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Oncologist or Not

stephanieshaw
Posts: 1
Joined: May 2018

I received my pathology report back this week. Grade 2 stage pT1a. I meet with my family practice dr Thursday morning and my urologist next Thursday morning. My question do I ask for an oncologist or just let the two Drs I see now continue to monitor me. I totally understand that my situation is better than a lot of others but I’m still really worried and scared. 

 

 

Steph85's picture
Steph85
Posts: 157
Joined: Feb 2018

For my piece of mind I saw a oncologist. My surgeon is a urolgic oncologist but my oncologist specializes in RCC. I had stage 1 grade 2 CCRCC. I feel good having 2 oncologists on my side. Plus my UO wasn't going by typical protocol with scans, and I got a second opinion from the rcc oncologist. Hope this helps.  

Steph

 

icemantoo's picture
icemantoo
Posts: 3198
Joined: Jan 2010

Stephanie,

 

If an onc. consult is covered ny your insurance go for it if it gives you piece of mind. My uro had a siecond specialty in onc. so I did not.

 

icemantoo

todd121's picture
todd121
Posts: 1422
Joined: Dec 2012

My situation was a bit different, because I was diagnosed as Stage 3 Grade 3. I saw a regular oncologist (no RCC expertise) that my urologic oncologist referred me to. However, his opinion seemed off. Actually, he used some online tool to calculate my prognosis and when I came on here everybody said that tool was not reliable. He had given me a rosy prognosis. So I got two more opinions (covered by insurance) of RCC oncologists. I'm lucky where I live near Los Angeles there are several cancer hospitals and universities with kidney cancer programs, so there were excellent doctors available.

The other two RCC docs gave a more accurate prognosis which inidicated I should be followed closely and they also both thought I might want to do a drug study (an adjuvant trial). I picked one of them as my oncologist and have been with him 5 years. He's followed me. I think I'm getting excellent care where if I had stayed with my first oncologist I think I would have only gotten ok care. Since I had a met that was caught early, I'm very happy with that oncologist.

RCC oncologists, in m opinion, are worth the effort to see if you can without too much trouble/money. I do drive 1-2 hours each way to see him, but driving an hour in the LA area is the norm.

I also found out later that my current oncologist is consulting/helping the first oncologist to follow some of his RCC cases. (The first oncologist was new to the area when I first saw hime). So it's also possible you can find a local oncologist that can get a consultation with an RCC specialist. More likely to happen if you see the RCC oncologist as a patient first then transfer locally.

In my experience I'm glad I was not followed by my urologist, even though he wanted to do it. I think my met would have been caught much later if I had done that.

Todd

jazzgirl's picture
jazzgirl
Posts: 129
Joined: Nov 2017

Hi Stephanie,  My surgeon is a urologic oncologist and an RCC specialist serving both Urology Department and Clinical Cancer Center at a university hospital.  He was my "second opinon" doc and confirmed the original diagnosis given by a doctor with whom I was not comfortable.  So glad this second choice is first-rate.  I cringe at the thought of any other surgeries, but if I had to, I would go back to "my" surgeon.  His expertise helped me with the worried and scared state you are now facing.  I hope reading some of our stories can help with that for you.  Keep checking in and take care - 

Hoss79's picture
Hoss79
Posts: 78
Joined: Nov 2017

I was told not to get into a rush with it being stage 1 and to wait until my 3 month Scan. Everything came back all clear and I’m coming up on my next scan. I’ve been on the fence the entire time about this issue. My remaining kidney has 2 cysts, but they aren’t concerned. I think I might try to find an RCC specialist just to get some peace of mind. Since I’m about 80 miles from St Louis I was thinking about siteman. Anyone have any suggestions.

icemantoo's picture
icemantoo
Posts: 3198
Joined: Jan 2010

Hoss,

 

Siteman which is part of Barnes Jewish and Washington Universtity is definately near the top of the totem pole. My ex son in law did a Radiology Fellowship there and one of my granddaughters was born at MO Bap (Missouri Baptist)  which is part of the group some 20 years ago.

 

 

icemantoo

medic1971's picture
medic1971
Posts: 189
Joined: Sep 2015

 

Went to MD Anderson for treatment. (surg to remove two small tumors on my right kidney).  I never saw an oncologist until I went in for genetic testing.  The only reason I even saw him was because that is just part of the genetic counseling.  We spoke more about the testing process rather than my original diagnosis

But if you want to meet with one, then by all means do it.

Jason

LMCRJB13's picture
LMCRJB13
Posts: 82
Joined: Oct 2017

I often wonder the same thing.  I see my urologic oncologist but there has been no mention of a medical oncologist.  I feel like I am in good hands though.  My genetic counselor flat out said that there is no need for a medical oncologist at this point.  I just don't want to miss a beat with this nasty, RCC beast.  

You are your best advocate and judge - see an oncologist if you're more comfortable.

Best!

Ryan

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