The Best Kidney Cancer Treatment Institution in the United States?

The best for our kind of cancer is supposed to be the Cleveland Clinic. But you cannot go wrong with the classics either, like Sloan-Kettering, Mayo Clinic, etc.

Your mom's mass sounds like mine was -- unclassifiable on the CT scan. Turns out that mine was cancer after all (only sure after it was removed). That doesn't mean that your mom's is though. Cleveland Clinic is heading the study right now to be able to better classify these things in the future.

rcabanas said:

Chicago,

Thanks for replying and thank you for the information. I'll have to look up the phone numbers for those clinics, Cleveland being at the top of my list.

Yeah. All the doctor at UCLA could say was that it wasn't quite a completely fluid filled mass (benign), yet it wasn't quite a solid mass (malignant), so you're stuck. My mom had already had a CT scan done and took the films with her to this urologoist at UCLA, but he wanted her to schedule to do another one down there. He said that they have a slightly different way of doing the CT scan where it's "faster" and gives a clearer picture, so he might be able to give her a better diagnosis, one way or the other. I was doing some research and found that there has been a "recent" improvement in CT scanning called "helical scanning" that it says is basically a "rapid CT scan". This may be what he was talking about.

I was trying to do some information on whether or not an MRI would be better to do at this point because it might give a different look at the mass. I can't seem to find clear documentation on whether or not an MRI would be just as good, or beneficial, to use. All I know is that my mom would rather have an MRI done than a CT scan (if they give just as much insight) because in her studies she found that a CT scan is equivalent to around 100 chest x-rays and she wants to keep her CT scans down to a minimum if she can.

Well, thanks again for your help. And if you have any additional information that you'd be willing to share (about MRIs, you're experience, etc.) I would love to hear it and would greatly appreciate it. Thanks.

Ryan Cabanas

Hey Ryan,

That mass sounds more and more like mine was. Much more than just fluid, but not clearly showing up as cancer. Turned out mine was cancer though.

Can't tell you much about CT scans or MRIs that you probably don't already know. I only know that I had several, and none were conclusive. My surgeon (Cleveland Clinic trained) gave me about a 20% chance it was cancer. Those odds were high enough for me to opt for the surgery. Good thing I did.

There's supposed to be a 1-4 point scale that these masses are rated against (I forget the name of the doctor the scale is named after). 1 is usually just a fluid cyst. 2 is supposed to be a more complex cyst, but not cancerous. 3 and 4 are supposed to designate cancer. Mine kept showing up as a 2 for one part of the scan, but a 3 for the other. It sounds like your mom may be experiencing something similar.

Cleveland Clinic is currently doing a long-term study on masses found, and how the scale rates them. My results were unusual enough that I became part of the study. They may be willing to treat your mom for the same reason.

The options I was given were to have the mass removed surgically, or to continue to monitor it regularly. I figured that I was better off going for the surgery while I was still young (35) and healthy. Turned out to be the right choice.

If you get the surgery, depending on the location of the mass, you will probably have the choice of removing the whole kidney, or just a part (partial nephrectomy). Removal of the whole kidney is ironically the simpler operation of the two, and the recovery is twice as fast, that is, if you have it done laproscopically. Of course, the downside is that you lose the whole kidney. I believe that the Cleveland Clinic is one of the only places regularly performing the partial nephrectomy laproscopically. Most places just have to experience with that procedure, however.

I had a non-laproscopic partial, and the recovery was not pleasant. But at least I still have two working kidneys. For now, anyway. Another study shows that people who get kidney cancer young are much more likely than anyone else to get it again. Another good reason to keep as much of your kidneys as you can.

rcabanas said:

Chicago,

Thanks again so much for writing back. It's been truly helpful to meet someone else who's had kidney cancer and who's willing to share their experiences and information. I've shared your responses with my mom and she says, "Thank you" as well.

My mom was wondering which kidney you had surgery on and how long your stay in the hospital was and your recovery time. Also, how big was your tumor? What kind of RCC did you have...clear cell?

You also had said that your surgeon was Cleveland Clinic trained. But you didn't actually go to the Cleveland Clinic to have your surgery? I think we might actually look into possibly making an appointment to see Andrew Novick at The Cleveland Clinic.

Thanks again for writing back.

Ryan

p.s. - Would it be okay if I emailed you directly sometime? (I like the discussion board here, too though, because other people get to benefit from the info as well, but I know some stuff can be personal. Thanks.)

Hey Ryan,

You're right. I've sent a more detailed reply to your personal CSN email.

Dee356 said:

Hi, there is hope out there and I wanted to make sure you heard my story, too I had my right Kidney removed 4 years ago. I am currently going to MD Anderson in Texas to have my right adreanal gland removed. I figure surgery every four years is worth it if it means I continue to live. It is more likely I am more your Mom's age (58). There is a super book out written by Larry Burkett about his experience with Kidney Cancer called Hope When it Hurts. He fought it for 10 years and then died of a heart attack! God Bless!

Was the andrenal gland involved at any of the previous studies during the last 4 years? At which point was the andrenal gland mass discovered? What kind of mass was in teh kidney (size, stage). Interested in the answer as your age group & nephrectomy is similar to my aunt's.

Thank you.

HeatherHa said:

Can you email me?
Hi,
I saw your post. We need a surgeon in the US. We are looking for the best in the US. We are coming from overseas. Can I contact you directly or you cantct me, to ask a few questions regarding a surgeon for laparascopic (if possible) partical nephrectomy?

I had a radical in 2006 that had already mets to the liver. Dr. Mitchell Sokoloff is a urologic oncologic surgeon, and very specialized. At the time I saw and worked with him in 2006, and 2007 for a node recurrence, he was at Oregon Health Sciences University. He is now practicing and teaching at the University of Arizona med school in Tucson, AZ. Very good at explaining what is happening, easy to talk to, etc. Also was not hesitant to bring in the other surgical speciallists for my upper adbominal surgery on the liver and gall bladder.
You can do a web search by his name or the UofA.
I wouldn't want to have to go back for medical reasons, but I'd like to be able to tell him that I beat the 5-7 month survival diagnosis I was given in 2006.

Good luck on your search.
Donna