New to Group

HPRonhovde

Just found this site and list.  I was diagnosed with RCC on 12/24/2012 though I felt I knew what all the tests were for a couple week before that.  I had NO symptoms except for being cronicly dead tired.  My pulmonologist asked for a chest XRay along with other work on my sleep apnea when they spotted a something on my left kidney.  Two CT Scans, one with contrast, and a PET Scan later they confirmed Stage 3 kidney cancer.  The surgeon was originally going to only remove have the kidney since it appeared on the scans to be limited to the bottom half but once he got into it he had to remove the whole thing because the cancer and spread more than expected.  They also found another type of cancer in the fatty tissue under the kidney and removed that and three lymph nodes for testing.

I spent 5 days in the hospital and have been home ever since.  It has just been 4 weeks since surgery and even though they feel they got it all I have a long road ahead.  One thing I do know is that I feel better that the surgery was open, a 8 - 10 inch cut across my abdomen.  I feel that taking the kidney out in one piece rather than little slices with vacuum has a much better chance of not spreading the bad cells around to other parts of my body.  The one very minor negative I have experienced is constant nausea.  Nothing bad, no vomiting, just a constant upset stomach.  I'm eating well and the surgeon gave me some med for post surgery nausea that I'm not sure are helping much. 

I am scheduled for my first CT scan after surgery next Friday and then they will figure out what the radiation treatments will be.

I have learned more in the past few weeks about a subject that I never expected to know anything about but I guess that is a good thing also. 

 

Ron

alice124

New to site

Let me reluctantly say Welcome and wish you the best as you wage your war against kidney cancer.

So if I read your post correctly, your doctor plans to use radiation to treat the cancer. I'm still learning too and know there's much more that I don't know that I do about this disease. But I'm curious as to why your doctor plans to begin treatment with radiation and not an oral medication such as Votrient, Sutent, or one of the many others? Was that mentioned?

Whatever treatment, we're here for support. So keep us posted.

HPRonhovde

alice124 said:

New to site

Let me reluctantly say Welcome and wish you the best as you wage your war against kidney cancer.

So if I read your post correctly, your doctor plans to use radiation to treat the cancer. I'm still learning too and know there's much more that I don't know that I do about this disease. But I'm curious as to why your doctor plans to begin treatment with radiation and not an oral medication such as Votrient, Sutent, or one of the many others? Was that mentioned?

Whatever treatment, we're here for support. So keep us posted.

Hi Alice

Hi Alice and thanks for your reply.  When I go to the radiation oncologist this friday I will have to ask what the 2nd type of cancer was.  I am going through radiation to treat the 2nd cancer and to hopefully kill any microscopic cells that might be left from the kidney.  I have noticed in posts that there seems multiple types of RCC.  My Dr's have not said what type or grade either of my cancers were.  I will have to ask if for no other reason than to feel better informed.  All the research I did prior to surgery only covered the subject in general.  Now I know what I will learn new on friday.

Best wishes and Thanks,

 

Ron

 

Texas_wedge

HPRonhovde said:

Hi Alice

Hi Alice and thanks for your reply.  When I go to the radiation oncologist this friday I will have to ask what the 2nd type of cancer was.  I am going through radiation to treat the 2nd cancer and to hopefully kill any microscopic cells that might be left from the kidney.  I have noticed in posts that there seems multiple types of RCC.  My Dr's have not said what type or grade either of my cancers were.  I will have to ask if for no other reason than to feel better informed.  All the research I did prior to surgery only covered the subject in general.  Now I know what I will learn new on friday.

Best wishes and Thanks,

 

Ron

 

Questions to ask on Friday

Ron, your primary tumor was Stage 3 and other questions you'll want to ask should include the Grade (1 - 4) the sub-type (probably it will be clear cell, since this is far the commonest) whether there was necrosis (tissue that was already dead) and if they detected any sarcomatoid change.

HPRonhovde

Texas_wedge said:

Questions to ask on Friday

Ron, your primary tumor was Stage 3 and other questions you'll want to ask should include the Grade (1 - 4) the sub-type (probably it will be clear cell, since this is far the commonest) whether there was necrosis (tissue that was already dead) and if they detected any sarcomatoid change.

Thanks for the suggestions

Thanks,  I'm in that position where I don't enough to know what questions to ask.  I'll print your suggestions off and have them ready.

 

Ron

Robin_Martinez

HPRonhovde said:

Thanks for the suggestions

Thanks,  I'm in that position where I don't enough to know what questions to ask.  I'll print your suggestions off and have them ready.

 

Ron

Radiating Ron's other cancer

Ron, I would call now and find out all you can about this other cancer that showed up. What kind of cancer, what stage, what type, what grade, what size, anything at all the doctor can tell you. Ask why radiation is the treatment choice, and what is left to be radiated? Then start "doing your homework" on this new cancer to find out if the recommendation makes sense to you. 

Too many people just do what the doctor tells them. Later on they find out their doctor was not up-to-date or not aggressive enough or made a choice of a treatment option without informing the patient there was a choice. You don't want to find out things like that after the treatment has already been carried out. 

You have a right not to go into treatment uninformed. I've learned not to unless it is a life-saving emergency procedure.

alice124

HPRonhovde said:

Thanks for the suggestions

Thanks,  I'm in that position where I don't enough to know what questions to ask.  I'll print your suggestions off and have them ready.

 

Ron

Suggestions

Ron,

I'm glad Robin chimed in on the radiation.  Robin is one of the resident experts on the Kidney Acor and I'm glad she picked up on your post. I was reluctant to question the radiation you mentioned but feel better that Robin has same concerns. You can't go wrong with advice from her and Tex. Good luck.

Texas_wedge

alice124 said:

Suggestions

Ron,

I'm glad Robin chimed in on the radiation.  Robin is one of the resident experts on the Kidney Acor and I'm glad she picked up on your post. I was reluctant to question the radiation you mentioned but feel better that Robin has same concerns. You can't go wrong with advice from her and Tex. Good luck.

Information

Alice, I hope no-one is misled by your observation.  As you should know by now, I sit at Robin's feet.  I do my best (as a patient and comparative newcomer to RCC) to be supportive and share some snippets of info I've picked up whereas Robin has, both professionally, as a caregiver and by many, many years of immersion in this subject, got an encyclopaedic knowledge and also has, in my view, unerring judgment. 

You're right in saying that anyone would be unlikely to go wrong by heeding her advice.  As I said a little time ago, I hope she can find time to bring her wisdom to these threads, at least occasionally.