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Newbie update

J_B's picture
J_B
Posts: 17
Joined: May 2013

So as I explained over the weekend, I found out my results by going and picking them up since my doctors office wanted to call at 3:30 on a Friday of a long holiday weekend.

So I was able to talk to the girl who left that message and she was like "yeah, I left you the one message telling you your films were fine, but then got to the next report and realized I needed to call you back" - Mind you she never left a message that my hip/leg xray was good.

Then she goes on to say that they found something on my kidney that they need a better picture of, no big deal.

I said hmmm "ON" my kidney really? Yup...Oh, because I went up and got my results and it shows it is IN my kidney. "ohhhh". 

I then said and it also shows I have a 1.5 cm gallstone...."ohhh?"   --Like she didn't know what to say that I already had my results! Couldnt' back track fast enough.

 

Later, I angrily  call back and leave a message that I want to speak to the PA.

So at 5pm last night she calls and tells me that they need me to have a CT scan because they need a better picture. There is a spot the size of a "PENCIL ERASER" that they need a better look at!...........I said oh really??  So the report I have in my hand from the imaging place is wrong??? Because this report shows it's a 4cm x 2.5 x 2.5 IN my left upper kidney".   Oh...yeah the size of an eraser she says. ----suddenly NOT a pencil eraser!

She has now ordered not just the CT Scan for my kidney but also a HIDA scan for my gallbladder. (which will also show liver function) 

 

This internist office in the middle of snow bird heaven here in Arizona, so I'm not sure if they are just used to dealing with older people and sugar coat things so they don't get all worried and freaked out or what, but I am not appreciating it when it comes to my medical needs.  Am I just being over sensitive to think they should not be LYING to me about my results and why I have been ordered to have a CT Scan of my kidney mass? Did anyone else initially go through this?

I do believe I will be picking up my very own copy of the CT Scan Report and the HIDA scan report too! 

rainsandpours's picture
rainsandpours
Posts: 124
Joined: Apr 2013

Sounds like the usual doctor's office runaround/minimization.  Very frustrating for sure.  The good news is you are armed with information, so it's not a surprise.  The CT order is SOP- it's the best way for them to decipher what they see.  Don't know why they're ordering the HIDA though.  That's usually done to check for cholecystitis (gallbladder disease).  You have stones- that's pretty cut and dried.  I just had that surgery 3 weeks ago for stones, but my Path report also said I had chronic gallbladder disease.

 

As for the skeptical measurements:  Ultrasound isn't an exact science.  It's operator dependent, so I'd be mroe likely to trust the CT result.  For example:  when they first found my thyroid nodule (cancer), both ultrasounds said it was between 3.5-3.7 cm (still huge when it's on your throat).  Turned out after surgery it was 6.4 cm.  Twice the size.  Who knows what those techs were smoking to get it so wrong?

 

Anyway, you've come to the right place for support.  Best wishes to you.

icemantoo's picture
icemantoo
Posts: 1622
Joined: Jan 2010

J_B,

 

Ho[efully it is nothing and you can get on with your life. If it does turn out to be something we will help you thru it as we are required to have been there and done that to join our group.

 

Icemantoo

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Agreed about J_B iceman but not about this club - do remember that there are some here who are highly valued members who haven't 'been there and done that', except by proxy, e.g. Alice.   We don't want to suggest to any possible participant that caregivers aren't equally entitled to be here, now do we?

icemantoo's picture
icemantoo
Posts: 1622
Joined: Jan 2010

For the record,

 

Been there, done that includes caregivers.

 

Icemantoo

alice124's picture
alice124
Posts: 877
Joined: Mar 2012

You’re kind for worrying Tex, but I assure you the  “no harm no foul” rule is in place for me. Can’t get rid of me that easily. . .

MDCinSC's picture
MDCinSC
Posts: 574
Joined: Feb 2013

Thank goodness!

I'd have no one to discuss the Bromo Seltzer Tower or Lexington Market with! Laughing

Seriously, you've been gracious, helpful and kind to all I've seen you respond to.  Blessings!

Michael

Djinnie's picture
Djinnie
Posts: 866
Joined: Apr 2013

I think the whole sequence of events was appalling, very unprofessional, and showed little regard for a patients welfare. There seemed to be a total lack of sensitivity and disconnection, creating a very stressful situation for you.

I have refused to have any more ultrasounds during check ups. In my experience the results are definately dependant on the skill of the sonographer. I had been having regular check ups for several years after my first kidney cancer. My scans always came back clear, it was only recently that a CT scan showed evidence of a tumour which was over 4 cm. It could be clearly seen on the top of my kidney, looking like a finger indicating a 'this way up' sign. 

When presenting this information to my Doctor, he was somewhat taken aback. He stated that many sonographers do not have enough experience in interpreting ultrasounds. He of course would only go to a major medical centre like Lorient or Paris. The mind boggles at that bit of information. I enquired why he hadn't recommended one of these centres when arranging my scans. His response was 'I understand, I am not your hero', I replied ' You don't come close'. I was even struggling with the use of the first two letters in that particular word to describe him at that point.

In my experience a CT or an MRI is much more reliable and obviously more definitive. We do have to remain pro active in our health care, all too often the medical services drop the ball.

All the best

 

Djinnie

Galrim's picture
Galrim
Posts: 278
Joined: Apr 2013

On top of the strain and stress by facing an unknown medical condition, having to deal with incompetent medical staff is the last thing you need right now.

Unfortunately, in my experience, the only answer is to confront them with their shortcomings to get them to focus and exercise a more professional approach to your case.

/G

MDCinSC's picture
MDCinSC
Posts: 574
Joined: Feb 2013

Galrim,

you have hit the nail on the head.  I would document your complaints as well. Perhaps a  logbook.

Nothing like the perceived threat of malpractice to get people to pay a little more attention.

What can it hurt to demonstrate you are keeping records of their inefficiency!

That's my two cents worth anyway!

J_B's picture
J_B
Posts: 17
Joined: May 2013

Thanks everyone for the input. I wasn't sure if I was being overly sensitive to the situation or not.

As of yesterday afternoon my insurance company hadn't approved the CT scan yet. I'm suppose to call back later today to see if it's been approved, if not we'll have to cancel tomorrow mornings appointment.- Am thinking I may call the insurance company myself and explain that I have an appointment tomorrow and don't want to have to cancel it. (not that it will do any good but it it may help me feel like i am doing "something!" )    :)

 

 

 

rainsandpours's picture
rainsandpours
Posts: 124
Joined: Apr 2013

Crossing finger, eyes and toes for you that they approve it!

 

The only good thing about Canadian health care is we don't have to wrangle with insurance companies.  Everything is approved once ordered... just takes so dam long.  I lived a few years in the US and it astounded me how complicated getting approvals were.

J_B's picture
J_B
Posts: 17
Joined: May 2013

Have I mentioned that I am not a very patient person?? ;)

One week to the day after getting the news of a 4cm renal lesion....my CT Scan is now done...with only mild frustration.

They told me my appointment was 10 am but to be there at 9:15. so I was.

Finally at 10:00 -while still sitting in the waiting room I asked why they had me come in at 9:15. The lady said...your appointment is at 10. I said yes, but you told me to come at 9:15.

She said "ohhh I hope you were not suppose to drink the contrast at 9:15, I questioned it but then figured no". So as she's looking through script in her computer, she's like nope they don't want you to drink it so I'm not sure why you were told to come at 9:15! UGH.

Within 5 minutes they took me back and got me hooked up to the IV --it popped out once getting the sticky contrast all over my arm and sleeve, but at least I can say it is done now!

Now we wait.....over another weekend..... 

Let me share my quote for today with you all:

"Fear of the unknown is your worst enemy. Knowledge is power. 
Time to go get my power!!"

 

Happy Friday!
~Quote by ME! =)

garym's picture
garym
Posts: 1651
Joined: Nov 2009

Waiting, it seems, is always worse than the actual event... try keeping busy to the point of near exhaustion, time passes faster and your imagination doesn't get a chance to run wild...or plenty of alcohol works tooTongue Out

MDCinSC's picture
MDCinSC
Posts: 574
Joined: Feb 2013

I'll have my Lagavulin in the rocks!

J-B, while you're waiting, realize that worry amd anxiety can do nothing to help.  Believe me, I didn't take that advice myself. I wish I had because I spent days-weeks with my stomach in a knot.  It did not serve me any good, only anxiety and depression.  You've done all you can up to this point. Live your life until you hear, then deal with it.

Pax vobiscum

Michael

 

garym's picture
garym
Posts: 1651
Joined: Nov 2009

Got a date with my mom tonight anything more than a short beer gets me scolded...she's 85 and fiesty as ever...gotta love it!

J_B's picture
J_B
Posts: 17
Joined: May 2013

And LOL Gary!  You'll just have to order them ahead and when you see the waitress coming over with one, get your mom to look the other way at something or hopefully she has to use the restroom! (or take her glasses off??) ;)

 

The guy that was putting the needle in my arm for the scan was cutting up-quite the jokester, then asked why I was having it done, said he hadn't read my chart (he's just the helper)...I told him renal lesion blah blah blah....he says, "Yeah ultrasounds show all kinds of specs of dust....we'll take a look and get you taken care of" like- don't worry ultrasounds can be wrong.

When he came out he was a bit more serious .........but there i go probably reading into things  looking for signs of what they MIGHT have found/seen/confirmed.

UGH. Monday or Tuesday is a long way away for waiting for results. Maybe i should just drink all weekend! LOL

 

 

Galrim's picture
Galrim
Posts: 278
Joined: Apr 2013

We had no idea. Im shocked by that revelation :-D

its going to be a long weekend, hopefully your worries will turn out to be unfounded, and all of this will be just a minor speedbump on the road of your life.

Some long walks, good company and a lot of deep breaths, to pass the time, is the best advise I can give.

/G

icemantoo's picture
icemantoo
Posts: 1622
Joined: Jan 2010

J_B,

 

Unfortunately the techs as part of their job can not disclose what they think the CT shows as that is reserved for someone above their pay grade. That was the case of my initial CT scan. Wwhen I saw the pictures from the CT at the doctor's office the tumor on top of the kidney was so distinct that a 3rd grader could see it. Hopefully in your case it shows nothing.

 

Icemantoo

alice124's picture
alice124
Posts: 877
Joined: Mar 2012

Gary - How 'bout sending a live feed of your "date" for the rest of us? I'm sure it would be great entertainment. It heartens me to know someone can control you GARY! Enjoy and give mom our love.

alice124's picture
alice124
Posts: 877
Joined: Mar 2012

J_B.

You’ve had some pretty shabby treatment, but think positively.  Hopefully—come next week—the worst will be behind you.

Not being morbid, but I personally love Tim McGraw’s song,  “Live Like You Were Dying”, and I’ve played it many times when I find myself worrying about tomorrow. It’s a great reminder  to embrace each and every day and live it to its fullest.   How ‘bout some “sky diving or rocky mountain climbing”?

 Wishing you nothing but good reports here on out. . .

J_B's picture
J_B
Posts: 17
Joined: May 2013

Thanks Alice for the encouragement and well wishes.

Anything Tim sings will definitely help! lol

Judy

dme59's picture
dme59
Posts: 61
Joined: May 2013

J_B

When I had my second scan the iv for the contrast came out of the vein but not my hand and as a result an estimated 15cc of that stuff went into the tissue of my hand. Hurt like heck for several minutes then had some significant swelling in my hand. So much so that I couldn't make a fist.

Anyhow, I am down to waiting to get through another weekend. My surgery is this coming Wednesday and the doctors in charge of my care have been extremely optomistic over the outcome which is very mind settling for me. That assurance and the knowledge I've gained on this website has helped with my dealing with the quote you posted.

Dan

 

J_B's picture
J_B
Posts: 17
Joined: May 2013

Dan, I can only imagine this uneasy - impatient feeling that I currently have waiting on these results are magnified immensly sitting in your shoes waiting for surgery next week.

Once the initial procedure is over (and grogginess) you'll be able to breathe a sigh of relief that you've kicked that Cancer to the curb!! I've only known I have this thing in me for exactly one week....and this whole week it feels like there is a grey cloud over my head. Can't wait until that cloud is lifted!!!

I agree with you about this website helping. To hear other people share what they've been through, are going through, what we can expect- it truly does help.

Good luck to you next week! I'm sure you will prove your doctors right! Go kick that Cancer in the butt!

Judy

foxhd's picture
foxhd
Posts: 2022
Joined: Oct 2011

Patients all have a different idea of how medical personnel should treat them, and share information with them. As for Doctors,  it has to be clear up front at all times what expectations one has. Even with cancer. Unfortunately, as you will read over and over, too many doctors are not aggressive enough. Doesn't matter if it is your primary, an oncologist, or radiologist. Most here have to go through the song and dance with several doctors before they get to the renal cell specialist. Then everything changes. By a lot. Be glad you are asking these right questions. Until you find the right caregiver, there can be much frustration. Sorry you have to ask. You should be out having a good time with friends and family. I guess there is a change in what interests you. Happens to all of us who post here.

GSRon's picture
GSRon
Posts: 1306
Joined: Jan 2013

My first post op CT Scan... yes I remember it well...  I too had Scan Anxiety... so I asked the Tech.. he promptly told me he could be fired if he gave an opinion...  So they are supposed to have a Poker Face...   That said, I did have one Tech give me a thumbs up sign...   Yes the wait can be make you a bit nervous.. just a bit.... 

Be Well All...

Ron

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