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Disagreement with Dr over staging

dhs1963's picture
dhs1963
Posts: 368
Joined: May 2012

When I had my tumor out, the Path report said T1b, grade four (Sarcomitoid).  I saw the Dr westerday for followup.  He Still refers to is as stage 1, even tough there was a distant metastisis (to the lung).  This does not need right to me.  I asked, and he said, that even though the met may have been present at the surgery, the staging of my tumor does not change, and I have (not had) stage 1 cancer.  I said, that, by definition, I now have mRCC, which means, stage 4.  

Medically, this is a moot point, as he is not providing me with my primary cancer care (NIH is).  But, who is right?  I guess the disease might be mRCC, stage 4, but the tumor was stage 1....or are we debating the definition of is?

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

At dx and immediately post-nephrectomy, your 5.5 cm tumor made you pT1 and at N0M0 you were apparently stage 1.  If you now know that the lung lesion is an RCC met and if it were known for sure that it was present, however small, at time of op. then it seems entirely reasonable to say that you were pT1b N0 M1 and therefore stage 4.

Try putting it to your doc that the staging hasn't changed - it's corrected because the original staging has been shown to have been incorrect (even though it was the beast assumption at the time).

You can meet any argument that says that one can't play fast and loose with such staging, on account of desirability of consistency of data for research purposes, by pointing out that the Staging system itself is frequently changed and that the current (version 7) classification was published in 2009 and in effect since 2010.

foxhd's picture
foxhd
Posts: 1876
Joined: Oct 2011

As most surgeons tell their patient's," I got it all.", I was similarly diagnosed as stage 3. Nice and contained. But evidently in just a few months I had enough tumors to fill a stadium. I had to be stage 4 from the get go. And it must have been evident from early scans. Just not mentioned. I think we have had this discussion in the past about how each radiologist interprets and discribes the scans a little differently. One sees a tumor, one doesn't. In my case one radiologist mentioned a cardiac stent(which I don't have. And Alice mentioned someone whose Dr. described his ovaries.) I no longer worry too much about these things. I have cancer and tumors. That's all I need to know. I'm not gonna worry about the small stuff. Let me be pain free, let the drugs work, and whatever radiation and surgery can do to prolong my life . I don't want to think about prognosis calculators.

lbinmsp's picture
lbinmsp
Posts: 266
Joined: Jun 2006

HI - I guess my first question would be - was the lung met officially 'diagnosed' at the time of the nephrectomy (via biopsy)?  If it was not, then it may be entirely correct that it was defined as Stage I.  I am copying a link to an article from the American Cancer Society that speaks to the many questions and issues related to staging and grading.  it basically says that a person's original Stage never changes - but can be amended to document additional/new factors. Could be that the pathologist who did the original staging and grading may be using the 'letter of the law' type of determination - meaning that IF the lung tumor had NOT been diagnosed definitively - then yes, Stage I.  Another pathogist might go the other way.  I hope this didn't confuse the issue more - certainly not my intent.  Over the years I've had many questions related to staging and grading and have researched a great deal on the subject.  I found this article gave me the most clarity.

http://www.cancer.org/treatment/understandingyourdiagnosis/staging

 

 

 

dhs1963's picture
dhs1963
Posts: 368
Joined: May 2012

The way to look at it is at the time of removal, the tumor was T1b grade 4, based on size and extension.  Later information changed my diagnosis from RCC.  The pathologist had no way of knowning about the met, if it was present.  At the time, the best estimate was I had stage 1 RCC.    Now, we know I have mRCC, which is stage 4, grade 4.  It does not change anything for me, so it is a stupid place to argue. 

I think the disagreement came about when I refered to the tumor as stage 4, rather than the disease as stage 4.

Now my job is to be the person with a sarcomitoid tumor with mets that lives 30 years post diagnosis.  texaswedge might beat me by a few years though. 

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

and I will beat you to it, so long as I make the ton and I intend to. 

Glad yet another sRCC case has the right philosophy, viz

And if you should survive to a hundred and five
Look at all you'll derive out of bein' alive
And here is the best part, you have a head start
If you are among the very young at heart
dhs1963's picture
dhs1963
Posts: 368
Joined: May 2012

Right now, I am doing all of the things I always wanted to do.  So, I am cramming plans for many years into now...

 

I have bought a sports car (IMHO, a VW GTI is a sports car)

I am going to spring training (baseball)

I am going to opening day, sitting in the seats behind home plate

I am taking vacations (2 from met diagnosed to the end of march).

I have tickets to two baseball games in april (exculding opening day)

May is not planned, will wait till after my april scans.

 

And today, I am sitting home watching the snow flakes. 

 

By the way, Kurt Suzuki, Washington Nationals Catcher's father was diagnosed with mRCC in 2007.  He had a solitary met to the lung.  Kurt runs a charity for kidney disease.  He is still around.  Now, next week in Vierra, I need to get Kurt's Autograph.  I like hearing about people with mRCC that are doing ok. 

I would also like to hear about smRCC people doing well. 

 

 

 

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Well, here's one mnsRCC instance answering your call - feeling fine and doing well.

Good luck with the autograph and keep packing in all the fun you can, indefinitely!

AprilandChuck's picture
AprilandChuck
Posts: 95
Joined: Feb 2013

When my Husband had his Kidney removed the Tumor was stage 3... there were some places in his lungs they were watching but and its a big But.. he is an Auto Mechanic and had worked in Powdered Metal for years.. and he was a smoker( No longer.. Smoke free since July) So they were not certain if they were caused enviromentally Our Urology Oncoligist was sure he got it all... The Person who did the Biopsy on the removed Kidney was pretty sure they hadn't.. at the time I had zero knowledge on reading those reports.. Fortunatly for us.. we were already working with Secondary Oncoligists who did know what they were reading...and we went to 2 month scans(because of Rhabdoid features in his Clear Cell Cancer) instead of 3... that month can make a difference as we found out....The Staging and what not are still very confusing to me.. So here is how I look at it.. He has Stage 4 Cancer or what they call Metistatic Disease..We deal.. and I think you really need to see someone else if your Doctors is arguing.. His arguing sematics does not CHANGE what is happening with you now!! Our Secondary Oncologist had to wait till my Husbands Liver Biopsy to over say the Urological Oncologist...The plus is the Urologist is the one who had my Husband being seen by them both.. He got him involved with a Cancer Treatment Center(not Cancer Treatment Centers of America... Levine Cancer Institute) His thought was the more eyes on this the better... and Thank God for that!!

 

P.S. Husband points out having all the Doctors who see you on the same page becomes important if you have to file for Disability

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