Newbie Post: Mets when kidney tumors are small?

famican

Hi! I've been lurking on this board for a while (as I wait and wait and wait for my appointment with the urologist to get here). Here's my story: I'm a 32-year-old woman who had elevated liver enzymes during a physical at the end of last year. My GI sent me for an abdominal ultrasound. My liver was fine (or so the radiologist thought then), but they found some tumors and cysts in both of my kidneys. The larger masses were a 1.2 cm tumor in the upper pole of my left kidney and a 1.6 cm tumor on the upper pole of my right kidney. I was assured that it was nothing and that I just needed a CT scan to officially diagnose them as benign. But when those results came back, surprise! They couldn't figure out if the masses were benign or RCC. To top it off, they found a 1.1 cm hypodense lesion on my liver and a 1 cm lesion on my lumbar spine. So then I was sent to a nephrologist, who assured me that i was healthy and this was nothing, but ordered an MRI just in case. The MRI was also inconclusive, and he is now sending me to the head of a urology at a major local university hospital (the urologist specializes in kidney cancer and robotic surgery). He's a highly in-demand doctor, so there has been a three week wait, and my appt is in a week. I've been so concerned and upset about the kidney masses (my grandmother died of kidney cancer at the age of 40, so I am drawing some obvious conclusions) that I never really gave a second thought to the spine and liver lesions. I was told they were nothing to worry about, but that's the same thing they told me about my kidneys! If my kidney tumors are so small, is it possible for me to have bone and liver mets that are around the same size and growing synchronously? Has anyone heard of that?

icemantoo

A few thoughts

Famicam,

 

Here are a few thoughts from a layman who is an almost  12 year surviver. First issue are your cysts or tumors RCC? That can best be deterined by a CT. It could be nothing (harmless Cyst) or it could be small tumors in both Kidneys which are both RCC. The good news in any event is that they are very small and unlikely to be causing mets to the liver or spine.  Not only do you need a CT but a specialist as far up the food chain as possable to Deal with a possable case of bilateral Kidney Cancer (in both Kidneys).

 

Unfortunately the first treatment right out of the gate for RCC is surgery. All of us survivors have had that. The cure rate for surgery alone in tumors as small as yours is close to the upper 90's. And even if a problem developes you are at a very early stage of RCC with a tumor under 2 cm.

 

 If it is RCC you will find a lot of support on this board as all of us have been there and done that including the surgery.

 

Icemantoo

 

GSRon

Wow... I know the uncertainty

Wow... I know the uncertainty can be trying for sure...  First question, did they  use any contrast on that scan..?  The contrast will light up if there is Cancer..  Next, if it is Cancer and you are very young.. plus your family history... perhaps they should see if this is hereditary..  You have some of the signs that it could be.  You say you are seeing an expert but do not say where and who...  the more info you give, the better we can try to offer suggestions...

Good Luck..

Ron

icemantoo

GSRon said:

Wow... I know the uncertainty

Wow... I know the uncertainty can be trying for sure...  First question, did they  use any contrast on that scan..?  The contrast will light up if there is Cancer..  Next, if it is Cancer and you are very young.. plus your family history... perhaps they should see if this is hereditary..  You have some of the signs that it could be.  You say you are seeing an expert but do not say where and who...  the more info you give, the better we can try to offer suggestions...

Good Luck..

Ron

Additional thoughts

famican, 

 

When I first read your post I had not realized you already had a CT. A CT can usually tell whether what you have is just a harmless cyst or RCC. But not always. The specialist you are seeing will make the best guess possable. I know the delay for your appointment is not fun, but your cyst/tumor(s) are so small that thet are not going to get worse in the interim. While a nephrectomy (neph) or partial is usually the first step your doctor may consider other approaches because it may be in both kidneys or a combination of other approaches and a neph or partial neph, The other approaches may include RFA where they zap a very small tumor or cyro where they freeze it.

It is the neph or partial neph which most of us had. Mine was almost 12 years ago before they were doing partials and before the divinci robbot when the big new thing was laproscopic surgery.

First lets hope that it is not Rcc, but if it is, it was caught very early and your prognosis is excellent. As you will see from this board you come to us very young, bit you are not alone in that regard. The only good thing about starting out so young is that you will have a much easier time with any surgery than us older guys had. My surgery was at age 59.

 

Icemantoo

dhs1963

Familial Kidney Cancer

Based on what you said:  multiple tumors on the kidneys, young age, and other family members, you might have familial kidney cancer.  Before opting for surgery, it is worthwhile to talk to someone who understands the implications....I recommend emailing Lindsey Middleton at NIH <middeltl@mail.nih.gov>.  At minumum, she can give you some pointers.  They might be able to help on the care also (though the federal budget cuts has been hard on them).

The thing is, with familial kidney cancery, the multiple tumors are not mets, but new spontainious tumors. 

NIH is working, among other things, to define standard of care.  With sporadic kidney cancer (non-familial), the goal is to get the tumor out.  With famiial kidney cancer, the issue is to preserve the kidney.  For example, my father has 18 small tumors (largest is 2.5 cm).  Since RCC rairly metastiszes when less than 4 cm, they leave the tumors in place and use active survailance to make sure they remain small.

 

 

NanoSecond

dhs1963 said:

Familial Kidney Cancer

Based on what you said:  multiple tumors on the kidneys, young age, and other family members, you might have familial kidney cancer.  Before opting for surgery, it is worthwhile to talk to someone who understands the implications....I recommend emailing Lindsey Middleton at NIH <middeltl@mail.nih.gov>.  At minumum, she can give you some pointers.  They might be able to help on the care also (though the federal budget cuts has been hard on them).

The thing is, with familial kidney cancery, the multiple tumors are not mets, but new spontainious tumors. 

NIH is working, among other things, to define standard of care.  With sporadic kidney cancer (non-familial), the goal is to get the tumor out.  With famiial kidney cancer, the issue is to preserve the kidney.  For example, my father has 18 small tumors (largest is 2.5 cm).  Since RCC rairly metastiszes when less than 4 cm, they leave the tumors in place and use active survailance to make sure they remain small.

 

 

I fully agree

I second this and can only add that you should now be under the care of a very experienced renal cancer expert oncologist. 

The NIH has the most expertise if it turns out to be familial cancer - which does seem very likely.

famican

dhs1963 said:

Familial Kidney Cancer

Based on what you said:  multiple tumors on the kidneys, young age, and other family members, you might have familial kidney cancer.  Before opting for surgery, it is worthwhile to talk to someone who understands the implications....I recommend emailing Lindsey Middleton at NIH <middeltl@mail.nih.gov>.  At minumum, she can give you some pointers.  They might be able to help on the care also (though the federal budget cuts has been hard on them).

The thing is, with familial kidney cancery, the multiple tumors are not mets, but new spontainious tumors. 

NIH is working, among other things, to define standard of care.  With sporadic kidney cancer (non-familial), the goal is to get the tumor out.  With famiial kidney cancer, the issue is to preserve the kidney.  For example, my father has 18 small tumors (largest is 2.5 cm).  Since RCC rairly metastiszes when less than 4 cm, they leave the tumors in place and use active survailance to make sure they remain small.

 

 

Thank you!

To clarify, I have had both a CT scan with and without contrast and an MRI with and without contrast. I didn't get a diagnosis from either of those tests (the radiologist leaned toward RCC after the CT and then leaned toward benign angiomyolipomas after the MRI, but without a whole lot of confidence either way). I have one larger, but still small, tumor on each kidney, plus 4 small lesions on my left kidney and 2 small lesions on my right kidney that are "too small to be characterized." I see the head of urology at George Washington University Hospital next week, along with a neuro-orthopedic surgeon at Georgetown about the spine lesion. I guess depending on what they say (or don't say), I will try that NIH contact (thank you!), look into an oncologist that specializes in genitourinary cancer, or, if I'm told they are benign, seek out another specialist to figure out why my kidneys are covered in these tumors and what that means. This is very scary, and I so appreciate you taking the time out to respond to me!