Incidential Finding on CT Scan - 8.4 cm Left Kidney Tumor

Dont worry to much
We were diagnosed 8/7 and we did not have kidney out until 11/16. In fact by waiting the sutent had reduced it from 6 cm to 5.5 in 5 weeks. Its a slow grower and you have gone this long a few weeks is not that important in the grand scheme of RCC. Not trying to trivialize... but breath... it is a waiting game.

Gail mother of Cody 21
diagnosis 8/10/11 unclassified RCC T1B N0 M1 TFE3 negative
8/16 checked into NYU as emergency surgeon concerned head skull tumor was closing ventricle to brain
8/17 embolization via femoral artery to bone lesion on skull 7 hours
8/18 repeat
8/19 10.5 hour surgery to remove skull mass (about 45% right skull)
8/20 began a vegan(from an animal product standpoint) gluten free low glycemic diet; no casein but we do eat ocean caught fish and org chicken; org green drink every day
9/4 titanium skull inserted
9/29 begin sutent 25mg 2 weeks on one week off; then 37.5 2 weeks on 1 week off; then 50mg for 3 weeks then off 5 days (preop tests show 3 tiny liver lesions shrinking) Also Xgeva injection. No lymph,lung or brain involvement
11/16 full neph of lft kidney 5.5 tumor (started at 6cm but sutent was working!!) Still unclassified 
12/1 begin sutent again at 37.5 to work into it
12/8 sutent to 50mg for a week then off a week and continue cycle of 50 2 weeks on 1 week off until next scans (due in late Feb)
12/12 began radiation of remaining skull mets Monday and Thursday for 3 weeks high dose (already noted necrosis of tumor after one dose)
12/31 completed high dose radiation of skull mets
1/10 rescans stability and continued remission; no new evidence of disease since initial diagnosis first week of August 2011
1/13 Dr. Dutcher confirmed what we thought to be true on 1/10; remaining on Sutent 50 mg 2/1 week cycle
1/14 We have stable disease with less conspicuous liver tumors (3) largest is 1.1 cm. This represents improving metastatic disease. Don’t know why they just don’t say they are shrinking and necrosis is setting in but Dr. Dutcher does not. We are almost to NED and Sutent seems to be working marvelously. Hopefully we will get a long run from it. Cody will be returning to college Monday 1/16 and back to his life.
When he returns in May we have to consider HDIL2 or not, wait for PD1 which has far less side affects and rave response rate, or just remain stable w remission on Sutent.

myboys2 said:

Dont worry to much
We were diagnosed 8/7 and we did not have kidney out until 11/16. In fact by waiting the sutent had reduced it from 6 cm to 5.5 in 5 weeks. Its a slow grower and you have gone this long a few weeks is not that important in the grand scheme of RCC. Not trying to trivialize... but breath... it is a waiting game.

Gail mother of Cody 21
diagnosis 8/10/11 unclassified RCC T1B N0 M1 TFE3 negative
8/16 checked into NYU as emergency surgeon concerned head skull tumor was closing ventricle to brain
8/17 embolization via femoral artery to bone lesion on skull 7 hours
8/18 repeat
8/19 10.5 hour surgery to remove skull mass (about 45% right skull)
8/20 began a vegan(from an animal product standpoint) gluten free low glycemic diet; no casein but we do eat ocean caught fish and org chicken; org green drink every day
9/4 titanium skull inserted
9/29 begin sutent 25mg 2 weeks on one week off; then 37.5 2 weeks on 1 week off; then 50mg for 3 weeks then off 5 days (preop tests show 3 tiny liver lesions shrinking) Also Xgeva injection. No lymph,lung or brain involvement
11/16 full neph of lft kidney 5.5 tumor (started at 6cm but sutent was working!!) Still unclassified 
12/1 begin sutent again at 37.5 to work into it
12/8 sutent to 50mg for a week then off a week and continue cycle of 50 2 weeks on 1 week off until next scans (due in late Feb)
12/12 began radiation of remaining skull mets Monday and Thursday for 3 weeks high dose (already noted necrosis of tumor after one dose)
12/31 completed high dose radiation of skull mets
1/10 rescans stability and continued remission; no new evidence of disease since initial diagnosis first week of August 2011
1/13 Dr. Dutcher confirmed what we thought to be true on 1/10; remaining on Sutent 50 mg 2/1 week cycle
1/14 We have stable disease with less conspicuous liver tumors (3) largest is 1.1 cm. This represents improving metastatic disease. Don’t know why they just don’t say they are shrinking and necrosis is setting in but Dr. Dutcher does not. We are almost to NED and Sutent seems to be working marvelously. Hopefully we will get a long run from it. Cody will be returning to college Monday 1/16 and back to his life.
When he returns in May we have to consider HDIL2 or not, wait for PD1 which has far less side affects and rave response rate, or just remain stable w remission on Sutent.

pain
Welcome...I think. Wish you weren't here. Anyway if one of your questions is ,"if you could feel pain," let me tell you yes. My diagnosis was due to pain and blood in my urine. All in one night. Despite excellent health and fitness, my pain became unbearable in only 24 hours or so. Had been to ER. Pain worsened. Returned to ER next night afraid I might die. Was admitted because the tumor had occluded the renal vein causing all the pain. My advice is to push for surgical consult. If you have a decent insurance company, call them and get a case manager involved. Good Luck!
FLY! Fox loves ya!

SushiSharon said:

Thank You, Lisa
Thank you Lisa, for your kind words as well. I have been reading your story, and I'm glad to know you have good news! Funny thing is, now that I've been rehydrated in the hospital, my tissues are "juicy", and I have have a horribla "catch" in my left side up inderneath my ribs and around to the back. Could you feel any pain?

Hugs back, and keep in touch

Blessings,
Sharon

No Pain
Hi Sharon,

First off, I just have to say I love sushi! lol My son got me on to it about 2 years ago and I could eat it every day. Yum!

As to the pain, I didn't have any, but my tumor was small. They found mine on a CT Scan for an attack of diverticulitis. (Divine intervention they said and I believe it!) I am keeping you in my prayers and will be following your posts. Take care.

Blessings,
Lisa