Feel Like I am Going Crazy

stub1969

Right side

My tumor was growing on the lower pole of my right kidney--but still encapsulated within the kidney.  The encapsulation part is the most important.  This means it hasn't come out of the kidney lining and grown into other organs.  I'm surprised the doctor said this especially since you had the CT with contrast.  They would surely see any type of metastic activity in the liver with this type of scan.  The surgical team where I am being cared for (Mayo in Rochester, Mn) didn't mention anything like your doctor did in my pre-op scans.  They told me that it appeared to be contained and that pathology would confirm it after it was taken out.  Since your doctor said that the scans were clear, I'd breathe a sigh of relief and focus on the positive.  It appears that surgery should take care of this for your husband.

Just a quick reminder for you--we've all been where you are and we all remember the emotions that we felt.  Your questions and reaction to the diagnosis is absolutely normal.  Please ask any and all questions that you have.  We're here to help.

Keep us posted.

Stub

todd121

Pandabear1011 said:

Hi Sandy, I was diagnosed

Hi Sandy, I was diagnosed with a 6cm X 4.5cm X 3.5cm grade 2 kidney tumor back in May 2014. I had my right kidney removed at MD Anderson here in Texas. My doctor said my prognosis was excellent and so far so good! Its been almost 3 years and no recurrence. A 6cm tumor is considered Stage 1.

Staging - Wait for Pathology

A 6 cm tumor that hasn't grown outside the kidney in any way NOR grown into any of the veins or arteries in the kidney is Stage 1 (in other words, fully contained). Also, it assumes no other tumors anywhere in the body (it's the only tumor).

You don't really know the stage until 1) that tumor has been to pathology so they can stage it and 2) you've had thorough workup to make sure no other tumors are present. This workup should include a CT with contrast if possible of the chest/abdomen and pelvis, and possibly a nuclear bone scan and a brain MRI. This is what they do when you go into a drug trial to make sure of your staging.

Also, the stage is not the only information that is important. Very important is the type of RCC and what grade it is. You don't know this until after pathology either.

I keep posting about this, because I was completely shocked when I was told I was Stage 1, and I came on here and everybody (inlcluding my surgeon) said I was probably cured only to find out that I was Stage 3, Grade 3 and had a very high probability of it returning.

Given all of this, remember that a prognosis is not really helpful information. Nobody can tell you what will happen to you. There's no glass ball for reading the future. So try not to worry about it too much.

Best wishes,

Todd

todd121

sandy23 said:

I have so many questions

I can't tell you how much I appreciate everything you guys have said.  Just the fact that you took so much time to type your responses means the world.  Thank you.

Do any of you know about blood in the urine?  My husband has that and I read that means that it is already in the advanced stages and prognosis is not good.  I'm sorry to be so personal but did any of you have that?

Blood In Urine

I've never heard that that has anything to do with "advanced stages" of RCC. It is a symptom. There are other types of cancer that cause this and many are very treatable. There are even other types of cancer in the kidney that cause this and some are very treatable.

So don't take that to mean anything scary.

Todd

Bay Area Guy

sandy23 said:

We are back from his

We are back from his appointment and the chest x-ray was clear and so was the CT scan with contrast.  He did say that since it is on the right side though, that it isn't possible to see in between the liver and kidney but he doesn't anticipate it being in the liver (now I am worried that it is there and they just can't see it).  The cystoscopy was clear and looked good.  He will have his first appointment with the doctor actually doing the surgery on February 2nd and surgery will be scheduled at that time.

I am probably going to really need you guys a lot during that time.  If I become annoying, just tell me.

My tumor was also on the

My tumor was also on the right side, but much, much smaller than any of the ones mentioned by others (1.5cm at diagnosis, 1.7-1.8 cm on removal).  All of my CT's (and I think I had a total of 5 over the 30 months between diagnosis and removal) were able to see the liver just fine and no other part of my abdomen had anything odd other than my intestines, which had the evidence of two previous non-cancer related surgeries.  A chest x-ray from one month ago, which was six months post-surgery, showed nothing unusual.

Footstomper

sandy23 said:

Thank you icemantoo

This forum is the first bright spot that I have found.  The last few days have been filled with non-stop google searches and those are terrifying.

 

Dr Google

Dr Google is not your friend. STOP LOOKING. Stop looking NOW! Cancer research is proceeding so fast everything on google/yahoo is out of date, stressful and depressing. If its not out of date its just downright crazy: Lizards, leeches and snake oil.

This is a good site. Another good site, of a more technical bent, is Smart patients. As for the rest, leave Dr Google to the Lizard people!

Footstomper

sandy23 said:

I have so many questions

I can't tell you how much I appreciate everything you guys have said.  Just the fact that you took so much time to type your responses means the world.  Thank you.

Do any of you know about blood in the urine?  My husband has that and I read that means that it is already in the advanced stages and prognosis is not good.  I'm sorry to be so personal but did any of you have that?

Blood in Urine

Means that you've got blood in your urine. It means many things Gallstones, cancer. For me it was cancer on May1st 2013. It is no indicator of anything apart from something wrong somewhere. It is no indicator of stage or progress in cancer.

Stop consulting Dr Google! He is either out of date or crazy. Perhaps Lizard monsters are taking over out innards, but I doubt it.

Everyone is giving such good advice that I doubt I can add any. Try not to panic. Your imagination will imagine the worst. Be aware that that is what is happening. I have never met a cancer patient who found that the reality lived up to their imaginings, so try not to panic.

Steve.Adam

icemantoo said:

The cystoscopy

sandy,

 

The cystoscopy is to rule out bladder cancer. None of us guys has fond memories of it. It is a routine test.

 

Icemantoo

Were you awake?

Did they knock you out for that?

My 'telescope' procedure was a pyeloscopy and I was pleasantly unconscious while it was happening.  It still stung for a couple of days afterwards, though.

Steve.