This process makes no sense to me. Any info?

Kidney cancer is pretty cut and dry on a CT scan. It will be a 10 cm mass and it will be vascular. Has it's own blood supply very clearly making it easy to confirm without a biopsy on a CT. 

Lots of nephrectomys without biopsys have occured in the majority of us posting here (my husband included). 

It is my best guess that removing the kidney with the tumor in the aorta would be too dangerous at this poiont. That is just my best guess as a layperson that reads. I would seek out a second opinion. 

As for the "2 years" well we all know hear that is CRAP. Dont' believe it. Especially with therapies emerging and great ones becoming approved recently. 

cakelady said:

Thanks, again. I guess I'll be saying that a lot for a while.

Here's what I don't understand.  I guess I need facts.  How do they KNOW it's cancer without a biopsy?  He painted cars for a long time, including two around the time the 'UTI' showed up.  Who's to say what's in his lungs is not some nasty overspray he sucked in past his respirator?  I mean, does cancer look like a certain thing?  The first CT of his kidney just showed a blur.  Up until Friday, they were still saying they don't even know if the nodes are being reactive or are actually affected, that they wouldn't know until they opened him up and felt them, hard or squishy. How did it not show anything in the aorta until the chest scan when from what I've read, it gets right in there by the kidney, like by the vena cava.  And it's not there, either.

I want to find out whether embolism is an option to starve the tumor.

I guess there's different types of denial.  I'm okay with it being cancer, if they KNOW it's cancer. Maybe I'm just in denial about the fact that they are just wanting to give him pills when everything I read says a RN is a good first step.

 

I see a lot of red flags with the story you are describing.  They don't know for 100% certainty that it is cancer without some type of pathology.  Also how are they going to try and shrink without even knowing what type of kidney cancer it is??? There's several different types of kidney cancer and some of those subtypes do not respond to treatments the same as the others do.  You need to be with an experienced urologist who is very familiar with renal cell carcinoma. MD Anderson is 6 hours and 40 minutes from UMC. I went there for my second opinion surgery and I had a great urologist here in my home town, but the experience issue is what troubled me. The doctor I saw here had done about 6 partial this HTML class. Value is partial nephrectomy in the past 12 months and the doctor at MD Anderson had done 4 in the week before my appointment.  

Good luck!

cakelady said:

All this information makes me feel better.

It doesn't seem so bleak.  Thanks to all of you.

 

cupcakes all around!

I am a native of Nola, having just moved to Austin two years ago. I am so sorry we have to meet here due to your husband's cancer diagnosis.  University Medical Center is an outstanding facility, as is West Jefferson. My husband and I were treated at West Jeff for over 20 years and the doctors there are outstanding. 

I was just diagnosed with Kidney Cancer in September and, fortunately, found an outstanding urology oncologist here in Austin who went to LSU Medical School! (Small World)

My first question to my oncologist was concerning whether or not the cancer would be biopsied. Apparently, and I don't know how, but both the urologist and oncology urologist said that they did not need to do biopsies, or at least, in my case they would not have to.

I hope you are able to find the answers you need for your and your husband's peace of mind.

As I do everyday, I will keep you husband, you and all of our fellow followers on this site in my prayers.

Hugs to all.

Nancy

There is always a wait for this test and that test before anything is done.  My youngest son at 42 was diagnosed with kidney cancer.  No biopsy because they said there was a large mass contained in the kidney and after removal we were told it was RCC.  He wanted to finished getting his teacher's degree before having it removed -- something like 2-3 months and the specialist agreed.  He did find and there was no spread.  Now almost 7 years later they have found a suspicious spot on his other kidney.  So far he has had a CT and sometime of ultrasound and they still can't determine what it is.  His wife asked about a biopsy and was told not at this time.  So on 12/1 they are going to do a CT with contrast even though it can be dangerous to the kidney and a scope to look into his bladder because he was passing blood.  Now he does has a history of kidney stones for years. He was feeling fine and having no problems until he passed the blood.  The only thing he was dealing with was his father's death.   When they went to see the specialist his wife had a list of questions and kept asking them.  She told me she was very pleased with the time the doctor spent with them and answering their questions.  Their first specialist had left UT (Univ of Tenn hospital).  Due to his age the first time, I feel, his insurance would never approve an MRI or some other tests.  Hopefully this time, if the specialist feels it necessary, an MRI and bone scan will be done.

This waiting is horrible but we have been thru it before.  His father just passed away after a 5 year battle with cancer and no it wasn't kidney cancer.  His was head and neck that kept returning and spreading.  And I remember the waiting to have a biopsy and then to start treatment and then to have surgery and then for all the testing done afterwards.  It was never quick and even waiting to get a doctor appointment with the specialist was a wait.

Wishing you and your family peace and comfort  --  Sharon

Ladylacy said:

Cancer

There is always a wait for this test and that test before anything is done.  My youngest son at 42 was diagnosed with kidney cancer.  No biopsy because they said there was a large mass contained in the kidney and after removal we were told it was RCC.  He wanted to finished getting his teacher's degree before having it removed -- something like 2-3 months and the specialist agreed.  He did find and there was no spread.  Now almost 7 years later they have found a suspicious spot on his other kidney.  So far he has had a CT and sometime of ultrasound and they still can't determine what it is.  His wife asked about a biopsy and was told not at this time.  So on 12/1 they are going to do a CT with contrast even though it can be dangerous to the kidney and a scope to look into his bladder because he was passing blood.  Now he does has a history of kidney stones for years. He was feeling fine and having no problems until he passed the blood.  The only thing he was dealing with was his father's death.   When they went to see the specialist his wife had a list of questions and kept asking them.  She told me she was very pleased with the time the doctor spent with them and answering their questions.  Their first specialist had left UT (Univ of Tenn hospital).  Due to his age the first time, I feel, his insurance would never approve an MRI or some other tests.  Hopefully this time, if the specialist feels it necessary, an MRI and bone scan will be done.

This waiting is horrible but we have been thru it before.  His father just passed away after a 5 year battle with cancer and no it wasn't kidney cancer.  His was head and neck that kept returning and spreading.  And I remember the waiting to have a biopsy and then to start treatment and then to have surgery and then for all the testing done afterwards.  It was never quick and even waiting to get a doctor appointment with the specialist was a wait.

Wishing you and your family peace and comfort  --  Sharon

First of all, I am so sorry for ALL you and your hubby are going through right now. Yes, the waiting is difficult. BUT I am glad your hubby has YOU to advocate and fight on his behalf. He's so lucky. The picture of the two of you says it all!

Just know WE are here to help you through this struggle and walk along side you if you want us to.

SmartPatients.com is another good source to gain information and support.

Seems you already are receiving such good information from us.

I too had to wait for about 2.5 months, but my tumor was small, yet in a precarious place in kidney so had to have a radical nephrectomy. the Urologist I saw showed me the difference between the suspect neoplasm's margins and the cysts I had too.

I am doing fine nearly two years later. AND there are such good treatments out  there.

I would just ask that you get 2nd opinions to ease your mind.

Tell your hubby a whole TROOP of CSN warriors is behind him all the way!!

Hugs to you both!

Jan

cakelady said:

working on paperwork

I have orders that were already on the books this week and it was too late to call the people and cancel on them, so this week is kind of a wash.  Not that we can do everything anyway because we have to wait to collect all the scans and find out about the biopsy, but I am doing my research and writing down everything I can so I at least know what to ask.

The plan is to transition him to real insurance for 2016 and then go after everything we can as far as opinions and options.  We've already been told that the path report for the biopsy won't be back until 12/08, so that's another three weeks.

It seems like so much foot dragging.  It's already been three weeks since the initial report came back showing the mass.  Do things typically move this slowly?

What are they going to biopsy?  The kidney mass or something else?