I know how you are feeling!

Hi Joe!  So sorry you've been added to this list but glad to hear your surgery went so well!  I had the same situation as you two years ago...next week will be the two year anniversary of my surgery.  I understand exactly how you are feeling... it happens so fast once they find it and you get caught up in the whirlwind of surgery and coming to grips with the fact that you actually have cancer... and then after surgery the real emotions hit.  It's still hard to believe 2 years later that I had cancer.  I sometimes wonder why me?  Why did I have cancer and why did I survive when so many I know have not... those feelings are natural, I suppose, but never seem to go away.  I am thankful every day for the simple gift of life and for being able to see my son grow up.  I try not to get bogged down with the feeling that it might come back.  Not sure what your doctors are telling you but from what I've read and seen the risk of recurrence is pretty small and most importantly, now you will be vigilant about it for the rest of your life so if it does return you can hopefully get ahead of it early and beat this thing if it ever rears its ugly head again!  I will have my big scans next week at the 2 year mark and will hopefully still be cancer free.  You are just at the beginning but it is a beginning to be grateful for... this support group was very helpful to me 2 years ago and I hope it can be for you as well.  If you need any advice or if you need to talk/vent/cry/laugh... feel free to look me up anytime!