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Second opinion. Who would you see?

Steph85's picture
Steph85
Posts: 166
Joined: Feb 2018

My Mother in law is wanting me to see a nephrologist to get a second opinion. My Urologist wants to do a scan at 6 months, 2 years, then 5 years. Has anyone with clear cell RCC seen a nephrologist?  Or should I look into seeing a Oncologist? 

 

Stephanie

stub1969's picture
stub1969
Posts: 934
Joined: Jul 2016

Is your kidney function deteriorating or is it at an alarming level?  If so, then I'd agree with seeing a nephrologist.  IF this isn't the case, then stick with your urologist.  I have a nephrologist that I see a couple times per year, but I have medullary sponge kidney.  I take a couple different medications to help control stone development.  The nephrologist ensures that my numbers are in balance with this medicine.  

As part of one of my appointments, my nephrologist had me get a CT so he could review the current stones in my kidneys.   Stones were still fine, but the mass was a surprise.  Right away he referred me to a urologist.

Hope this helps,

Stub 

Steph85's picture
Steph85
Posts: 166
Joined: Feb 2018

Ok, good to know. Thank you! I figured my PCP ref. To a Urologist for a reason. She's just concerned about the schedule for my scans. I feel like I should be getting more. Anyway, thanks for your reply!

Stephanie

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

I would think that at bare minimum you would do at least a couple six month scans, then, if clear, move to yearly. Jumping to two years so quickly feels a little risky to me. I am curious as to why no oncologist is involved. After my neph, I was referred to one before my mets showed up. It's my oncologist who orders the scans.

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

I agree with the scans. After my radical I was scanned at 3 months. Now I wait 6 months. If I get clear results I wait another 6 months if all clear I go to yearly. Lately I have been thinking about seeing an oncologist just to ease my mind as the urologist has done everything since my diagnosis. Nothing against him, but I just want some peace of mind. I’m about 90 miles from St. Louis. Thinking about going to siteman cancer center.

Steph85's picture
Steph85
Posts: 166
Joined: Feb 2018

Wondering if because I'm a 32 yr old female he thinks it wont reoccur. .? His words are "This is just a bump in the road, you'll be fine. Once clear at 5 yrs, thats it! "  Not to sound negative, but what is he basing this on? I'm not a statistic. I think seeing an oncologist may be necessary.  Thank you for your response.  I just don't know if I'm jumping the gun or not. Too many people have died in my family from cancer including my Mom. Not going to put my kids through that if I can help it! 

 

Thank you everyone!

Stephanie

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

Steph I was 37 at the time of my surgery. The Dr told me since I was so young they are going to scan me for 10 years instead of the 5. I tried not looking to much into it as if they think it’s going to come back. The Dr said I was low risk. Again it’s all a guess because cancer will do what it wants when it wants. I would get a second opinion for sure.

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

Urologists specialize in urological issues. They may be trained to spot the tumor and remove it, but they're not experts on it recurring/metasticizing to other areas of your body. I had my surgery by one of the top urologists in the area. And he said I needed to see an oncologist to manage my ongoing care. Yes, you're young, and hopefully it won't recur. But if it does, I"d think you'd want to be working with an expert in renal cell cancer and not just a great urologist.

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

Same here I was treated by one of the top urologists in my area. I asked him about an oncologist and he said to wait until after my 3 month Scan and we will go from there. That scan came back NED (very thankful). Nothing else was said. At Siteman from what I have read they have specialists for RCC. This is still all just all new to me. I just want to try and stay aggressive, so I’m going to go see one of the specialists.

Steph85's picture
Steph85
Posts: 166
Joined: Feb 2018

I fully agree. I scheduled an appt. With an Oncologist who specializes in RCC. I'll see him on the 23rd. I asked my urologist before if I needed to see an oncologist and he said no. Oh well. Thank you for your advice!

Stephanie 

icemantoo's picture
icemantoo
Posts: 3362
Joined: Jan 2010

Steph,

 

If you are concerned about a second opinion look into another Urologist as this is primarily in their wheelhouse. a nephrologist is ok if your kidney function numbers are too low and an Oncologist is good to see if tou are concerned about it spreading. Discuss  both as well as your scanning schedule with your PCP. Also suggest to your PCP and uro that you would be more comfortable with yearly scans for the first 5 years. There is no right or wrong answer to your questions.

 

 

icemantoo

HDPete
Posts: 16
Joined: May 2017

My surgen is a urlogic oncologist, I had my partial in March 2017. i had scans in July of 2017 seen him again in January 2018, an he  scheduled  me to come back an see him in july of 2018 But didn’t schedule scans just labs. I asked him why an he said the size of my tumor an grade tends to behave well. I was 2.5 cm type 1 grade 2  papillary. I did have a mri of the  abdomen unrelated to my kidney issue in november 2017. If I recal that was another reason he didn’t schedule me for scans this coming July. But I seen a follow up schedule online somewhere similar to what your schedule is. 

APny's picture
APny
Posts: 1998
Joined: Mar 2014

My surgeon is also a urologic oncologist. Mine was stage 1 and I had a partial neph. I had scans every six months for 3 years and now I go once a year. I don't think I'll stop after 5 years and will insist on follow up even if every 2 years. Definitely find someone who specializes in kidney cancer.

Kat23502's picture
Kat23502
Posts: 179
Joined: Feb 2016

I don’t think it would hurt to get a second opinion from another urologist. Or, at a minimum, bring the accepted guidelines to your next appointment and talk to your doctor about why his protocol differs. 

 

A nephrologist wouldn‘t really be appropriate for this as they specialize in medical renal disease. Failure is the functional unit of the kidney or other functional disease of the kidney is quite different than a mass. 

 

Good luck!

AnnissaP's picture
AnnissaP
Posts: 632
Joined: Sep 2017

My surgeon was a urologic oncologist as well. I just had my first 3 mth scans and have yet to see him to get a follow-up plan. I always say that if you are unsure, do what you need to do to make yourself comfortable. This is your health and I always encourage people to advocate for themselves.

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