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Why didn't they tell me?

MeMeJoy
Posts: 68
Joined: Apr 2013

I guess I’m just scared and looking for some advice. A little background: 3 yrs ago my urologist ( I have intercystial cystitis) found a small 2~3 cm mass in the upper pole of my left kidney. At first the CT indicated that it was indeterminate so he had me go in for another CT 3 months later. At that time he said he was very confident that it was a simple cyst - nothing to worry about. So I didn't worry, life went on yadda yadda... Every once in a while I have back pain but never really thought much about it especially since i also have IC.

Fast forward to Sunday. I had severe flank pain and blood in my urine so I went to the ER. They did a CT. The ER doc came in and said, 'by the way you have a mass in your left kidney did you know?' I said, "Yes, they found it 3 yrs ago, but how big is it?" He said, " about 2.5 cm". I said "Ok so it hasn’t changed any…cool." I was sent home with some pain meds... Monday I was looking over my ER paperwork and found the CT report, which states that I have a"... 8.7cmx6.7cm lesion... that has heterogeneous linear areas within it likely multiloculated lesion left kidney mid pole lateral cortex with internal areas of increased density. Further evaluation with a dedicated MRI with contrast is recommended to evaluate this area better."

Why wouldn't the ER doc have told me what was actually in the report? And why wouldn't they have done the MRI as recommended? I’m so frustrated about the whole thing!

I made an appointment with my Urologist for Friday, but I’m not really sure what all to say. I just had a CT so I don't want to play another round of wait and see. Am I getting all worked up over nothing? Is a ~5cm growth in 3 yrs normal?

Any advice would be greatly appreciated!!

 

 

augello55
Posts: 12
Joined: Mar 2013

No excuses...wondering if the ER doc assumed that because you knew of the cyst...that you were being monitored?   Like I said...no excuse for him to not tell you to see your urologist..or order the mri himself      Make sure you get the ct scan from er and bring it with you along with any other reports from the er doctor.

icemantoo's picture
icemantoo
Posts: 1654
Joined: Jan 2010

It seems to me at 2 or 3cm you are at the upper end of wait and watch. With wait and watch you can not go 3 years with waiting alone. Also it seems to be growing at a rate greater than normal.

 

With all that behind you you need to see a urologist specializing in Kidney Cancer because you are probally looking at a Nepherectomy in the near future. Even at 6 or 8 cm you should be able to have a full recovery. Hopefully from the surgery alone.

 

 

I know that the last thing you want to do is join our club, but we have all been through it. Hearing that you have Cancer and that you need major surgery is not fun. It was not fun when I heard it.  Mine was almost 11 years ago and I am doing fine. My neighbor Faye accross the street is at 18 years and she is only 82 and going strong.

 

Many in our club start with more baggage than you so you are still relatively lucky in the sceme of things.

Icemantoo

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

It sounds to me as if there's something very wrong here!

Based on what you've said there is a major conflict between the written report and the account you were given by th ER doc, both about location and about size.  The first thing I'd want to do is verify that someone hasn't slipped up and given you the wrong report.  If that's not the explanation, then there are significant ramifications.

It's not usual to get an instant report on a CT scan.  You had the scan on Sunday and you were looking at the paperwork the next day?  It sounds to me like you were given the report on another patient!

It almost certainly wouldn't have been possible for you to get an instant MRI scan while you were there.   That would have to be set up and I would guess you'd have to wait some time for it.  Where are you based and where are you treated?  Are you in the hands of a urologist expert in renal cancer?

 

AprilandChuck's picture
AprilandChuck
Posts: 104
Joined: Feb 2013

We get same day reports all of Chucks scans are done on site..so the results of his scans are usually available within a few hour. Its set up that way because a lot of people travel a pretty good distance to go to these doctors..

foxhd's picture
foxhd
Posts: 2059
Joined: Oct 2011

Not so unusual to get report on results while still in ER. I got mine in probably less than an hour. Bad news travels fast. But secondly, and this is what bothers me is that the ER doc presented information to you and once you acknowledged that you were aware of a mass he was able to just leave it. He felt his job was done with no need for follow up. Someone elses problem.  So you now have to follow through but that is OK because you will have much more information when you choose your next doctor. Keep us posted.

MeMeJoy
Posts: 68
Joined: Apr 2013

This is what bothered me too, and the fact that the info he presented in the ER to me was simply incorrect. So...I know you guys aren't doctors....but...everything I have read points that this thing probably is cancer....??? And even if its not that it needs to come out - I want it out!! Im so tired of dealing with this! I go to my Uro tomorrow, anything specific I need to ask? Demand?

MeMeJoy
Posts: 68
Joined: Apr 2013

Yep! MAJOR Conflict!! lol As far as I can tell the report is mine - It has my name on it and the time that I went in to have the CT. I had everything done in the ER and left at midnight hopped up on dilaudid + pther meds so when I got home I went to bed. I looked through all of the paperwork on Monday, Asked my husband what size the ER doc said the mass was to make sure I was remembering correctly, and I was, that when I started getting mad and antsy.

I am outside of Atlanta, so if I don't like what my urologist says tomorrow, I have many options Smile

MeMeJoy
Posts: 68
Joined: Apr 2013

Sorry - didn't mean to double post and don't know how to delete...only edit! Also thought I was replying specifically to individual replies - ill do better next time I promise Innocent

But while I'm here - Thanks for all your responses!

It's such a crazy thing to have to go through... especially the whole not knowing part. My grandmother passed away at 50yrs old in 1993 (I'm 32 which is one reason I think no one has taken me seriously throughout this) of RCC. They found it when she was 48 and said that she had had it, symptom free, for at least 5 years prior to that.

Thanks again!

foxhd's picture
foxhd
Posts: 2059
Joined: Oct 2011

You learn fast. You are in charge of what goes on. Be well equipped going in to see the Dr.  Yes you do have options.

foxhd's picture
foxhd
Posts: 2059
Joined: Oct 2011

You learn fast. You are in charge of what goes on. Be well equipped going in to see the Dr.  Yes you do have options.

AprilandChuck's picture
AprilandChuck
Posts: 104
Joined: Feb 2013

Your Family History alone should have made everyone stand up and say awwww we need to investigate this further!! Yes Atlanta has wonderful Oncologists and Doctors.. if you don't like what you hear find another.. if you are not sure where to look call Cancer.Gov they will have a listing for your area...Praying for you.. Hugggsss

etrainor's picture
etrainor
Posts: 8
Joined: Dec 2011

I'm so sorry this happened to you. I hear so many stories of misdiagnoses with Kidney Cancer. But your case sounds like negligence. I'm surprised your original urologist did not follow you and the ER doc sounds like he miss read your scan results. I'm not a doctor, but if you were having symptoms and blood in your urine, chances are your tumor is larger than 2.5 cm. I would get a good recommendation to a urologist affiliated with a top hospital in your area. Good Luck, I hope and prayer for good results and care. Keep us posted, we are here for you.

ddantzler's picture
ddantzler
Posts: 21
Joined: Apr 2013

I would second this opinion, particularly since you stated that your grandmother passed away at an early age due to RCC. The original urologist should have done more when the tumor was 2.5 cm! 

You'll be in my thoughts and prayers.

dhs1963's picture
dhs1963
Posts: 394
Joined: May 2012

They will talk to you about familial RCC.  They may even want you are part of there study.  They have a great medical staff.

 

Contact is Lindsey Middleton.  If you google Lindsey Middleton NIH, you should het her contact info.

 

Good luck

 

(Familial RCC here:  Father, grandfather and me).

Gale_50's picture
Gale_50
Posts: 17
Joined: Apr 2013

Your experience was a horrific lesson that I have also learned, however with less scary consequences. That is, self advocate your care, assume nothing about follow up truly being handled. You are now however on the most wonderful site for support, compassion, information. We of course want to trust and think the best of others, but not at the expense of best possible care and solutions. It sounds like they will be caring well for you now, and of course you are scared. So many stories here to assure you that others have been just where you are and are doing great, if not better than ever due to awareness of what truly matters. So may I offer my prayers and my shoulder....I am early in the game also and like you, feel should have been diagnosed much sooner. But we are now, friend so let's carry on with purpose to see the good and positive that surrounds us. (Will be hard at times). I hope you have a great support network at home!     Blessings, Connie 

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