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Waiting in secret

Wellkept1
Posts: 2
Joined: Jul 2018

I am a new member to the board, but I have not received a diagnosis yet.

 

I was diagnosed with my first kidney stone 10 days before my wedding.  I had complained about pain in my side for months leading up to my wedding, but my GP at the time told me that I must have pulled a muscle or some other silly conclusion.  It was only after my urine turned the color of cola before he sent me for a CT Scan that showed a large stone.

 

I continued to suffer for the next four years with flank pain and gross hematuria.  I had 4-5 kidney stone operations because that is what the urologist thought was causing the problems.  I had CT Scans and KUB at least twice a year during this time.  I was told in the ER that I must have passed a stone without knowing it when I complained of pain, but my scans came back clear.

 

Fast forward to last week and I had my first ever renal ultrasound.  This was done because I still had pain after recent kidney stone surgery.  The ultrasound found a hypoechoic lesion in the midpole of my kidney.  The report stated that it is less likely a renal mass and probably a prominant kidney lobulation since the recent CT Scan w/o contrast did not show it.

 

My urologist requested that I have a CT Scan with contrast to gather more information.  He told me that I was too young (37) for kidney cancer, but he wanted to gather more information.

 

I believe that whatever is in my kidney has been there for awhile.  I think the kidney stones were a coincidence and I am kicking myself for not inquiring about a scan with contrast earlier.

 

My insurance company has been slow to approve the new scan, so I've been impatiently waiting in pain.

 

I haven't told my husband, family or friends because I don't want to freak them out before I have a diagnosis.  However, it's hard to keep this to myself and wait for answers.

 

I am glad that I found this board with all of it's information and positive members.

icemantoo's picture
icemantoo
Posts: 3195
Joined: Jan 2010

Wellkept,

 

Get the CT with and without contrast. That is the Gold standard for detecting Kidney Cancer. Thirty Seven is not too young to have Kidney Cancer. You may very well not have Kidney Cancer. Share this at least with your husband. Let us know how things go. Think about a second URO opinion since your history is not typical and we laymen would just be guessing. Sending good karma to get this behind you.

 

icemantoo

stub1969's picture
stub1969
Posts: 776
Joined: Jul 2016

Ditto to what Iceman said.  Whether it is or not, this is a big deal and you should not have to travel this journey alone.  Let your hsuband know---I'm sure he will be a wonderful support.  

Good luck!

Stub

Manufred's picture
Manufred
Posts: 225
Joined: May 2017

Oh secretive one,

This stuff is hard work on your own.  It will help you to share with a sympathetic ear as you will probably invent all sorts of scenarios that may never eventuate. 

Just chil and work on getting a correct diagnosis. And ask questions - don't just accept whatever they say.

Best Wishes,

Fred

Hoss79's picture
Hoss79
Posts: 78
Joined: Nov 2017

Exactly what iceman said. I was 37 when my kidney cancer was found. There has been several members join lately around that age. Cancer doesn’t care about age. It can happen to anyone at anytime.

Retcenturion's picture
Retcenturion
Posts: 240
Joined: Mar 2017

Your going to need the information of the scans. Become " That Patient", to the insurance company if they resist the imaging. They don't care about your health only a monetary decision. If it turns out to a benign situation that's the best outcome. I would enlist your husband. Your going to need a second set of ears when visiting these medical personnel. I couldn't imagine going on the visits without my wife. Sending positive thoughts your way and a quick answer for you.

 

 

Glidergal365's picture
Glidergal365
Posts: 93
Joined: Feb 2018

I was 39 when mine was found incidentally. We waited 6 months after it was found last July because the Urologist dismissed it as probably not being anything. Only reason we did the 6 month scan was because the radiologist recommended it. It grew 1.5 cm in 6 months. Even then it was almost 7 weeks before I had my kidney removed and then found out it was cancer. He was "surprised". I didn't tell many people until I knew it had to come out. Then I rallied the troops. It's hard for me to share with others medical stuff too so I get it, but my boyfriend has been a solid rock for me through all of this. You need at least 1 person who can help you sort through the emotions and go to appointments with you. My day job is a Community Health Worker so I am usually that person going with folks to their appointments and advocating for them. As a patient I found out just how valuable that role is. We are here to listen as well, use the boards, there are a lot of amazing people who get it.  

Bay Area Guy's picture
Bay Area Guy
Posts: 377
Joined: Jun 2016

Ice has it absolutely right.  I can't begin to tell you how much of a rock my wife was throughout my diagnosis and treatment.

todd121's picture
todd121
Posts: 1422
Joined: Dec 2012

I wouldn't jump to the conclusion you have cancer. Wait for the contrast CT to know more, but I'm not sure they'd miss it without contrast if it was s tumor. You didn't mention if you're seeing a regular urologist or a urologic oncologist. Might be worth seeing a urologic oncologist for another opinion (like what Iceman said).

Tell your spouse if you think he'll be suportive. You need support. If you can't tell him (I know not everyone is married to someone supportive) I hope you have another close family member or friend or maybe church or spiritual leader you can confide in for support.

And let us know how you are doing and what the outcome is. We are pulling for you.

Todd

foroughsh's picture
foroughsh
Posts: 775
Joined: Oct 2014

I hope it's not cancer, the waiting is the hardest thing. It's good to have a second opinion on your previous and new C.Ts and discuss it with a well experience urologist oncologist.

Don't keep it to yourself,it takes your energy and strength, share your thoughts and feeling with someone who is trustworthy and supportive.

Sending you calming vibes

Wellkept1
Posts: 2
Joined: Jul 2018

I finally had a ct scan with and without contrast today.  There was a delay because of some kind of issue between my insurance company, urologist office and radiologist location.

 

Tonight will be rough as I wait for the morning to pick up my results.  I will update when I have more information.

 

Also, I reached out to some loved ones about what is going on and they have been very supportive.

Bay Area Guy's picture
Bay Area Guy
Posts: 377
Joined: Jun 2016

Best wishes for a good report.

yellow lotus's picture
yellow lotus
Posts: 15
Joined: Feb 2018

I agree with everyone and am glad you told someone you feel safe with sharing the info. Until todd121 contributed to this post it never occurred to me not to encourage you to talk with your husband. Please let us know what you find out. I'm praying for you and your family.

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