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feeling stupid and frustrated

twinthings's picture
twinthings
Posts: 384
Joined: Jun 2013

I am SO frustrated!  I have called several oncologists in my area, in hopes of getting an appointment and all of them have told me the same thing.  Unless I am currently diagnosed with cancer, they will not schedule me.  Furthermore, most of them make me feel stupid for even asking, when they say things like, "we only see cancer patients...we are oncologists".  Well, no s***!! 

It's been suggested to me by several fellow survivors on this forum, that I should seek care with an oncologist to ensure I am getting the best care possible.  I can't manage to get past the receptionist.  What am I doing wrong??

I am currently scheduled with my urologist for my first post-op 6 month scan, a chest x-ray, later this month but would rather have a CT or even a PET scan.  Unfortunately, my doctor doesn't think those other scans are warranted.  At the very least, I'd like a second opinion but, no one will see me.

Any advice? 

 

Sindy

srbelle1
Posts: 123
Joined: Jul 2013

Sindy:

although you are more than likely free of cancer, you are still a cancer patient and perhaps that is what you should say to the receptionist.

"I have renal carcinoma which was dx in ____"

sarah

twinthings's picture
twinthings
Posts: 384
Joined: Jun 2013

Sarah, thanks for the advice.  What you say sounds good in theory but, as soon as they find out I had surgery, the answer is always the same...we only see people who have a diagnosis of cancer.  One lady said "if you had your cancer removed you are not a candidate for our clinic.  We see patients who require treatment.  We do not do second opinions and we do not do screenings". 

I actually may have found a place that will at least schedule me for a consultation but, not without a doctor's referral.  The problem with that is, my doctor doesn't want to refer me till a I am 1 year post-op. 

At any rate, I have called my doctor and left a message with his nurse, so, we'll see how well this goes over, if and when she calls me back.

 

Again, thanks for sharing your thoughts.

Sindy

Suekub's picture
Suekub
Posts: 112
Joined: Apr 2013

So sorry to hear of your frustration! Are you not able to get a CT referral from your GP (do you call them your primary care provider in the US?). This is something I would discuss with my regular doctor and ask for their assistance. Of course, the medical system in the US is very different to here in Australia so maybe this us not an option for you.

Good luck.

Sue

twinthings's picture
twinthings
Posts: 384
Joined: Jun 2013

Thank you for your thoughts, Sue!

I am working on that, as we speak.  I do kinda have a family doctor, or, primary care physician, if you will.  But he isn't worth much, really.  I have been meaning to establish care with an M.D., vs the D.O., I currently see.  He's great for the common cold, but sadly, that's about it.

 

Thanks for the luck, I'm gonna need it!!

Have a lovely day!

 

Sindy

icemantoo's picture
icemantoo
Posts: 1470
Joined: Jan 2010

Sindy,

 

As I recall your Urologist was an expert on RCC. A cetain amount of Oncology rubs off those experts which most Urologists do not have. So far I am in my 12th yeay following surgery with seeing my nephrologist only for the RCC issues. I have also been seeing a Nephrologist the last couple of years for Kidney and BP issues.

 

Not all Oncologists are good. A few were busted in Michiagan a few months ago fot Medicare and Medicaid fraud in giving Cancer treatment to those that did not have Cancer. Right now they are out of a job trying to get a position with Sarah Palin's imaginary Death Panels.

 

Icemantoo

growler9
Posts: 39
Joined: Oct 2011

You've been doing so good recently not flaunting your political niavety!

I guess old habits are hard to break.

Keep working on it.

Alan

foxhd's picture
foxhd
Posts: 1867
Joined: Oct 2011

Strange situation sindy. Let's hope your doctors know what they are doing. After my nephrectomy they referred me to an oncologist even though they said there was no evidence of further cancer. Of course in my case I had 20 tumors within 6 months. Good luck in your persuit.

twinthings's picture
twinthings
Posts: 384
Joined: Jun 2013

fox, I hear stories like yours all too often.  It's stories like yours and Tillies and many others that push me to stand up and speak up.  God forbid I end up in your shoes, let it be caught immediately. 

I read most everything you post (or at least try too) and just gotta say, I have ENORMOUS admiration for your bravery.

Prayers for you!

srbelle1
Posts: 123
Joined: Jul 2013

my husband has both a urology surgeon and an oncologist; both have specialty with kidney cancer. 

Interestingly, they view follow up treatment differently and communicate with each other regularly. 

I am not sure why Sindy is having a difficult time getting in to see an oncologist but from what we have experienced with all of the doctors, being wrong can really have consequences.

sarah

twinthings's picture
twinthings
Posts: 384
Joined: Jun 2013

Thank you for your thoughts, Sarah!

It's because they view follow-up care differently that makes me push for an oncologist to follow me versus my urologist.  I know my surgeon/urologist needs to continue my post-op follow-up care through May, 2014, at which time, I will be 1 year out.  But, for my own peace of mind, I want to be followed by an oncologist, who, I think will be more likely to follow me with scans versus x-rays. 

It sounds like your husband has the ideal situation...if there is such a thing with cancer. 

Sindy

 

HarleyMom117's picture
HarleyMom117
Posts: 27
Joined: Oct 2013

I am also surprised by both your urologist & the oncologists you have contacted.   I have my next appointment in January (3 months post-op).  I will see both my urologist/surgeon, and an oncologist (this appointment was set up for me -- I didn't even have to ask).   I will have blood work, a chest xray, and an abdominal/pelvic CT.   I hope you get the answers you're looking for, and can get in with someone SOON.

twinthings's picture
twinthings
Posts: 384
Joined: Jun 2013

Thanks for your thoughts, harleymom! 

I continue to wait on a return phone call from my urologist's office, but am giving up hope in hearing back from them.  It boggles my mind that I have left a voicemail with my own doctor's nurse, as well as a couple different oncology clinics, to no avail.  In all fairness, two clinics did return my call, but, because I "don't have cancer", they won't see me. 

 

I will be having a chest x-ray on the 27th of this month so, I will address the issue with the doctor personally...again.  Wish me luck!

 

It sounds like your doctors are on top of their game.  Good for you!  I wish you well with your scans in January.

 

 

garym's picture
garym
Posts: 1651
Joined: Nov 2009
In case you are having a rough day, here's a stress management technique recommended in all the latest psychological journals.   The funny thing is that it really does work and will make you smile.
 

1. Picture yourself lying on your belly on a warm rock that hangs out over a crystal clear stream.

2. Picture yourself with both your hands dangling in the cool running water.
 
3. Birds are sweetly singing in the cool mountain air.
 
4. No one knows your secret place.
 
5. You are in total seclusion from that hectic place called the world.
 
6. The soothing sound of a gentle waterfall fills the air with a cascade of serenity.
 
7. The water is so clear that you can make out the face of the Congressman you are holding beneath it.
 
See it worked. You're smiling. You feel better already.

 
 
 
twinthings's picture
twinthings
Posts: 384
Joined: Jun 2013

I am smiling now, thank you!  I will try this everytime I'm having a rough day, but, I have to substitute #3 with something soothing.   Birds freak me the hell out!!  No matter how big or small, or how sweetly they sing, I hate birds...ALL birds. 

No disrespect to all you bird lovers out there. 

 

twinthings's picture
twinthings
Posts: 384
Joined: Jun 2013

Iceman, my urologist is not an expert on, nor does he specialize in, RCC.  He specializes in kidney transplants.  And from what I have read about him, if I needed a transplant, he's the guy I'd want doing it. 

And, all due respect, I cannot let the fact that there are some not so good oncologists out there, detour my efforts in finding one to follow my care.  As you probably well know, there are some not so good doctors in every field of medicine.

Thanks for sharing your thoughts!  I value everything you say...with the exception of politics Wink

 

Sindy

 

foxhd's picture
foxhd
Posts: 1867
Joined: Oct 2011

that 50% of all doctors graduated in the bottom half of their class.

srbelle1
Posts: 123
Joined: Jul 2013

yup, we have met a couple of those docs!

sarah

a.oakley
Posts: 32
Joined: Oct 2012

My experience has been that it is very difficult, if not impossible, to schedule your own appointment with a specialist.  You know when you phone your doctors office and the answering system says Push 1 if you are a physician, Push 2 if you are a patient etc.....I am so tempted to Push 1 and most likely be able to have my concerns addressed promptly.  Instead I'm on hold for what seems like forever.  So, I think it is better if you get your family doctor to either order the test you want, or you get the family doctor to schedule you an appointment with an oncologist.  Our family doctor is amazing and has helped us.  He actually got a surgeon to meet us on a Saturday morning.  Impressive!  My second point is that specialists tend to have a difficult time referring to another specialist.  Maybe it's an ego thing.  But I do think in your situation, your current doc does not think you need an oncologist.  When my husband hit this resistance in his caregivers, we went back to our family doctor who took care of business and got us the referrals that we wanted.  Good luck to you. 

twinthings's picture
twinthings
Posts: 384
Joined: Jun 2013

A--Thanks so much for your thoughts!  What you say makes sense.  My PCP is someone I see out of convenience, for strep throat or cough medicine...simple things.  And, because he's close, not because he's good.  His staff are really rude and rarely return phone calls.  That said, he would refer me to a specialist if I asked him but, not before suggesting a sleep study or accupuncture or something else totally unrelated.  There's also a language barrier, as, he is of middle eastern descent and I, am not. He really is a nice man, tho!

If I don't make headway with my surgeon on the 27th, I will consider returning to my PCP. 

With an (immediate) family history of cancer as strong as mine, I'd rather my surgeon err on the side of caution and order a PET.  The fact that my parents died within 6 weeks (dad) and 9 months (mom) of diagnosis, doesn't seem to concern him in the least bit but scares the hell out of me.  They both died in their early 60's, far too young.  I'm just trying to be proactive so that history doesn't repeat itself with my children.

 

angec's picture
angec
Posts: 621
Joined: Mar 2012

Sindy, I hope you are able to get some help with these matters. But if you can't, then go on Smart Patients if you haven't already, and see what they suggest. Some of them doing the boards are doctors or work with doctors. They can help you!

By the way, do you eat chicken? ;)  Have a great weekend everyone! I can breath again for a few months, mom had her scans Monday and she is stable with just one node in her lung!  She is on votrient 2oo mgs.  I am very glad for the options out there now! 

twinthings's picture
twinthings
Posts: 384
Joined: Jun 2013

Angec,

First and foremost, I'm glad to hear your mom is stable!  Hopefully, you all can enjoy the holiday season that, somehow, is upon us.  I can scarcely fathom that Christmas is a mere 6 weeks away!  I guess losing my summer to kidney cancer sure sped up the hands of time, because here we are.  Time to hustle and bustle, preparing feasts, selecting the perfect gifts and decorating, all while never losing sight of the reason for the season.  I'm tired just thinking about it!!

I have never heard of 'Smart Patients' but I will most definitely check it out, thank you!

And, yes, I do eat chicken, occasionally.  But, I'd rather have a thick juicy medium rare sirloin, over chicken, any day of the week.  Why do you ask?

 

Sindy

angec's picture
angec
Posts: 621
Joined: Mar 2012

Thank you Sindy!  Oh, about the chicken, it was a little joke. Since you said you hate all birds! LOL Sorry, i thought it was funny at the moment..  Have a good one!  Hope things work out for you. The year is flying!

twinthings's picture
twinthings
Posts: 384
Joined: Jun 2013

lol, I gotcha!  I do hate all birds, which, probably explains why chicken is not my fave.  Never thought of it till now...the irony!

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