Possible met to remaining kidney

shamrocklady

Hello all,

I have been reading previous posts to learn as much as I can from others here. And I appreciate how supportive this community is.  Does anyone know about the possible course of action for deailing with a potential metastatic lesion to the remining kidney?

recap on my dad's background: primary tumor discovered and removed with a radical nephrectomy in November 2013. Pathology report suggested clear cell RCC, fuhrman grade 3-4 (aggressive), 13x12cm, at that time classified stage T2b, 5% sarcomatoid features (not sure the significance of 5%). There were a couple of spots on the other kidney and lower lobes of lungs picked up on original CT scan. Urologist told us not to worry about the other kidney bc the spots could be a stone or cyst but otherwise unspecified/unknown.

Now our new February 2014 CT shows the full chest, with some growth to spots on lower lobes (the ones with previous scan for comparsion) as well as many more all over both lungs discovered AND one spot on the kidney with growth (9mm to 10mm so not a huge amount) but they still arent sure what it is... We have our first appt with an oncologist in a couple of weeks. No prior systemic treatments.

I am uncertain what kinds of tests are used to further diagnose the kidney lesion, possible MRI? Is it too small now to diagnose for sure or even remove surgically? Better to wait and watch with systemic treatment? I have no idea. The thought of waiting to watch a spot possibly grow on my dads only kidney is frightening. So far his kidney function is okay.

Shamrock

 

NanoSecond

Uncertainty

Shamrock...  I am afraid to say that it sounds like your urologist dropped the ball back in November.  He should have suggested that you immediately consult an oncologist (hopefully one with expertise in RCC) back then.

5% sarcomatoid is very significant.  Luckily it is only a small percentage.  Sarcomatoid histology tends to be very aggressive when it is more than 50% of the tumor.  Regardless, the fact that there was even a small percentage should have suggested getting under an expert oncologists care ASAP.

If you have not do so, please also consider registering at: www.SmartPatients.com

and posting your dad's history.  I think you (he) will greatly profit by the expertise from the folks there.

 

shamrocklady

NanoSecond said:

Uncertainty

Shamrock...  I am afraid to say that it sounds like your urologist dropped the ball back in November.  He should have suggested that you immediately consult an oncologist (hopefully one with expertise in RCC) back then.

5% sarcomatoid is very significant.  Luckily it is only a small percentage.  Sarcomatoid histology tends to be very aggressive when it is more than 50% of the tumor.  Regardless, the fact that there was even a small percentage should have suggested getting under an expert oncologists care ASAP.

If you have not do so, please also consider registering at: www.SmartPatients.com

and posting your dad's history.  I think you (he) will greatly profit by the expertise from the folks there.

 

Thanks for the info!

Yes, I am happy to finally have appointments scheduled with two different oncologists. Getting a second opinion before even knowing what the first says... but I think it's good to hear different options!

I have registered at Smartpatients.com so I will check that out futher. Thanks for the suggeston!

Galrim

Scans

First of all I can only stress what Nano already posted: Get in contact with a RCC experienced oncologist asap, not just any oncologist (you dont mention the background of the one youre going to see). Especially with the path report your dad had/has this is important.

As for the undetermined lesion to the remaining kidney, have in mind that growth isnt alway growth when its small scale as in your dads case. I will try to explain this thought its a bit tricky to do in writing:

A CT scan is a 3D image made by combining a ton of 2D x-ray scan pictures.

This is done by generating a 2-dimensional image of a slice or section through a 3-dimensional object. Similar to looking at one slice of bread within the whole loaf. However, the "bread" isnt sliced the same way every scan. So based on the "slices" a lesion or infiltrate can have small variations in size on the images without any changes actually having occurred.

I for example have 3 infiltrates (deemed benign) in my lungs which from scan to scan changes from not being there to being up to 7 mm on the next scan. Then 5 mm on the next one. Gone again on the next one etc.

My urologist at one point told me that, unless such small lesions/infiltrates show continuous or significant growth consistenly from scan to scan, then they will normally not "touch" it when 10mm or smaller.

/G

shamrocklady

Galrim said:

Scans

First of all I can only stress what Nano already posted: Get in contact with a RCC experienced oncologist asap, not just any oncologist (you dont mention the background of the one youre going to see). Especially with the path report your dad had/has this is important.

As for the undetermined lesion to the remaining kidney, have in mind that growth isnt alway growth when its small scale as in your dads case. I will try to explain this thought its a bit tricky to do in writing:

A CT scan is a 3D image made by combining a ton of 2D x-ray scan pictures.

This is done by generating a 2-dimensional image of a slice or section through a 3-dimensional object. Similar to looking at one slice of bread within the whole loaf. However, the "bread" isnt sliced the same way every scan. So based on the "slices" a lesion or infiltrate can have small variations in size on the images without any changes actually having occurred.

I for example have 3 infiltrates (deemed benign) in my lungs which from scan to scan changes from not being there to being up to 7 mm on the next scan. Then 5 mm on the next one. Gone again on the next one etc.

My urologist at one point told me that, unless such small lesions/infiltrates show continuous or significant growth consistenly from scan to scan, then they will normally not "touch" it when 10mm or smaller.

/G

Oncologist Recs

Thank you both. I have already received a recommendation from Fox on the forum here for Yale Cancer Center in Connecticut with Dr. Harriet Kluger, though now she is scheduling 5 weeks out. So we have opted to see her collegue Dr. Mario Sznol sooner. Both specialize in melanoma and RCC and are actively involved in research with a particular interest in cancer immunotherapy. 

Also, because we could get an appointment quicker + they already have all my dad's medical records, we are seeing another oncologist in the same group as the surgeon at Hartford Hospital. His name is Dr. Jeffery Kamradt and he does work with RCC patients (he's the only one in the group that does), but from my online research I am not sure whether he has quite as much to offer. We will see when we meet him.

So we will be seeing 2 medical oncologists who work with RCC patients within about a week of eachother and will listen to what both have to suggest. 

And I really do hope that the kidney spot is actually nothing to worry about! That would make me feel much better because there is plenty to deal with already.

hydrangea

shamrocklady said:

Oncologist Recs

Thank you both. I have already received a recommendation from Fox on the forum here for Yale Cancer Center in Connecticut with Dr. Harriet Kluger, though now she is scheduling 5 weeks out. So we have opted to see her collegue Dr. Mario Sznol sooner. Both specialize in melanoma and RCC and are actively involved in research with a particular interest in cancer immunotherapy. 

Also, because we could get an appointment quicker + they already have all my dad's medical records, we are seeing another oncologist in the same group as the surgeon at Hartford Hospital. His name is Dr. Jeffery Kamradt and he does work with RCC patients (he's the only one in the group that does), but from my online research I am not sure whether he has quite as much to offer. We will see when we meet him.

So we will be seeing 2 medical oncologists who work with RCC patients within about a week of eachother and will listen to what both have to suggest. 

And I really do hope that the kidney spot is actually nothing to worry about! That would make me feel much better because there is plenty to deal with already.

Oncologist Rec

So sorry to hear about your dad but you certainly have come to the right place for helpful information and support.  I noticed in your last posting that you have an appointment @ Hartford Hospital w/ an oncologist in the same group as the surgeon.  May I ask if your dad's surgeon was Dr. Steven Shichman?  He is the surgeon that I had at Hartford Hospital.  I also see an oncologist but not in the Hartford goup.

Sounds very wise to see 2 different oncologists w/ RCC experience and determine what is best for your dad.

You and your dad are in my thoughts and prayers.

Diane

shamrocklady

hydrangea said:

Oncologist Rec

So sorry to hear about your dad but you certainly have come to the right place for helpful information and support.  I noticed in your last posting that you have an appointment @ Hartford Hospital w/ an oncologist in the same group as the surgeon.  May I ask if your dad's surgeon was Dr. Steven Shichman?  He is the surgeon that I had at Hartford Hospital.  I also see an oncologist but not in the Hartford goup.

Sounds very wise to see 2 different oncologists w/ RCC experience and determine what is best for your dad.

You and your dad are in my thoughts and prayers.

Diane

Hi Diane,
My dad's surgeon

Hi Diane,

My dad's surgeon was Dr. Anoop Meraney. We had so many other urologists that followed up while in the hospital it's hard to remember them all. 

How did you end up deciding upon the oncologist you are working with?