Urologist or Oncologist, or both?

Babygirl05
Babygirl05 Member Posts: 42

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? 

Comments

  • Wehavenotimeatall
    Wehavenotimeatall Member Posts: 488 Member
    edited January 2018 #2
    I know it is possible

     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

  • stevez
    stevez Member Posts: 51
    I would (and will) see both

    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. 

  • Hd67xlch
    Hd67xlch Member Posts: 151 Member
    edited January 2018 #4
    If your NED........

    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.

  • icemantoo
    icemantoo Member Posts: 3,360 Member
    If you can get the referral go for it.

    Babygirl,

     

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

     

     

    Icemantoo

  • APny
    APny Member Posts: 1,995 Member
    I'm seeing a urologic

    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.

  • lobbyist0724
    lobbyist0724 Member Posts: 489 Member

    I know it is possible

     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

    Hi Annie, do you know why you

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

  • Cinnamongirl
    Cinnamongirl Member Posts: 199
    I had my kidney removed in

    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

  • Wehavenotimeatall
    Wehavenotimeatall Member Posts: 488 Member

    Hi Annie, do you know why you

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

    To see if this will

    explain my headaches and mild heart palpitations 

    but I really really want a brain scan

     

  • daisybud
    daisybud Member Posts: 531 Member
    edited January 2018 #10
    I see one

    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
    stub1969 Member Posts: 954 Member
    Baby

    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

  • lobbyist0724
    lobbyist0724 Member Posts: 489 Member
    edited January 2018 #12

    To see if this will

    explain my headaches and mild heart palpitations 

    but I really really want a brain scan

     

    Thanks. I guess it is just

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

  • Kidneybeans
    Kidneybeans Member Posts: 39
    What state do you live in?  I

    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
    Bay Area Guy Member Posts: 559 Member
    I was referred to a

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

  • AnnissaP
    AnnissaP Member Posts: 632
    I am like APny and see a

    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
    foxhd Member Posts: 3,181
    my current oncologist

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

  • todd121
    todd121 Member Posts: 1,448
    edited January 2018 #17
    Follow Up

    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
    Babygirl05 Member Posts: 42
    edited January 2018 #18
    Thank you

    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
    sasha_jax4 Member Posts: 43
    Get the answers you need

    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!