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Urologist or Oncologist, or both?

Babygirl05's picture
Babygirl05
Posts: 42
Joined: Oct 2017

Curious at to how many people with low grade RCC only see their urologist.  Is it safe?  I keep reading that RCC is so tricky and needs to be watched and treated by a specialist.  My urology doctor assured me that he "got it all" and declared me NED after surgery in September.  I was healing and doing great, feeling better, little to no anxiety, and exercising again.  Then at the end of December I got a bad UTI.  The meds didn't even start working until after a week on them.  Ever since, I have been experiencing memory loss, confusion, headaches, and light headedness on and off.  I know that it could be my anxiety because I had the UTI, but I'm not sure whether I'm over looking something that should be checked out further.  I had an ultra sound and urinalysis that both came back fine.  My urology doctor wants to see me back in his office in Feb to see why I'm having UTI symptoms but not showing an infection.  I think I would rather just get a referral and go see an oncologist.  A specialist in RCC.  I just think that with my extreme levels of anxiety, it would give me peace of mind knowing that a cancer doctor was telling me that all is fine and not just a kidney doctor.  I love my urologist and trust him, but he isn't a cancer doctor. 

Am I being overly dramatic?  Should I just let things be or go ahead and see an oncology doctor? 

Hd67xlch's picture
Hd67xlch
Posts: 147
Joined: Apr 2016

your NED, my urologist insisted on a base line nuclear bone scan, chest ct scan and pelvic/abdomen scans before removing the kidney to make sure it hadnt spread anywhere else.

I have been seeing a urologist since 2011 when the kidney was removed, then started seeing a oncologist in 2015 when it returned to my lungs.JMO, but for me its a waste of time seeing the oncologist, Ive had no treatment other than multiple surgeries, all my oncologist does is do blood work and tell me the scan results the radiologist types up. Im not complaining that Ive not had to have any oncologist treatment, but its just another Drs visit several times a year that my lung surgeon or urologist could do.

 Not to scare you, but the symptoms your experiencing with your head really do scream out for a brain MRI or CT scan just to be on the safe side. JMO, good luck.

Wehavenotimeatall
Posts: 479
Joined: Aug 2017

 but I doubt if  your anxiety is doing all that

I had a pretty similar things with a few UTIs which refused to go away

i still feel terrible but Consultant won’t do brain scan as says chromophobe unlikely to spread to brain 

My Gp is checking my iron levels

but I agree  with Hd

Please don’t panic but I would want a scan just to ensure you can rule it out

did  you ask for one

 

Annie

lobbyist0724's picture
lobbyist0724
Posts: 392
Joined: Sep 2016

Hi Annie, do you know why you GP is checking your iron level? Thanks.

Wehavenotimeatall
Posts: 479
Joined: Aug 2017

explain my headaches and mild heart palpitations 

but I really really want a brain scan

 

lobbyist0724's picture
lobbyist0724
Posts: 392
Joined: Sep 2016

Thanks. I guess it is just very very rare to have brain met for your tumor size and type. Good health!

stevez
Posts: 51
Joined: Dec 2017

I had a kidney removed in December and told my Urologist I wanted an Oncology referral.  I'm going next week.  Maybe he'll tell me the same things; don't know.  But I'm going at least for the first visit.  I am also considering a trip to MD Anderson later this year, but want to wait until after my first follow-up.  I'm very new in this so not able to give advice, but I know that I'll have less anxiety and sleep better if I check with a specialist.  I'd love to see an Oncologist who specializes in RCC but can't find one here in Louisville, at least yet.  Given your symptoms, I would go and get it checked out for my own peace of mind.  Prayers. 

icemantoo's picture
icemantoo
Posts: 3242
Joined: Jan 2010

Babygirl,

 

Not saying you need the referral, but if available give it a shot.

 

 

Icemantoo

APny's picture
APny
Posts: 1965
Joined: Mar 2014

I'm seeing a urologic oncologist, who did my surgery and specializes in kidney cancer. Many medical oncologists will not see anyone unless they have active cancer. But of course there are those who do so you'd have to shop around or ask for a referral.

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

I had my kidney removed in December and so far have not been referred to an Oncologist. My Urologist said the same thing that he got it all. I had a complete bone scan the day before surgery and several chest Ct scans leading up to surgery.. both came back clear. I suspect that should something show up on my scans in March I will then be referred. I deal with anxiety as well I think it is just par for the course however if you are that worried I would ask to be referred...cant hurt to ask right?

 

Best of luckSmile

daisybud's picture
daisybud
Posts: 468
Joined: Jan 2016

I decided to go to oncologist even though my urologist who did my surgery said it was not necessary.  It made me feel better and he sees me even tho I have been Ned.  He also does my follow ups and scan schedules but does not specialize in rcc. If I would ever have something show up I would go to phila to md anderson.  I still, see the surgeon/urologist too.  They work well together so I'm lucky. 

Kim

 

stub1969's picture
stub1969
Posts: 814
Joined: Jul 2016

In my opinion--I think the most important part is to see an RCC specialist.  If you have a true specialist that is a urologist, then you are in good hands.  If (and I pray it never does) your cancer progresses then an oncologist is probably in your future.  Take care.

 

Stub

Kidneybeans
Posts: 39
Joined: Dec 2017

What state do you live in?  I get treated at MD Anderson Cooper University in NJ. My Dr is a urologist/oncologist. There's another hospital in Colorado that's going to be certified as an MD Anderson in the spring. There are others fantastic hospitals and docs as well of course. A urologist/oncologist is your best best.

Bay Area Guy's picture
Bay Area Guy
Posts: 388
Joined: Jun 2016

I was referred to a specialist at Stanford that was a urologic oncologist who specialized in kidney cancer.

AnnissaP's picture
AnnissaP
Posts: 631
Joined: Sep 2017

I am like APny and see a urologic oncologist. I did see an amazing urologist, but he sent me.to this guy for the surgery and care. It is your health so if it will make you feel better then see about an oncologist. Your urologist is on top of your care though and the one who did the surgery. He knows exactly what is going on with you which is a good thing.

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

is also a urological oncologist. I am very satisfied. I would recommend a kidney specialist to most until at least after initiation.

todd121's picture
todd121
Posts: 1425
Joined: Dec 2012

You don't mention if your urologist is a urologic oncologist or a regular oncologist. Since you were stage 1 and grade 2, the odds are very good that it didn't spread. Your problems are probably not cancer. Did you have a CT of chest/abdomen and pelvis at least? It wouldn't be bad to have that as a baseline for future scans in addition to looking for anything out of the ordinary.

I wanted to see an oncologist that specializes in RCC, but I was Stage 3 Grade 3. I'm glad I was followed by an oncologist and not by a urologist, just because I think he followed me closer and understood better the risks of it coming back and where/what to look for. However, you might have trouble getting an oncologist to follow you, but that doesn't mean you shouldn't try. I'd go with one that has RCC experience if you can if you decide to get followed by one.

My cancer returned 2 years after and it was caught on a CT scan. My oncologist also ordered a baseline after my nephrectomy just to make sure I really was stage 3 and not stage 4. That involved a CT scan of my chest/abdomen/pelvis, a nuclear bone scan (looking for bone lesions) and an MRI of my brain with contrast. I felt pretty good after all that that I really was Stage 3 and not Stage 4.

Best to you,

Todd

Babygirl05's picture
Babygirl05
Posts: 42
Joined: Oct 2017

I really appreciate all the responses.  This is so scary and confusing so it’s comforting being able to ask questions from others who have already been there.  

My urologist is not an RCC specialist or a urologic oncologist.  He is just a regular urologist.  I love him and trust him completely, but this is cancer...this is my life!  I want the most informed and educated people telling me I’m NED.  I’ve had a lot of cancer in my family so it worries me about recurrence.  

sasha_jax4
Posts: 43
Joined: Dec 2017

If you feel better getting more answers go further. Keep in mind anxiety alone can play some nasty tricks on you though. I many years ago suffered from anxiety and had some crazy symptoms. Docs were puzzled turned out after many specialists and tests, I was getting migraines induced from anxiety. Dizziness, nausea, weakness palpitations, visual issues. Migraine prevention and anxiety meds put my symptoms away. Good luck!

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