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Should I be seeing oncologist

Bryn1108's picture
Bryn1108
Posts: 94
Joined: Jul 2017

Hi, I had my left kidney removed due to cancer July 2016, my urologist said everything was clear. I had a 9 cm tumor, stage 2. I have only seen the urologist since surgery,  he orders every 6 months CT scans, and says,  see you in 6 months.  Should I be seeing a specialist, my urologist is great,  buy, extremely busy,  and I feel like I'm not being watched  closer. Am I right. I read your post and most of you receive  more test and scans, and I'm not.  I just want to be knowledgeable with this. Thank you all for sharing your knowledge.  

ImNotDeadYet's picture
ImNotDeadYet
Posts: 244
Joined: Apr 2017

I'm glad you asked before being too far along in the process. It's important to have an oncologist that specialized in RCC. There are lots of good oncologists out there, but most general oncs don't see a lot of RCC patients. And your urologist, while I'm sure he's excellent, doesn't have the depth of knowledge and experience that someone who works day-in and day-out with RCC patients will have. Depending on where you live, people here might be able to recommend someone.

Good luck!

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

I asked the same question after my surgery. The Dr said there was really no need and to wait until my first post op scans. Those can back clear, so nothing was said. I was also told not to get into a big hurry to see an oncologist. My anxiety is super high right now. I’m thinking about going to see one just to get a peace of mind.

Cinnamongirl's picture
Cinnamongirl
Posts: 199
Joined: Jan 2018

I still see my urologist. I asked the same question and was told as long as you are cancer free you do not need an Oncologist. He said we deal with kidney cancer by removing it. When you get to a point when it cannot be surgically removed then I will refer you to an Oncologist.

However since a "new spot" has appeared on my remaining kidney I have asked for a referral to Seattle. We will however being doing an ablation to remove it.

I sympathize with you as this can all be so confusing. However I always come here with questions and for advice. I have never been disappointed. I LOVE THIS FORUM AND EVERYONE ON IT!

Cin

icemantoo's picture
icemantoo
Posts: 3335
Joined: Jan 2010

Bryn,

 

--give it a try.

 

 

icemantoo

CarlosRosado's picture
CarlosRosado
Posts: 89
Joined: Dec 2017

Yes yes yes 

I received the same answer from my urologist. My pathology was type 1 grade 2 clean margins. She basically told me that I should wait for my 6 months scan. But for now I should be fine

it wasn’t enough for me.  I made an appointment with an oncologist with experience on RCC . I will see him monday and get more info

 

Bryn1108's picture
Bryn1108
Posts: 94
Joined: Jul 2017

How do I find a oncologist who specializes in RCC? Call them all and just ask?

I live in lower Alabama,  don't laugh,  we love this area. Close to beach and just few hours to mountains. So win, win. 

Should I go to Mayo Clinic,  Jacksonville,  FL.  That's only 4 hours away.  Thanks friends 

todd121's picture
todd121
Posts: 1449
Joined: Dec 2012

One of the ways, look for national studies in RCC, then look for participating doctors/hospitals near you. The contact person is almost always a nurse working with an oncologist that is interested in RCC/does research in RCC.

You can do what Fox and Iceman said too. Just call up their oncology department and see if they have anybody that does research/specializes in kidney cancer. Not all universities have it, though. Here where I live in Orange County, California, I'm near UC Irvine. They have a great cancer center, but no RCC specialists. However, there are plenty in Los Angeles and San Diego.

You had Stage 2. Not really to be messed with in my opinion. I'd want good followup. The thing is, urologists are very likely to refer you if you get mets. I'd rather be followed by a doctor with a stake in the game (meaning they are going to be the one managing your care). RCC oncologists are much better educated on metastatic kidney cancer (symptoms, treatment, follow-up) than urologists.

You can also see if there's a national cancer center near you. They all have RCC specialists. You want a medical oncologist that sees RCC patients/follows the research on RCC. If at all possible. Ask them how many RCC patients they see a year. See if they participate in studies (have patients entered into RCC studies). Those are the things to look for.

Best to you,

Todd

Kirby1831
Posts: 14
Joined: Mar 2018

HI! Pensacola has a great team of Oncologists.  You can start with Woodland Medical Specialists or Sacred Heart.  Best of luck to you!!

icemantoo's picture
icemantoo
Posts: 3335
Joined: Jan 2010

Bryn,

 

to the Cancer center at UAB.

 

icemantoo

foxhd's picture
foxhd
Posts: 3183
Joined: Oct 2011

iceman just said.

icemantoo's picture
icemantoo
Posts: 3335
Joined: Jan 2010

UAB refers to the University of Alabama Medical School in Birmingham which is the top Medical facility in Alabama. 

 

 

icemantoo

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