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Did you have any symptoms

Max57's picture
Max57
Posts: 167
Joined: Mar 2015

Did you have any symptoms before your diagnosis....did you notice any changes before your diagnosis 

Shear your story 

Jan4you's picture
Jan4you
Posts: 1325
Joined: Oct 2013

Well, for me, not anything. I did have a midback pain that got pretty intense but Urologist said it was not related to Renal Cancer tumor. My neurologist said it was not related to the condition I was seeing her for, but my Primary said we'll know if it goes away after your surgery. It did go away after surgery.. but it is NOT typical place for kidney cancer.

I had an ultrasound for another issue when they found my tumor.

Be well my friends!

Jan

SFBob's picture
SFBob
Posts: 33
Joined: Mar 2015

Mine was found during a CT Scan for a sore testicle that turned out to be completely unrelated. Very fortunate, as it turned out to be Grade 3, which I believe grows more quickly. Assuming next Monday's follow-up scan (gulp) shows NED, I'll pretty likely have been "saved by the ball".

jason.2835 mentioned something I've also read about: there's a urine test capable of catching kidney cancer very early that has proved itself in the lab and will likely be on the market within 5 years. I suspect it will become a routine test--at least for people 50 and older.

Allochka's picture
Allochka
Posts: 902
Joined: Nov 2014

Absolutely no symptoms for my partner... Cancer caught accidentally while doing abdominal ultrasound for Hep C

Limno
Posts: 24
Joined: Feb 2015

What brought me to the doctor was a severe back ache one night.  It felt like a skewer had entered my left kidney and exited my left testicle.  The doc originally diagnosed a kidney stone and thankfully ordered a ct scan that found both a kidney stone and a suspicious mass on my left kidney

Sheeple
Posts: 19
Joined: Jul 2015

The only symptom I presented with was cachexia, i.e. unintended weight loss, which was a paraneoplastic response to the tumor, and not due to the cancer itself. As such I actually went to a gastroenterologist at first to see if there was something wrong with my stomach or bowels and they found the tumor in my kidney.

a_oaklee
Posts: 516
Joined: Nov 2013

My husband had lower back and flank pain for 2 months.  He saw our doc and we thought he hurt himself lifting something.  He was given pain meds.  One night he had hematuria and went to the ER.  A scan showed a 5 cm tumor.  A week later we saw an rcc specialist and had a ct/pet scan to see if there was cancer anywhere else.  He had bone mets, and one lymph node.  His back had been hurting because his T11 vertebrae had turned to mush.  Their words, not mine.  So he had mets to his shoulder,  hip, head of femur, one rib, one vertebrae.  We are still amazed that it had spread so much with the tumor being only 5 cm., and nothing hurt except his back.  

Phredswife's picture
Phredswife
Posts: 162
Joined: Apr 2014

My hubby started getting angiooedema around his eyes and upper face in early October. He stopped taking inhibace plus.. We had read that pill could cause angiooedema  so showed the doctor photos of his face. He looked like he had been in a fight. The doc gave him bloodtests as he was really tired and kept feeling itchy. He kept getting called in for more bloodtests as he was severely anaemic. He was eventually put in hospital in December for a blood transfusion as it was so low. He spent ages in hospital as the iron levels wouldn't go up and he was losing weight and had a fever. He had about 3 blood transfusions and iron infusions. After a gastroscopy and a colonoscopy didn't show anything they gave him a ct scan and saw the tumour. Before it was removed which didn't happen until 27 Feb he had severe night sweats, flank pain and vomiting every night. He used to sit outside at night in rain storms to cool down.

Jojo61's picture
Jojo61
Posts: 1310
Joined: Oct 2013

Yes, I also had symptoms.

I could feel a bulge on my upper right side, I had flank pain, also very sharp back pains (almost like sciatica) periodically. I had night sweats as well....blamed menopause for that one, but after my nephrectomy the sweats stopped. Since it was on my right side, I believed it was gall bladder.

Looking back, a few years before, my blood pressure got higher and my doctor had a difficult time controlling it. I wish he had thought to look at the kidney then, before it got to 13 cm. to find it.

But all is well now. Stage 3, grade 2 and 2 years in....scans coming up soon! Looking forward to seeing Uncle Ned!

:)

Hugs

Jojo

APny's picture
APny
Posts: 1981
Joined: Mar 2014

My first and only symptom was peeing blood at the airport on our way to Barbados for vacation. Needless to say we cancelled our trip, got our luggage off the plane and went to my PCP. He sent me to a urologist who prescribed antibiotics for what he suspected was a UTI (never had one in my life) but had the wisdom of also ordering a CT scan. Which I almost cancelled since I felt fine by that time. My husband made me go, thank god. And of course they found the 3.4 cm tumor and the rest is history.

MattInVa
Posts: 50
Joined: Sep 2015

Went to the ER on a thursday night for pain in my right flank and blood in urine. They suspected kidney stones but a ct scan found a large mass on my right kidney consistant with RCC. Had a open radical the following Monday, The tumor extended well into my vena cava and renal veins. Tumor was 11cm itself with a few more for the thrombus,Tumor was a grade 4 pT3b pN0, with sarcomatoid features and extensive necrosis in addition I have 11 mets on my lungs spread through all lobes, the largest being 2cm.

I started votrient 5 days ago (800mg), no side effects yet. I monitor my BP and its been steady between 108 and 120 by the afternoon.

 

So far so good, but my the real deal will will be Christmas when mt next scan will determine if if I have been naughty or nice.

BDS's picture
BDS
Posts: 172
Joined: Aug 2012







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I was a patient of a Bucks County urologist from 2005 – 2012.My urologist repeatedly waved off my urinary and other concerns as nothing more than a slightly enlarged prostate. At the age of 45 I felt I should not be having these problems. When repeatedly asked about kidney function he said I was fine. In June 2011 blood was found in my in office urine sample – I was never informed. By 2011 I was tired all the time, I had back pain and was under the care of a chiropractor - none of my doctors connected the dots.

On May 28, 2012 I came home from work went to the bathroom and urinated a lot of blood.  I went to the ER thinking I had a kidney stone. God was I wrong! I was diagnosed with stage 4 RCC and given a poor prognosis.

Lesson learned -“A man with a smile and a handshake could hurt you a lot more than a man with a gun”. - BDS

MattInVa
Posts: 50
Joined: Sep 2015

I am right here with you. with mRCC stage IV and 2 docs gave me a poor prognosis.

jason.2835
Posts: 337
Joined: Nov 2014

BDS,

Was this Bucks County, PA?  Please tell me the name of your first urologist so I can avoid him immediately.  Wow.  Sometimes when you read stories like this you just want to scream, "JUST RUN SOME DAMN TESTS!!!!!!"

- Jay

BDS's picture
BDS
Posts: 172
Joined: Aug 2012

Yes, it was Bucks County PA. My former urologist first name was Drew his last name started with the letter "H" and his practice starts with "Bucks County". You can figuire out the rest.







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When I was diagnosed (May 2012) I had a  11 cm tumor engulfing the entire left kidney multiple metastases to lymph nodes, lungs and a large left para-aortic mass. My surgeon told me "Until I see the pathology report you may not be alive in a year to see your daughter graduated high school". If my urologist had done his job an ordered a kidney scan in 2005 all of this would have been avoid. Being on CSN as long as I have and seeing how many members have now passed on I am truly amazed that I am still alive and doing well. - Take Care - BDS   

 

 

APny's picture
APny
Posts: 1981
Joined: Mar 2014

This makes me so angry I could scream. All it would have taken is a CT or US back when you first complained in 2005. I don't get his negligence in considering it. I'm happy that you're doing well but this just makes me want to shake Dr. Drew and ask him WTF was he thinking. Or not thinking.

Positive_Mental_Attitude's picture
Positive_Mental...
Posts: 454
Joined: Jul 2014

Have you considered suing the urologist for malpractice?  Seems like a pretty clear case. I am not one to sue, if there was ever a situation that merited a lawsuit, yours sound like it.  Doctors like this need to be smartened up.

BDS's picture
BDS
Posts: 172
Joined: Aug 2012

Positive_Mental_Attitude before I answer, I just wanted to state that before I was diagnosed I had no idea what kidney cancer was. I do not have a medical background. I do not even think before 2012 if you ask me to spell renal cell carcinoma I could! I just trusted my doctors.

---------------------------------------------------------------------------------------------------------------------------    
Have you considered suing?

Oh yes, I have pursed this option. My wife and I went to three of the best malpractice attorneys in the Philadelphia area; all eager to review my case. I have in the process learned some bitter lessons about the legal system and malpractice law.
   
    1.    For all their whining and complaining about malpractice Doctors are truly a protected class in this country.

    2.    For a Doctor to be successfully sued in a court of law in Pennsylvania that doctor has to be an “F” Doctor, not a “C” ,not a “D” but an “F” doctor.  A doctor has to commit gross malpractice like cut off the wrong leg or commit fraud against Medicare in order to have a judgment against them.

    3.    In order to sue a Doctor a lawsuit must be filed within two years of diagnosis. At a time when the patient maybe truly fighting for his/her life or scramming to determine the best treatment options suing your doctor and all that it entails is the last thing on the patients mind. Because of this many malpractice cases are never go trial.

    4.    A malpractice attorney will not pursue a lawsuit unless they feel it’s a slam dunk case.  It can cost a legal practice up to $50,000 to try a malpractice case in front of a jury. If your case does go to trial your attorney will settle out of court even if it is for a lesser damages at a drop of a hat. I was told by all three of my attorneys that the last thing they want to do is have a jury trial in the Bucks County PA area. It’s not uncommon in Bucks County to have juries that have strong ties to the insurance industry.
   
My legal case was not accepted based on the following points:

    •    Unlike a gynecologist who must routinely order a mammogram. A urologist is under no medical obligation to ever order a kidney scan. A kidney scan is not legally considered part of “Standard of Care” for urology. This is what I found most appalling!

    •    My medical records were written with just basic information about my office visits. Nothing was ever written down about my concerns about my kidneys. Nothing to prove my urologist was negligent.  

    •    In June 2011 trace blood was found in my in office urine sample – I was never informed.  Not informing me about the blood in my urine was the one legal point that my urologist was negligent. However, because I was diagnosed one year later in May 2012 all the lawyers that I spoke to said the legal damages that could be incurred would be minimal. In short, it was not worth their time to pursue.

So there you have it, my legal options are now exhausted. My former urologist is still practicing medicine and laughing all the way to the bank. I wonder if he even remembers me. As I said before, beware of a man with a smile and a handshake!    - BDS







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APny's picture
APny
Posts: 1981
Joined: Mar 2014

Well, that's certainly sobering. Unbelievable. To me it was gross negligence but I guess by legal standards he was doing just fine. I can see kidney scans not being a routine recommendation but you were having symptoms. You were complaining about urologic issues. So it's not like you expected your GP to order a routine scan when there was nothing wrong. You felt there was something wrong. Oh well. Certainly learned something and it truly sucks.

DonMiller's picture
DonMiller
Posts: 109
Joined: Feb 2013

Most attorneys can not afford to take on a malpractice case. The $50,000.00 advance is an extremely conservtive estimate and no case is a "slam dunk".  I believe the insurances carriers have convinced the medical community with cherry picked anolomies to justify their premuims. 

DonMiller's picture
DonMiller
Posts: 109
Joined: Feb 2013

Most attorneys can not afford to take on a malpractice case. The $50,000.00 advance is an extremely conservtive estimate and no case is a "slam dunk".  I believe the insurances carriers have convinced the medical community with cherry picked anolomies to justify their premuims. 

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

I had flank pain so so my doc thought it might be kifney stone or uti, the blood eork showed something little abnormal(my last blood work was normal three months earlier) so he gave me some drugs and asked for US. I felt better but when went to have U.S the face of technician was frightened. He didn't tell me but it wasn't diffifult to guess what a 10 cm mass is:(

Footstomper's picture
Footstomper
Posts: 1238
Joined: Dec 2014

I will never forget. I woke in the middle of the night and had to go to the bathroom. I stood at the loo and strained a little. Then there was blood, pure blood rather than urine. I remember thinking it was almost funny and "this is so wrong!' I went back to bed thinking that it would be better in the morning and a nice cup of tea would sort it out. I am English after all!. It wasnt better and I went to the dr who sent be to get an ultra sound to find the stones.

There were no stones. There was a shadow. I was sent to get an MRI and referred to a urologist who with admirable honesty told me that he didnt like the like of the growth but it was way beyond his competence and he referred me to a specialist in Baltimore.

After that I was on the RCC conveyor belt

jason.2835
Posts: 337
Joined: Nov 2014

Max,

I was saved by an abdominal ultrasound because of gallbladder problems.  Other than that, I had none of the "classic" symptoms of RCC.  As you have no doubt read, these are the "Unholy Trinity" of flank pain, lump in the back and blood in the urine.  So I was saved by gallbladder and my family doc who wrote "abdominal" rather than "gallbladder" on the prescription.  

SFBob gave me a shout out on the urine test that will be coming very soon... it's simple, cheap and it WORKS and should save a heckuva lotta lives.  

- Jay

icemantoo's picture
icemantoo
Posts: 3255
Joined: Jan 2010

Got mad at my wife for pouring cough syrup in the toilet at first,

 

icemantoo

JoanneNH
Posts: 115
Joined: Sep 2013

Diagnosed with kidney cancer in August of 2013.  That summer I had intense itching all over but especially my back, decreased energy, weight loss, and tachycardia.  Also developed a wicked cough which was my lifesaver.  Nurse practitioner ordered a chest x-ray which showed a pleural effusion.  Radiologist said he wanted a CT scan.  That CT scan of my chest was just low enough to show a 7-cm tumor arising from my kidney.  I still have some itching but never as bad as that summer.  

rjhillcbytwp
Posts: 11
Joined: Oct 2015

Hi JoanneNH,

I've been lurking here on and off since my original DX in April of 2012.  I was training for the Pittsburgh marathon, and started a horrible cough in the middle of a run.  The Cliff's Notes version of my story will be in my profile, once I can figure out how to edit that section.

My only persistent trouble, after a full left and partial right neph, HD-IL2, 12 Months of Sutent, and almost two years of Votrent is the cough.  I can't get rid of it.  My Oncologist and Pulmonologist say that the cancer isn't causing the cough; something about the parenchyma of the lungs having no nerves and therefore nothing to trigger the reflex.  The allergist says "No allergies here!" and the ENT says "Squeaky clean sinus cavities." In essence, every specialty and sub-specialty has ruled out thier area of expertise.  According to the experts, I shouldn't be coughing. 

Oh, but I am.  I'm hopeful that someone on this forum has found a magician or physician that has cracked the code and stopped the cough.  I'm humbly seeking your wisdom and counsel.

JoanneNH
Posts: 115
Joined: Sep 2013

I had a cardiothoracic surgeon friend look at my chest x-ray/CT scan.  He said he didn't think the pleural effusion had anything to do with my cancer and thought I had had pneumonia.   Everyone originally thought the cough was due to my blood pressure medicine until the chest x-ray showed a pleural effusion.

Are you on an ACE inhibitor blood pressure medication?  That can cause a cough, sometimes pretty bad in some patients.

Max57's picture
Max57
Posts: 167
Joined: Mar 2015

joanne

such a consdent I noticed  tow years before my diagnosed I start itching my feet and fingers and it was bad really bad my wife said maybe it's dry skin... after the surgery it's better much bettr but as you said I still have itching.... I don't know if It has to do with my cancer 

 

Positive_Mental_Attitude's picture
Positive_Mental...
Posts: 454
Joined: Jul 2014

Not a single symptom.  Late April 2014, had a bowel obstruction, went to ER, got an ultrasound, and they said in addition to the obstruction, I got a bonus-mass on my right kidney that had to get checked out.  We were in a remote part of Arizona, and they wanted to operate on the bowel obstruction.  I have a history going back to when I was a newborm of intestinal problems.  I checked myself out AMA, flew back home to NJ, went to a first urologist who said I had  tumor that would require removal of entire right kidney.  Early May, I went to Sloan Kettering, found  urologist-oncologist who said he could preserve my kidney, and he did.  Never felt a single symptom.

Dave418's picture
Dave418
Posts: 95
Joined: Aug 2014

For me, it all begun with one side of my chest looking bigger than the other. Talked about that to my gp and he tought i might always had been like that without noticing. I insisted that this was new and getting bigger. He ordered a ultrasound just to make sure and 4 weeks later, my journey begun...

I saw the face of the guy doiing the ultrasound change as he was performing it, he then went away and the radiologist came back to tell me something was wrong with my left kidney and ordered an mri. My gp called me to tell me that he had the results and i had to see the urologist asap as i had a 9.5cm mass on the kidney that looked like cancer. That was confirmed by urologist after a CT scan and the kidney(football sized, uro told me) was removed september 3rd 2014, on the day of my 9th year wedding anniversary. Stage 3 grade 2 renal vein invasion, clear margins.

So it was that kidney that was pushing on my ribs and made my chest looked distort. No other symptoms than that.

Now waiting for the 1 year scan on oct 28th 

Dave

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

Dave,our stories are similar. Mine was also grade two and 10cm and wad found few days before our anniversary. We wanted ti go to a romantic journey but things changed and my husband and I started a tough journey which didn't look romantic at all:) but made both of us more in love. Wishing you NED for your first year scan and many more NED for the comming decades.

Forough

 

rainsandpours's picture
rainsandpours
Posts: 136
Joined: Apr 2013

I had vague symptoms  that I couldn't quite put my finger on.  I was, at the time, being followed/treated for thyroid cancer.   I had mentioned  to my Rad Onc at the time that something was going on with my kidneys.  I'd had strange urinary urgency, some low back pain, and weirdest of all, a skin smell only I picked up on.  Ammonia like.  I asked my family if they noticed it and no one had.

 

Any who. ... that was fall 2012.  In Jan 2013 I had a neck ultrasound  that showed a large thyroid tumor in my upper chest.  The radiologist  recommended  a neck,  chest abdo  CT.  Which I had mid March.

 

The scan took forever,  and I knew something  was up when they pulled me out of the scanner and wouldn't release me until I went for a chest xray.   I knew they saw something.   Rcc was not in my vocabulary.   My GP  gave me the results a few days later.  But I had to do the entire diagnosis circle jerk  before a real diagnosis.  This was late March 2013.  By the time I finally had surgery in Oct 2013, I'd been put through 3 cts,  2 ultrasounds,  2 biopsies and 2 other unrelated surgeries.  

 

Not a simple process by any means.  My 1.3 cm tumor was removed by open partial Oct 15/13.  Small certainly, but I had a mutant renal artery and the tumor was in a difficult spot.  Painful recovery!.  

 

My urologist  forgets he operated every time I see him.  His follow up is shaky.   Ct once a year, but after my next scan in Feb it'll  switch to ultrasound.  

Endpoint- I was fairly in tune with myself.  Had the rad Onc actually  listened  to me, they may have found the Rcc a year earlier.  

 

Max57's picture
Max57
Posts: 167
Joined: Mar 2015

hi there 

you said strange urinary urgency can you be more specific.... Coz I had that urgency before the surgery then gone away 5 months later came back 

Trease's picture
Trease
Posts: 17
Joined: Oct 2015

Rainsandpours,That's funny. I've had this issue of smelling ammonia on my skin now for a couple years. No one has ever smelled it except me. I've told my doctor and he pretty much thought I was nuts too. Maybe I'm not nuts !

dhs1963's picture
dhs1963
Posts: 510
Joined: May 2012

I am always within 15 lbs of my normal weight as an adult.  Over six months, I had lost 20 lbs without trying -- from 260 to 240lbs.  And I was extremely tired.  I was also having a non-descript back pain.  I was happy with the weight loss; as an adult, I have had a constant struggle with weight.  But, the tiredness was getting to me.  Every day, I would need to rest in the afternoon -- I could not work a full day. I was going to talk about this to my doctor.  I had already talked about Kidney Cancer, since it runs in my family (father and grandfather), but he trivialized my concern saying that RCC is an environmental disease.  I should have sued him for my kidney.

 

(when my sister was diagnosed BRCA +, he refused to refer me for genetic testing; this was before the cancer diagnosis.  After the cancer diagnosis, he yelled at me about not following his advice, and getting the genetic testing, until I came back BRCA+; however, he refused the enhanced survaliance that was recommended.  I fired him, and filed a complaint with the state only when I came in for crushing chest pain at 49 and he had been treating me for cholesterol for 15 years.  He sent me home with Prilosec for GERD.  A week later I was unable to talk ten feet and it turns out I had a 98% blockage of the LAD.).  

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

You did the right thing to fire him

rainsandpours's picture
rainsandpours
Posts: 136
Joined: Apr 2013

Re: strange urgency;

 

I was having to pee quite often and usually didn't realize it until I was running to the bathroom.   Never felt that

 ""full" bladder feeling we are all used to creeping up.  Almost had an accident or 2.  I eventually  mentioned  it also to my GP.   She sent me for a UA  but it showed no infection.  

 

I'm keeping that experience  as a trigger should it happen again.  

Asphaltcowboy1962's picture
Asphaltcowboy1962
Posts: 2
Joined: Oct 2015

I went to the ER with left side pain.  Mine was found during a CT.  The pain in my side was related.  I had surgery with three weeks.

Brian

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