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First post--long wait for PET scan results

thaxter's picture
thaxter
Posts: 84
Joined: Jan 2014

After a couple of years of seeing my PCP for diabetes, weight loss, anemia, I finally got a CT scan in August of 2013 where a 10 cm tumor on my right kidney was found.  Also got a negative bone scan before surgery.  Radical nephrectomy on 9/13/13.  Recovery has been pretty good.  Went back to work after the govt shutdown ended and intended to retire at the end of December but I've decided to stay a little longer.  I will be 65 this year and have 42 years of federal service and my wife is also a fed who is eligible to retire.

So I've had no treatment in the four months post op.  Just a few visits to the urologist to get staples removed and an inital visit with the oncologist.  My diagnosis was stage IV with a non-contiguous tumor on my adrenal gland which was also removed.  Not sure what all this means.  The urologist said "cautiously optimistic" but when he called with the pathology report his voice let me know it was pretty serious.  The oncologist was not so rosy.  Got my first PET scan a week ago and they called a few days later to make a follow up appointment for 1/24.  I asked if the doc could call with results and she said she'd ask, but so far no call.  So I've got an 18-day wait after the scan and I'm trying not to be negative.

I'm feeling so much better than I have for years and have gained 40 lbs (I was 250 for many years and down to 165 by surgery and now 200).  But I went to the kidney cancer organization website and filled out the mortality calculator which says I have a median life expectancy of 3.5 years.  So I don't know what to think.

Darron's picture
Darron
Posts: 242
Joined: Jun 2013

Basically, from what you tell me, you are stage IV because the tumor spread to the adrenal gland they took out, but it wasn't one big tumor, it was two tumors. One in the kindney and one in the adrenal. Both have been removed.

yes, the 2nd tumor makes you stage IV, but the calculator you used is based on people from 5 years ago. The two drugs I have been on since my stage IV diagnosis in Oct 2012 didn't even exist 5 years ago. Click on my picture to the left of this post and read my bio. I have been on a drug trial since Feb. 2013 that eliminated a 3.8 cm tumor in my remaining adrenal gland. We are hopeful it is gone forever.

there are options, even if they see a met somewhere. Odds are that being stage IV, you will see a met at some point, but it doesn't mean the end is near! 

Write any and all questions down for your Dr appt. You will not remember all of them in the Dr office. write down the Dr. Responses, you will not remember clearly After the appt. Get copies of all reports and scans in case you want another opinion about what action should be taken.

sorry to welcome you to the club nobody wants to join, but you are not alone, and the odds you read are outdated.

hang in there and keep us posted. Ask any questions you want, send me a direct note.

Limelife50's picture
Limelife50
Posts: 420
Joined: Nov 2011

I had a tumor in both kidneys that might make me a stage 4 but wait i am closing in on 2 and a half years and my last scan came back clean so looks like 3 and a half years will be a slam dunk for me.Try to recover thaxter educate yourself about this disease but stay away from those stats

thaxter's picture
thaxter
Posts: 84
Joined: Jan 2014

I found one kidney cancer site that was not at all active, so this one is proving to be much much better.  I think I've learned more in reading posts today than I have in lots of web surfing. Thanks to everyone who participates for your knowledge and support.

I will try not to be a drive-by poster and I will definitely post my PET scan results when I get them in a few weeks.

a_oaklee
Posts: 177
Joined: Nov 2013

Waiting is very hard to do, and I think the best way of passing the time is to stay busy.  I think it's a good sign that you are feeling so much better, and that you have been able to gain back some weight.   Think positive that everything will be okay.  Try.

I found it interesting that you had a bone scan prior to your nephrectomy.  My husband also had scans done preoperatively.  His was a PET/CT.  On this site, it's not common (in my research thus far). 

I also want to share with you that we have never been given results of a scan prior to meeting with the doctor.  We always have to wait to see the doctor in person, and then we are given a copy.  Even when it was fantastic news, they made us wait. 

icemantoo's picture
icemantoo
Posts: 1658
Joined: Jan 2010

I tried that mortaliy calculator about a year ago. I am already 11 and 1/2 years out. My expectancy with the tumor at this point is a little longer than if I never had the tumor. Go figure. Maybe I can start a trend.

 

 

Icemantoo

NewDay's picture
NewDay
Posts: 182
Joined: May 2012

Welcome to our group, though I wish you didn't need to be here.  You will get a lot of infomation and support here.  I was wondering if you could share with us the grade and histology of your tumor.  Those also play a factor in prognosis, though I agree with the others, that you have to stay away from the stats on the web.  I found various monograms that say I have anywhere from a 20% to 75% chance of making 5 years so who knows which stats to believe.  

Take care and please do hang around.  It is a good group of caring folks here.

Kathy

thaxter's picture
thaxter
Posts: 84
Joined: Jan 2014

I am not sure how to read all of the pathology findings. Tumor was clear cell G4. The classification was IV, pT2a, pNx, pM1

Galrim's picture
Galrim
Posts: 278
Joined: Apr 2013

Hi Thaxter.

In short:

Clear cell is RCC type and the most common one, approx. 65-70% of all RCC patients have this type.

G4 is the Fuhrman grade which classifies the tumor on a cellular level. The grade describes to what extent the tumor cells differ from normal kidney cells. The scale is 1-4, the higher the number the more agressive are the cancer cells (sorry to be the one to reveal this for you, you should have gotten that information from your oncologist).

Stage IV  means that the primary tumor has metastizied and/or grown into adjacent organs or through the kidney capsule or a combination of several of these findings.

The PT2a refers to the size of the actual tumor.

pNx means that it is unknown if there is spreading to any regional lymph nodes.

pM1 means that there is metastatic disease (I assume thats due to your adrenal gland tumor, which also is why you are classified as stage IV, but Im not a doctor so you need to ask specifically about this).

You should under all circumstances ask your oncologist to walk you through all of this and what it means for your future treatment plans. Good luck and check in here if you have questions or just need to ventilate...

/G

 

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