New To Rcc And Need Hope

My dad was told he may have RCC. I am anxiously awaiting the results from a biopsy of his right pelvis.  The tumor in his left kidney is 3.5 cm.  The last specialist we saw said that it may in fact not be metastatic as the second suspicious mass may not be related to the tumor in his kidney.. Im hopeful of this as I would think that they can just remove the small tumor if its not metestatic. 

Can anyone provide feedback on either:  1- Do you know if small tumors normally spread where the secondary site is double the size of the first?

2- Is it possible to control metestatic RCC if only 2 tumors are found initially..? 

Anything would be helpful.. thanks.

Laura

Laura,

I know you are worried but there are lots of new treatments for this kidney cancer and the fact that your dad's primary tumor is small is very hopeful.  Hopefully the other problem isn't a met but if it is there is still lots of hope for him.  You are on the right site for info...and your should research treatments and get good info.  

I am still here after almost five years and still am fighting hard.  So hang in there and get all the info you can but just remember the good news is that his is a small tumor and that is great news for there being no recurrence once they remove it.  

Take care

Chris in Marion, AR 

I am a six-year survivor of kidney cancer and a leader of a New York-based support group.

It's not likely, but possible, that the second mass is metastatic rcc. The best treatment for this mass is also surgery, if it is possible to do it. Otherwise, there are a number of systemic treatments.  It's best to go to an oncologist who is a kidney cancer expert, as not every oncologist is familiar with rcc.

I would suggest going to www.ACOR.org, and choosing the option for kidney-onc. This is an excellent support list.

 

Good luck,

 

 

On 12/26/2007 LuvMyDad07 wrote:

My dad was told he may have RCC. I am anxiously awaiting the results from a biopsy of his right pelvis.  The tumor in his left kidney is 3.5 cm.  The last specialist we saw said that it may in fact not be metastatic as the second suspicious mass may not be related to the tumor in his kidney.. Im hopeful of this as I would think that they can just remove the small tumor if its not metestatic. 

Can anyone provide feedback on either:  1- Do you know if small tumors normally spread where the secondary site is double the size of the first?

2- Is it possible to control metestatic RCC if only 2 tumors are found initially..? 

Anything would be helpful.. thanks.

Laura

 

I am a six-year survivor of kidney cancer and the leader of a New York based support group.

It is not likely, but possible that the second tumor is metastatic rcc. All sorts of quirky things happen. The best way to treat the second tumor is also surgery, though of course it depends if it is possible.

If this is a rcc met, you need a kidney cancer expert. Not every oncologist is knowledgable about kidney cancer.

I have had RCC for 2.5 yrs now, had surg 2 yrs ago that removed my L Kidney, I am stage 4 with mets in both lungs and my L4 vertabrae, I have taken all the new RCC drugs one after another, and now am back on Nexavar after almost a year off of it, after it stopped working for me after 10 mo's on,  it was the only one that did work for me, no one has tried it a 2nd time that I know of, so we shall see, what we shall see in March after my next Cat scan...I have read everything that is known about RCC, so I can talk to my oncologest about it like another doctor would, I think this has helped me live longer, as most oncol docs only have a general idea about RCC, because it is some- what a rare cancer...I do not feel as well as I did a year ago, thats for sure, even though no one has fought harder, its still chipping away at my life and I have run through all the treatments except forr IL2. I have lost about 35 lbs in 2 years and stuggle to maintain a stable wieght for the last few months....Everyone that has known me for a long time has said that I do not look sick and still look younger then my 62 yrs, but make no mistake about it, this is one tough fight and it will take everything youv't got to beat it...Happy New Year and I wish you good luck with your battle...Mel...Reno,nv

Hi Laura,

 

I don't know the answer to your first question but my dad was diagnosed with kidney cancer in 1994.  He had the kidney removed and no sign of it until 10 years later.  In 2004 he had surgery to remove nodules in his lung. Last Christmas 2006 tumors were found at L5-S1 and his remaining kidney. He had spine surgery to remove a tumor in his back in the spring and a freezing procedure to the tumor in his kidney.  He is now taking Sutent and his remaining kidney appear to be smaller on his most recent CAT scan.  There is hope and it is treatable.  The cancer may be slow growing like my dad's.   Hang in there!!!

 

-kelly 

Hi Laura,

 

I don't know the answer to your first question but my dad was diagnosed with kidney cancer in 1994.  He had the kidney removed and no sign of it until 10 years later.  In 2004 he had surgery to remove nodules in his lung. Last Christmas 2006 tumors were found at L5-S1 and his remaining kidney. He had spine surgery to remove a tumor in his back in the spring and a freezing procedure to the tumor in his kidney.  He is now taking Sutent and his remaining tumor appears to be smaller on his most recent CAT scan.  There is hope and it is treatable.  The cancer may be slow growing like my dad's.   Hang in there!!!

 

-kelly 

Many thanks for your reply.. The bone mass biposy showed positive for Clear Cell carcinoma.. We have our first appt with the oncologist today and Im hoping for a very aggressive treatment plan.. What I am grateful for is that my dad is so healthy otherwise.. hoping that lasts and helps him with the treatment.. Im very curious as to what the doc will suggest as we are hoping to hear they can operate on the kidney to remove it.. and radiate the pelvis... Not sure which would come first. .. I was a bit confused as the biopsy did not include a grade so Im still unsure about how quickly this type of cancer spreads once its in a secondary site like the pelvis bone.. ?

Thanks to all and any info you have to share would be greatly appreciated..

laura

Can anyone add thoughts to why when I asked the doctor for a grade of his clear cell he only said that clear cell is usually aggressive..?

Ask the doctor for a copy of the pathology report from the biopsy, and you may have your answer.

 

On 12/28/2007 gatosalvaje wrote:

Hi Laura,

 

I don't know the answer to your first question but my dad was diagnosed with kidney cancer in 1994.  He had the kidney removed and no sign of it until 10 years later.  In 2004 he had surgery to remove nodules in his lung. Last Christmas 2006 tumors were found at L5-S1 and his remaining kidney. He had spine surgery to remove a tumor in his back in the spring and a freezing procedure to the tumor in his kidney.  He is now taking Sutent and his remaining tumor appears to be smaller on his most recent CAT scan.  There is hope and it is treatable.  The cancer may be slow growing like my dad's.   Hang in there!!!

 

-kelly 

Hi Laura,

Last year around Feb. 2007 I was diiagnosed with RCC. I had a large lemon sized tumor on my left clavicle. We thought it was just a fractured clavicle but the lump started to get bigger and bigger. Finally I went to a specialist who said he wants a biopsy of the lump plus a catscan from my neck to my pelvis with contrast and he wants my kidneys checked.

Kidneys? What the heck does that have to do with a fractured collarbone?

Anyway, long story short, had RCC, had a tumor on my right kidney. When they woke me up from the biopsy they told me they found a mass on my right kidney. I said "That's all, only on my right kidney"? I have another one so who cares? They tell me "keep that attitude. I was still clueless. Anyway, they took my right kidney out laproscopically, it didn't go to any adrenal glands or anywhere else. Bonescan, brainscan, everything negative. Thank God.

Next stop Memorial Sloan Kettering. They are taking out the tumor on my collarbone. I thought it was the size of a lemon, but after one year my surgeon was telling me Lemon? You mean the size of a grapefruit. You only saw the tip of the iceberg. Two weeks ago I had a small nodule the size of a marble removed from the shoulder area. A 40 minute procedure, may have been a small deposit leftover from the last surgery on April 17, 2007. Anyway, never had radiation, chemo, or any other oral drugs. My teatment was very aggressive surgery. So far so good. They are very happy because my kidney surgeon told us that according to the size of the tumor in my right kidney that it must have been growing for 3 years inside me. That was last March 2007. My shoulder surgeon tells me that now it's 4 years that I had this stuff inside of me and it never went to any other neighboring organs and she doubts it ever will. She said it's had 4 years to reek havoc inside and it hasn't.

So far so good, but this stuff will scare the daylights out of you. It scared me so much that i'm on a journey now documenting my life pre cancer and during and present in a book I am calling  'But I Can't Have Cancer'.

Someone is watching out for me, so the reason for my writing is with the hope of getting it published and sending a huge donation to Mem. Sloan Hospital for Research. I feel like I must give something back to the special people that made it their priority of keeping me around and in good health.

Sloan is cutting edge with world renowned Doctors and aggressive ways of treating this horrible disease. I started out on this board in March 2007.

I return to check in on my fellow people with this scary disease. Please hold out. Don't give in and don't give up. There are plenty of success stories here. I recommend reading anything you can by 'BUNKER'. He has an incredible story. If I can help any of you in any way, pleas email me at

--Message edited by CancerCompass staff. For personal protection, email address removed. Consider private reply. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html--

. I will be more than happy to help you out, speak with you, or comfort you any way I can. We're all in this together. I will continue to keep all of you in my prayers. When I was down and out and scared out of my wits, I stumbled across here by accident. Things happen for a reason. Don't ask me how I got here, I just did. So I am more than grateful for those who helped me during the worst time of my life, and I want to let you all know that I am just an email away.

GOD BLESS YOU ALL!!!

Sad Eyes