Complex Renal Cyst - New Member

lbmiller77 said:

Thank you Jan, I had the CT

Thank you Jan, I had the CT done on Jan 7th which is what sent me down the rabbit hole. The radiologist who read the CT rated the cyst as Bosniack III. My primary requested an MRI to clarify the findings.  A second radiologist looked at the CT results and the MRI and downgraded the cyst to IIF. I have an appointment scheduled with an urologist for Tuesday morning to get a second opinion. A number of people have expressed their fears about me waiting six months and it has me worried. I've read medical journals that said only 14% of those categorized IIF who have follow up MRI/CTs end up seeing growth in 6 months. I thought those were excellent odds and it has brought me some comfort. What are the chances that a small cancerous lesion spread and/or metastisize in 6 months? Thank you for the response,

 

Laurie

I would really want the opinion of a urologic oncologist (at least) possibly a medical oncologist. Either with RCC experience would be recommended. My urologic oncologist told me for my cyst (and I've heard this from others on here) that imaging alone could not tell if it's cancer or not. With your history, getting genetic testing would also be a good idea. There's no downside to getting the genetic testing that I can think of.

Perhaps your cyst is different than most of ours...or maybe the people you're seeing don't know kidney cancer that well.

They don't do ablation for indeterminate cysts. Because they need to know if it's cancerous or not for a prognosis/followup care. Ablation destroys the cyst. They need to have it under a microscope to tell definitely what it is.

Of course take what I say with the understanding I'm not a doctor!

Find a urologic oncologist (at least) preferable with RCC experience/training to make your decisions about following it or surgery. I wasn't a candidate for a partial either because my mass was in the center of the kidney, but my mass was 6cm.

How can they tell about the liver lesion without biopsy? I just wouldn't trust anyone without RCC experience. It's a rare(r) cancer and not seen often by these other specialists.

Best to you,

Todd

lbmiller77 said:

Thank you for mentioning the

Thank you for mentioning the genetic testing. I was thinking the same thing when I started researching the rates of kidney cancer when the patient has multiple first and second degree relatives with RCC. The study was done in Iceland and showed that 60% of RCC patients had at least one first degree or second degree relative who had RCC. The study also showed that if familial etiology is a factor, the patient experienced onset at a young age (median age was determined to be 37). It was rather unsettling to read this. I'm starting to create a list of questions for the the urologist and I will make sure to ask about the genetic testing and making an appointment for urological oncologist. Someone else suggested seeking out a uroradiologist to read my CT and MRI and that will also be making the list.

I want to keep emphasizing I'm not a doctor. I'm just sharing what I've learned from talking to some and going to some seminars, etc.

Genetic RCC is not at all common. I was told by a specialist in genetic cancer, that 90% of cancers are not inherited cancers. They are from mutations to genes during life and don't come from the parents. So I'm puzzled by your Iceland study.

Most of us do not have inherited RCC.

As I've said before, they've done a lot of research on inherited RCC at NIH and they have a very good handle on this disease. If you turn out to have that type, you really want to loop those people in. It's a different disease altogether than what the rest of us have. I heard a doctor that studies this say that they have quite a good track record treating this kind of cancer possibly even without removing the kidney. (And I think this depends on the type of genetic RCC. There are many types of both inherited and non-inherited RCC).

One trick to finding a specialist that is interested in RCC, is to look for RCC trials in your area. The national list of drug trials and studies lists a contact person for all those studies. Those people are usually people tied into RCC research. They will be connected with other specialists interested in it. Call them up and see what kind of doc they are (usually a urologist, urologic oncologist, or a medical oncologist) and ask to see them or for a referral.

You can also just post a question here telling the area you live in and other people here will tell you where you might go. National Cancer centers are a good place to look if you are near one. University medical schools often have people.

Hugs,

Todd

lbmiller77 said:

Thank you for clarifying

Thank you for clarifying this. I saved the webpage that contained the study. Maybe I miss read something.

I live in Wisconsin and reached out to the University of Wisconsin Carbone Cancer Center this morning to see if they could point me in the right direction. If anyone else has any suggestions, I would greatly appreciate it.

I think I've heard mention of that cancer center here. Maybe somebody who lives near there can make a suggestion?

Hope you get it resolved soon and it's in your favor. Would love to have you not have to stick around here.

Todd

lbmiller77 said:

Hopefully the final word

I saw the urologist this morning and we spent sometime talking about why they downgraded me from a III to a IIF. He said he still sees far more benign features than malignant features.  He wants MRIs done every 6 months for the next 5 years to check for changes in complexity and density. I am so relieved and glad he took the time to answer my questions. I just wanted to say thank you to all of whom responded to my questions and wish you all better health.

 

Laurie

Well, Laurie, that is good news!!

From what I know, RCC is slow growing and usually contained.

So for now, let this go and live your life!!

Keep us informed. It was "nice to know you."

Hugs my dear..now breathe...breathe..

Jan

Definitely get a 2nd opinion!!  Try to find a urologic / oncologist. 

I also had discomfort, and that's what sent me to the doctor originally.  I wouldn't really refer to my discomfort as pain, but whenever I rolled to my left side while sleeping it felt like I was rolling over onto a tennis ball and it would wake me up.  That was going on for a few weeks when I decided to see my doctor.  I was told that this is sensation is not that unusual and it typically will happen during the growth phase of the mass.  The growth phase, I was told, is usually about 6 weeks long and then goes dormant for a while, etc.  I received kudos from my doctors for being so in tuned with my body.

So, my suggestion to you is to move on.  Find another doctor, a specialist in kidney cancers.  Good luck.  (not sure where Kaiser is)

Donna~