new to list--kidney cancer outside kidney?

CT of my lungs for a chronic cough showed nothing on lungs, but a mass above the left kidney. An ultrasound of the kidney confirmed a tumor-like mass. However, unlike most of the posts I've been reading, it is entirely outside the kidney. "A 17 x 15 x 17 mm solid rounded mass is seen to extend from the upper pole of the left kidney. This does not meet the criteria of a simple cyst."

My doctor recommended that I see a urologist (and I have an appointment in a week and a half), but I'd feel more comfortable seeing someone who specializes in kidney cancer. I sent copies of the CT and ultrasound reports and some recent bloodwork to Memorial Sloan Kettering to see if I "qualify" to see a cancer doc. I have not yet had a CT of the kidney.

I don't have visible blood in the urine, no shooting pains, and no sudden weight loss or loss of appetite. However, I experienced some pain when the technician operated the ultrasound wand on my left kidney--like someone was pushing on a bruise. That general area of my back still is a bit sensitive (again like a bruise). I'm a non-smoker, non-drinker, somewhat overweight, age 49.

My questions:

--Has anyone had experience with a kidney cancer that is entirely outside the kidney such as described above?
--Is it a wise move to see a cancer specialist from the get-go?
-- Any advice to give me on questions to ask doctors, skills/experiences to look for in doctors, types of tests they will likely give me (or that I might ask about), etc.
--If I do have kidney cancer, is there any chance I'll live to a ripe old age and NOT die of kidney cancer (in my kidney or elsewhere in my body)? I have two 13-year-olds, and I want to see them grow up and meet my future grandkids. (Well, I don't want to meet those future grandkids any too soon--as I said, my kids are 13!)

Thanks!

Jill

 

I would see the urologist first and get the tests done before seeing an Oncologist. You have time to get the proper tests done to make sure of exactly what you are dealing with. I know you must be very worried as Kidney Cancer is a scary thing to deal with. . Many times there are no extreme signs like weight loss or blood in the urine to point to having cancer. .Since you have no signs of cancer having spread to other parts of the body, even if it is cancer they may be able  to remove it surgically. I would ask about an MRI of the brain if the Cat scan shows cancer.  Unfortunately being a non-smoker or non drinker or relatively young doesnt exempt people from getting Kidney cancer

Jill,

I was diagnosed with RCC in April of 2008.  In my case it was RCC and looked like RCC and I had a radical right nephrectomy.  Since I've had minimally invasive lung surgery called a VATS, to remove metasticized RCC growths from both my right an left lung.

I was on SUTENT for 7 cycles (28 on & 14 off) and ended that treatment in April leading up to lung surgeries.  With SUTENT all of my CT's showed a stable invironment and no major changes. 

Just last week a new CT showed more extensive growth.  I'm back on the SUTENT and am hopeful we caught it early enough to be treated.

MY RECOMENDATION...see an Oncologist no matter what!!!!

If at the very least it will be peace of mind.  Worst case, you'll get treatment.  My Oncologist told me just last week that in 2009 there hve been 3 new drugs introduced to address RCC. 

There's ALWAYS hope.  I have a 22 year old daughter and a 25 year old son.  I plan on being around long enough to play with Grandchildren!!!

Have faith, pray, and keep a positive attitude...those three things are the most important things I can tell you to do, outside of seeing an Oncologist.

 Good luck & God bless,

Doc

Jill,

My husband had a cyst/mass in the mid-pole of his left kidney. It grew from 3 cm to just over 4 cm. His urologist said he did not feel it was malignant & just wanted to continue to watch it. We decided to get a 2nd opinion from Emory in Atlanta. That urologist said it needed to come out no matter what so surgery was scheduled. Once they got in there, they found it was malignant and had to take out about 15% of his left kidney. He had great recovery and no chemo or radiation. He had no symptoms prior to the diagnosis. 2nd opinions can be a life-saver!

Good luck-

Liz

 

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Thank you for responding. I heard back from Memorial Sloan-Kettering and I have an appointment next week with a urologist who specializes in kidney cancer. I feel much more comfortable with this. Memorial Sloan-Kettering also has medical oncologists with particular expertise in kidney cancer. In the meantime, I'm still doing research so that I can ask informed questions. Any questions you wished you asked you first doctor? Thanks! Jill

Your Urologist and your Oncologist will become two of the most influential people in your life.  MAKE FRIENDS!

I was so overwhelmed at the time I didn't know what to ask, but they were so complete with their explanations that I felt completely informed.

 

Good luck...and God Bless!

 

Doc

Good for you in getting an Urologic Oncologist who specializes in RCC! Every case is different and every patient responds differently to treatment. Like you, my husband (who just turned 55) had none of the "normal" symptoms typically noted with RCC. His tumor was also outside of the kidney and was discovered after a serious of crazy events.

After his annual checkup, it was noted that his sugar was a little high. The doctor recommended diet/exercise however, even after losing 40 pounds in about 2 months, his sugar continued to go up and he became anemic. We started him on Iron supplements and meds for Type 2 Diabetes, then we both got the flu and were very sick for about 2 weeks. He developed a cough that wouldn't go away, lost about 30 more pounds, grew seriously anemic and had a nagging cough that wouldn't go away.

Because of a history of exposure to asbestos over 20 years ago, we asked the doctor to do a chest scan just to reassure us it wasn't lung cancer. The doctor agreed, and that is how they discovered the tumor on the kidney (already a massive 6 inches in diameter) along with about 6 tumors spread throughout both lungs.

Our wonderful doctors sprang into action, as we were literally in the fight for my husband's life. Within 6 weeks from diagnosis, the weight steadily fell off and the anemia grew worse, as did his sugar levels. He lost a total of about 100 pounds, had to be given 13 units of Blood, 6 units of Plasma and 15 units of Iron.

In the short span of only 6 weeks, the primary tumor on the kidney went from a 6 inch mass to the size of a football that weighed nearly 10 pounds! Also, the 6 small tumors in the lungs increased to 14 in number, with the orginal tumors increasing to about 1 1/2 inches in size. The tumor was spreading like wildfire!

After 2 rounds of Sutent, the tumor count in the lungs is back down to 6 and the largest of them measures only 5mm! He is now into his 4th round of Sutent and the next set of scans will be done after he completes this. We fully expect all tumors to be gone.

We thank God every day for the doctors He brought into our lives. The importance of a good doctor cannot be over-emphasized, nor can quick action to deal with the primary tumor...this is key to putting a stop to further spreading of this cancer.

I would also recommend a PET Scan, which can see things a CT Scan cannot see. Because of Insurance's Policies, the urologist cannot order the PET Scan, MRI of the brain (which none of the other scans show what's happening in the brain), Bone Scan, etc., so it is important to have an Oncologist. A Urologic Oncologist is definitely the way to go!

 

Thank you so much for your response. I hope your husband is still improving. Cancer is such a scary thing to contemplate, but I prefer action to denial!

Based on what I've read, I'm guessing the doc will want updated bloodwork and a CT with contrast of the kidney. You said a PET scan shows more than a CT--what about in comparison to a CT with contrast? I will ask him about the benefits of a PET scan if he does not prescribe one. 

My tumor is 1.7 cm in diameter, so I'm hoping it's very early stages. But I'm relieved to hear that people with larger tumors that have already spread are having success with the current treatments. 

One of my concerns is that if it does or has spread, symptoms of other pre-existing health issues (severe arthritis and chronic cough) may mask symptoms of mets to the lungs or bones.

 

Jill

 

 

On 9/19/2009 Jillskidney wrote:

CT of my lungs for a chronic cough showed nothing on lungs, but a mass above the left kidney. An ultrasound of the kidney confirmed a tumor-like mass. However, unlike most of the posts I've been reading, it is entirely outside the kidney. "A 17 x 15 x 17 mm solid rounded mass is seen to extend from the upper pole of the left kidney. This does not meet the criteria of a simple cyst."

My doctor recommended that I see a urologist (and I have an appointment in a week and a half), but I'd feel more comfortable seeing someone who specializes in kidney cancer. I sent copies of the CT and ultrasound reports and some recent bloodwork to Memorial Sloan Kettering to see if I "qualify" to see a cancer doc. I have not yet had a CT of the kidney.

I don't have visible blood in the urine, no shooting pains, and no sudden weight loss or loss of appetite. However, I experienced some pain when the technician operated the ultrasound wand on my left kidney--like someone was pushing on a bruise. That general area of my back still is a bit sensitive (again like a bruise). I'm a non-smoker, non-drinker, somewhat overweight, age 49.

My questions:

--Has anyone had experience with a kidney cancer that is entirely outside the kidney such as described above?
--Is it a wise move to see a cancer specialist from the get-go?
-- Any advice to give me on questions to ask doctors, skills/experiences to look for in doctors, types of tests they will likely give me (or that I might ask about), etc.
--If I do have kidney cancer, is there any chance I'll live to a ripe old age and NOT die of kidney cancer (in my kidney or elsewhere in my body)? I have two 13-year-olds, and I want to see them grow up and meet my future grandkids. (Well, I don't want to meet those future grandkids any too soon--as I said, my kids are 13!)

Thanks!

Jill

My husband's kidney cancer first presented itself as a mole on his cheek that bled when he shaved. That was February 2005. He had it removed and biopsied during his annual physical and found it was renal cancer cells that had spread from a tumor on his left kidney and also one on his left adrenal gland. He had both removed and went on IL2 for 6 weeks but could not tolerate it at all. Since there was no other evidence of cancer at that time, he stopped all medication and was cancer free until a tumor showed up on a scan done in June 2007, on his right adrenal gland. He started on Sutent the next month and in May 2008, they found another tumor in the apex of his lung. This month (Oct 2009), he became extremely sick and jaundiced, and the scan showed another tumor in his pancreas. He is supposed to start on Interferon and Avastin. We are dreading this because the Intereron is supposed to have side effects similar to the IL2, which about killed him.  I sure wish I knew more about how people tolerate this combination.

 PLEASE don't wait - see an oncologist right away. They can get you on the right medication for you. Time is of the essence. My husband is 57 and we have a 17 year old and a 15 year old, and I want him to live to see our grandchildren too. I'm praying that God will give the doctors the wisdom they need to cure you both.

God bless, and let me know how you're doing.

Hi Jill, I'm in the same boat as you as far as being 42 with a 13 & 11 y/o.

I agree with the others in reguards to PET scans but make sure it is a PET/CT scan. I had a tumour of similar size and 27 nodes up my aorta. I had a left radical rephrectomy and they removed all the cancerous nodes that showed up on the CT scan. This was in Sept 2008. In Octomber 09 a PET/CT scanner arrived in Brisbane and it showed up 7 tiny cancerous nodes in the same area as the last op. To get these now is a huge op again and the urologist is reluctanct to go after them and wishes we had the PET/CT a year ago but thems the breaks.

A GOOD naturapath can help you with the side effects of Sutent or Nexavar. Don't get one that is trying to cure you with magic potions, mine is an ex oncology nurse and to date (end of 8th cycle) I have had minimal side effects and am living an active and full life with my family (much to my cancers disgust)

A good book to read is by a bloke called Dr. Phillip Day. DON'T read or the conspiracy theroy books evryone will tell you to read, these are very negative and the last thing you need right now.

hope all goes well.

Tim