Did you have any symptoms

JoanneNH said:

Diagnosed with kidney cancer

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.  

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.

rjhillcbytwp said:

Wicked cough saved me too

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.

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.

BDS said:

The Doctor Who Dropped the Ball

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.

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   

 

 

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.

Positive_Mental_Attitude said:

Have you considered suing the

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.

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

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.  

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.).  

BDS said:

Have you considered suing?

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

 

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. 

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.  

rainsandpours said:

I had vague symptoms  that I

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.  

 

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 !