Recently Diagnosed Renal Mass...

ddantzler said:

The doctor called with the

The doctor called with the pathology results today. Clear cell renal cell carcinoma, 3.5 cm tumor (Stage 1). Fuhrman grade 2. He said that it was all contained within the kidney, and that the prognosis is very good. I will see him again on May 6th, and expect that I will get a letter clearing me to return to work and be told that I will have the standard interval CT scan follow-up procedure that most of you have.

I appreciate you all listening and wish you the best as you continue your struggle. It's been a whirlwind for me, hard to believe it's coming to a close soon!

It was caught early, you handled the situation sensibly and you're continuing to do so, so the outcome has been as good as you could have hoped for.  Prospects are excellent - you got over the bump in the road fine and now it's back to smooth travelling with careful, not rushed,  return to normal living with just the routine monitoring to see that all continues to be fine.  Congratulations!

Galrim said:

Thumbs up on the...

...good histology :-)

Now comes the hard part, you HAD cancer, you dont have it anymore. And getting that fact to really settle mentally is a challenge for most people, so dont freak out if the anxiety doesnt disappear right away.

 

/G

That's a point very well worth making - in the anti-climax after all the turmoil of the surgery and the initial stages of recovery, many patients find it surprisingly hard to settle down into 'normal' life again - it's not the same and it takes a bit of adjustment to accept the situation and learn to live with it in the happiest way possible. Many benefit from some counselling to strike the best possible new balance.

NanoSecond said:

Point of clarification

G,

Sorry but I have to point the following out and emphasize it emphatically.  All he now has is no visible evidence of disease (i.e. "NED") but that does not mean he "had" cancer or that he does not "have" it now.

Microscopic Dormant Tumor Cells (DTC's) can and do remain in the body.  But why some people later develop metastases from them and others do not is still a total mystery.

The point here is never to let one's guard down.

 

 

 

My point is not to let your guard down, absolutely not. But in terms of regaining a mental and physical full recovery; if you had nephrectomy as an intended curative solution, regarding yourself as "ex" is in my opinion an important step in the mental healing process. Otherwise you can quickly end up worrying about dormant rcc cells the rest of your life...

/G

ddantzler said:

The doctor called with the

The doctor called with the pathology results today. Clear cell renal cell carcinoma, 3.5 cm tumor (Stage 1). Fuhrman grade 2. He said that it was all contained within the kidney, and that the prognosis is very good. I will see him again on May 6th, and expect that I will get a letter clearing me to return to work and be told that I will have the standard interval CT scan follow-up procedure that most of you have.

I appreciate you all listening and wish you the best as you continue your struggle. It's been a whirlwind for me, hard to believe it's coming to a close soon!

Very glad to hear you are doing well in recovery and the prognosis is positive. One suggestion. Because I think you'll want to have it and refer to it over time, get a copy of your pathology report and scans, etc. Ask for copies or have them electronically scanned to you. Both work. Having them on hand makes asking the right questions so much easier.

Again congratulations.

Galrim said:

Thumbs up on the...

...good histology :-)

Now comes the hard part, you HAD cancer, you dont have it anymore. And getting that fact to really settle mentally is a challenge for most people, so dont freak out if the anxiety doesnt disappear right away.

 

/G

Had. Have. Had. Have. It's something I struggled with when I first saw my oncologist after the surgery that is following me and declared me NED. I don't like that term "NED". No evidence. It means as far as they can tell at this moment, you don't have it. It doesn't mean you don't have it anymore.

Unfortunately, until they find a way to test for it (no way now), we all have to act as if we have at least the possiblity of it coming back, because it can survive for years in the body. The good news is Stage 1, Grade 2, is about as good as it gets and the recurrence rates are less than 10%. You don't get a better prognosis with RCC. That's cause for a celebration.

It will have to be followed and considered for the rest of our lives. The highest risk for recurrence is in the first 2 years, but this type of cancer can come back many years later, and the probably doesn't go to 0 even after 10 or 20 years.

Maybe HAD a tumor and don't have it anymore. And that's great. Reducing tumor load is good. It means the body doesn't need to fight that battle, at least.

Because I'm Stage 3, and my recurrence rate is about 40-50%, I decided to take part in one of the drug trials. I'm in the Everest drug trial, which is trying to see if Everolimus might eliminate or delay RCC coming back.

I wish they could come up with a test that would show we are cured or not. That would be terrific.

Todd

NanoSecond said:

Worrying is not the response I had in mind

G,

I used to pretty much agree with your sentiments - before I delved rather deeply into the dynamics of cancer.  But now I respectfully disagree.  Here is why.

I too was extremely lucky in that my primary tumor was found to be fully encapsulated in my left kidney.  Admittedly it was much larger (11cm) which put me at greater risk for future metastasis.

Regardless, I paid no attention to that risk. When I was told that I was "cancer free" after surgery it came as such a relief I that I pretty much went right back to my old lifestyle and ignored some important early clues about paying close attention to proper diet and getting sufficient exercise.  [Now for some old-school oncologists these kinds of topics can still to be "safely" ignored.  But I think they are very mistaken and I believe that recent discoveries underscore this.]

After surgery I was then routinely subject to CT scans every 3 to 4 months.  For 2+ years I continued to receive reports that I was "NED".  But that all changed this past July when mets were discovered on my sacrum and left femur.  You can bet that got my immediate attention.

Since then I have learned quite a bit about what one might do to enhance either targeted or chemo therapies based on proper nutrition.  All of this is based on hard science and also by viewing cancer as primarily a "metabolic" disease - not just a "genomic" one.  So far I have had great success in this kind of approach.  I have been showing "dramatic" response to my treatment that uses a combination of Sutent plus Xgeva - while all the time I have not had any significant side effects to taking either of these drugs. 

Still, everything I now know I also know is far more effective for anyone "healthy" but trying to prevent getting cancer in the first place.  Furthermore, I have my own personal belief that, based on this, one can help minimize the possibility of developing any mets - and/or slowing their proliferation.

This is a very long-winded way of saying that I wish I knew back then - right after my surgery in May 2010 and before I eventually graduated into stage IV - what I know now.

 

I think the event of having diagnosed with cancer is a game changer for anyone. How it affects you is a very individual thing. From an overall perspective I dont disagree with your approach of being alert and changing any bad habits, be it food, smoking, drinking or whatever. But, that said, your reaction to it all depends pretty much on your mental condition and mental stamina. Some deal with it in a very proactive way. some drown in anxiety and fear, some completely ignore it and go into a kind of denial post-op.

My point is that disregarding which path you walk down afterwards, it will ALWAYS be a good starter to tell yourself:

I had it. Its gone ("visibly). How do I move on from here?

But, I think in a way we overall agree on this, our differences lies in the means not the goal.

/G (and guess we cant cook more soup on this goat) :-)

You Story is very much like mine, except that I had been ignoring a right sided pain for many years and thought if it hadn't killed me yet it wasn't going to. In Sept of 2011 I also had Hematuria while at work in a Hospital and was directed for imediat Ct which found a 12 cm tumor on my right Kidney. Renal Cancer is often found by accident or not at all until it is quite large.

Yes you should see a Urologist who specializes in Oncology. I did and had the surgery done after he had confirmed that he could have a vascular surgeon there as well. He elected to do open surgery just for that reason. He needed to make sure there was no vascular involvement. Having the extra expert there was vital.

If you can hook up with a Cancer Center in your area it would be good for you as well.