Incidential Finding on CT Scan - 8.4 cm Left Kidney Tumor

SushiSharon

I was admitted through the ER for pancreatitis (thought it was the stomach flu), and the CT scan showed a baseball-sized left kidney tumor, which they say looks like cancer (99%). The plan is to have my left kidney removed via laparoscopy in a few weeks. My concern is the wait. It is right up to the spleen. Any similar stories out there? I am a healthy 43 year old female, who just might have to cut back on sushi...

rae_rae

Slow growing
You will find many similar stories here. Waiting is agonizing, yes, but not uncommon. My diagnosis was July 15, 2010. My surgery was October 8, 2010. My tumor was about the same size and location as yours (butting up against spleen and pancreas). I didn't like the long wait my first surgeon put me through (wait for appointments, wait because the surgery scheduler was on VACATION, wait for this and for that) so I ended up getting a second opinion in September and found a different surgeon, who scheduled me within two weeks. It was an agonizing three months for me.

I had another complication that dragged my wait out, which was an ovarian mass. I was told by surgeon 1 to go to my OB/GYN in my hometown, which was a ten day wait, only to be told I should see an oncologist OB/GYN in the city where my surgery was being scheduled, which was another two week wait. During this process, I am quite sure I became quite unpleasant to deal with but I found unless I became demanding and made frequent calls, no one was going to speed up my process.

The good news is that KC is slow growing so it's not uncommon to wait. If you are not comfortable, seek a second opinion. You should anyway. You will find a wealth of support and information at this forum. Stay with us and keep us posted.

Best Wishes,
Rae

SushiSharon

rae_rae said:

Slow growing
You will find many similar stories here. Waiting is agonizing, yes, but not uncommon. My diagnosis was July 15, 2010. My surgery was October 8, 2010. My tumor was about the same size and location as yours (butting up against spleen and pancreas). I didn't like the long wait my first surgeon put me through (wait for appointments, wait because the surgery scheduler was on VACATION, wait for this and for that) so I ended up getting a second opinion in September and found a different surgeon, who scheduled me within two weeks. It was an agonizing three months for me.

I had another complication that dragged my wait out, which was an ovarian mass. I was told by surgeon 1 to go to my OB/GYN in my hometown, which was a ten day wait, only to be told I should see an oncologist OB/GYN in the city where my surgery was being scheduled, which was another two week wait. During this process, I am quite sure I became quite unpleasant to deal with but I found unless I became demanding and made frequent calls, no one was going to speed up my process.

The good news is that KC is slow growing so it's not uncommon to wait. If you are not comfortable, seek a second opinion. You should anyway. You will find a wealth of support and information at this forum. Stay with us and keep us posted.

Best Wishes,
Rae

Thank you, Rae
Thank you, Rae for your encouragement and kind words. I will be persistent, to say the least! Blessings,

Sharon

LISAinTN

HI
Hi Sharon,

I'm sorry you had to join our "club". I don't have much to add, but just wanted to say you are in my prayers. The waiting is the worst, but you will come through this. Hugs to you.

Blessings,
Lisa

myboys2

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.

SushiSharon

LISAinTN said:

HI
Hi Sharon,

I'm sorry you had to join our "club". I don't have much to add, but just wanted to say you are in my prayers. The waiting is the worst, but you will come through this. Hugs to you.

Blessings,
Lisa

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

foxhd

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

foxhd said:

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!

Surgical Consult
Hello Foxhd. My surgical consult is tomorrow. I have a bit of a "catch" in my flank side around to my back. It's nothing like the pancreatitis pain I had, which took me to the ER (and I'm so thankful it did!). The more hydrated I am, the more intense the "catch" is. What grade was yours considered if it occluded the renal vein?

Sharon

LISAinTN

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

foxhd

SushiSharon said:

Surgical Consult
Hello Foxhd. My surgical consult is tomorrow. I have a bit of a "catch" in my flank side around to my back. It's nothing like the pancreatitis pain I had, which took me to the ER (and I'm so thankful it did!). The more hydrated I am, the more intense the "catch" is. What grade was yours considered if it occluded the renal vein?

Sharon

grade
It was a stage 3 tumor with only 1 lymph node involvement. However in a short 6 month span it was stage 4 with 8-10 lung mets and a couple in the liver. Means that they were always there just to small to see on early scans.Furhman 3 I believe.