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newly diagnosed on 1/28/14

kerrie75's picture
kerrie75
Posts: 20
Joined: Feb 2014

Hello, Everyone

So I was diagnosed with type 1 papillary renal cell carcinoma in my left lower pole. They are going to do a robotic laparoscopic partial nephrectomy on 2/12. I feel very comfortable with this. My problem is this. This past July I was admitted in the hospital for over 2 weeks for E Coli 157, which is a deadly strain to get. I was put on dialysis, plasma and even had blood transfusions. They did 2 CT scans. One at the hospital I was originally at and second was the one they transferred me to. So while discharging me after all those weeks they gave me a copy of my records from the hospital stay to give to my neurologist, which I did. He gave them back to me. So over Christmas I was reading through them. The neurologist on call that weekend, so literally saw him for 2 days. He put in his notes that I needed to be followed up on the mass in my kidney. So no one followed up with me! Not the other neurologist that took over while I was still in the hospital, or the regular MD that was taking care of me. Not even the neurologist that I was transferred to after I got out of the hospital. Not even my primary Doctor. I shouldn't had have found it, should I? Sorry, this irritates me. I work in a medical clinic so it makes me think if other people's diagnoses that are being missed. I know it's a slow growing tumor, but I'm a stubborn person about complaining about pain or anything. Who knows how long that tumor would of stayed in there.

danbren2's picture
danbren2
Posts: 204
Joined: May 2013

 

 

Kerrie,

   In 2005 I had my gall bladder removed and when I went back to my surgeon to have my staples removed she, very non-committal told me to have a mass checked on that was found on my right kidney.  Then went on to immediately speaking about something else.  So by the time I left here office I had forgotten all about what she had so easily mentioned about the mass.  I do take full responsibility for not follow up on that remark, but I believe like you do, why was I not immediately told to go to an oncologist or given more information about what was found?

   My kidney cancer was found 6 years later on August 3, 2011.  At this time it had also caused pulmonary embolism in my lungs, the cancer had spread to my adrenaline gland, and started to grow in my vena cavity (not sure I have the terminology right) but I know that is the main blood vessel to the body.  My surgeon removed the right kidney, right adrenaline gland, and cleaned and scrapped the vena cavity as best he could, it was now a waiting game to see what else was going to happen.

  In March 2013 I had to have the lower portion of my right lung removed, and in November 2013 I had to have a small 1.1 centimeter brain tumor removed.  I guess what I am trying to say, I am not laying on the blame on my Gall Bladder surgeon, she did mention it to me and I did nothing.  But I do believe that it should have been her job to say, "there is a mass on your right kidney that may be cancer, do not wait to have it looked it! Now we all know the minute we hear the word cancer, every Doctor will then have their patient’s undivided attention.  Yes, I think Doctors have a responsibility to make sure that once a mass is seen, to make sure the patient is told about it immediately, and to let them know, it is cause to worry and do not put up see a Specialist to make sure everything will be taken care of at the earliest possible time of diagnoses.

   I am glad you have caught yours and that you will get the medical attentions ASAP that you need.  I am doing wonderfully right now and I am scheduled for MRI and CT scan on Feb 7.  I always post my results here, because these people are such a part of my family and strength now!  Best of luck to you!

                                              Love and prayers of good health

                                             Brenda

 

 

 

foxhd's picture
foxhd
Posts: 2066
Joined: Oct 2011

uncommon. I had a cholecstectomy just a couple years before my cancer diagnosis. Considering the rate of growth of my tumor, someone should have seen it and did something about it way before I ended up in the ER with hematuria and pain. That bugs me but I try not to think about it and I don't cast blame. What is important is that I am well and you will be too. You've found a site with compassionate people who understand what you are going thru. However, I get the sense that you are another of the Cancer Survivors Network sub grouping of the "Tough old Broads Club." It is good that your surgery is coming up quick. You'll be in fine shape for spring.

kerrie75's picture
kerrie75
Posts: 20
Joined: Feb 2014

Your right I feel like I have found a wonderful group of people! Thank youLaughing I'm trying not to cast blame but when you work in the medical field it's hard not to! It's not just about me but for everyone else who has and will go through this. Mine's ok because we caught it in time it's only 2cm. Granted it protrudes outside of kidney as well. I just feel sorry for the ones that gets found in the late stages. Ok....... enough, on a brighter note. Your right I will ready to go for spring! Which I most definitely need right now.... living in WI is making hate the colds and the white stuff!!!! I'm am glad your well!

kerrie75's picture
kerrie75
Posts: 20
Joined: Feb 2014

Thanks Brenda,

 

I am so glad you are doing so wonderfully. I will wish you the best of luck and good news on your MRI and CT scan on the 7th. I'm very grateful that had the chance to first have my records and second to know what to look for. I have to say I will be happy when it's over with!  

Thanks again for your support! I guess it has only been 4 days now since I found out the diagnosis. Still getting use to the word cancer.

 

Kerrie

Jan4you's picture
Jan4you
Posts: 235
Joined: Oct 2013

Brenda.. that is an amazing story with lessons to be learned for sure!

Sorry for ALL you have been and are going through!

Gentle hugs!

Jan

 

 

Jan4you's picture
Jan4you
Posts: 235
Joined: Oct 2013

Kerrie, I want to welcome you and validate that it is scary how mistakes or poor follow through can lead to serious issues. Yet I feel, something lead you to read that report and follow  up.

I do not call that a "coincidence" that you were drawn to read that report, but that is my belief. And do you mean you saw a nephrologist for your kidney issues in the hospital and not neurologist? Just curious why a neurologist would be treating you in the hospital, unless you had neurology problems too?

Now did you report this error? Trust me, when a hospital/clinic/office finds out someone made an error, esp as serious as yours, and did nothing it WILL sting and keep them in check for the future. So report it with a letter to the Medical director. And when you get those post discharge surveys make sure you fill it out as well. Trust me, it gets their attention.

I had three different radiologists eave out  or report wrong information.  Two of them stated the wrong kidney, then one said the right kidney was unremarkable then in the next sentence stated there was this mass and described it. Only it was the left one. One said both kidneys and left me totally confused.

Luckily I have a friend in medical records who said there is a form you fill out to have the reports changed and the radiologists are then notified. But I didn't have to because after telling the Urologist who was doing the surgery, he already took care of it. He was not happy with them.

These are lessons we must learn and how we advocate for own health and well being.

I had two robatic surgeries with little to no pain, just some soreness. I had more problems with side effects from ALL the opiates/narcotics I was getting with now only 1 kidney to metabolize the meds. So if you are on any meds on a daily basis, go over them with your treating physician. It changed my whole life but I have several chronic conditions.

Good luck! Let us know how you're doing.

Warmly, Jan

 

 

kerrie75's picture
kerrie75
Posts: 20
Joined: Feb 2014

Sorry Jan,

 

Yes I meant a nephrologist. I hate my auto-correct. I mentioned it to one of the Dr.'s that I work with that now is my primary care provider. He stated that they were probably more worried about my Hemolytic- Uremic Syndrome. So I don't know what I should believe, or if I should still say something to someone. Just like a oh by the way......

Jan4you's picture
Jan4you
Posts: 235
Joined: Oct 2013

Well, it sounds like your primary just holds to professional courtesy where you don't say something about another doc. BUT if things will ever change, I would suggest you let those involved know. I mean it was a significant oversight. (mistake)...sssshhh.. they don't like to EVER say they made a mistake!

How are you since your hospitalization?

Be well, and hope everything goes very well for you!

Warmly, Jan

kerrie75's picture
kerrie75
Posts: 20
Joined: Feb 2014

Jan,

Well, I finished dialysis in September. I was to the point I was going to have to get put on the kidney transplant list. I think that made my kidneys work right. I just now got my creatinine and GFR normal.I have been tired since. So basically I'm not 100% from this summer. Other than that I'm doing ok. Thanks for asking. I'm going to mention this to my surgeon when I go in. I was even tempted to call the nephrologist that found it in first place and say thank you.

 

Thanks, 

Kerrie

TillieSOK's picture
TillieSOK
Posts: 246
Joined: Jul 2013

I had been having back pain and other symptoms way back in the early 2000's.  Every doctor treated me with steroids or pain pills until it got really bad and I was having radical numbness in my legs and feet.  In 2010, I had an MRI of my abdomen and of my lower back and a nerve conduction test.  The MRI, upon looking at it six months post nephrectomy, the mass in my right kidney was CLEARLY visible three years before diagnosis.  Why didn't they see it, why didn't someone notice it earlier?  Three years might have made the difference between stage 3 and a lower stage of 1 or 2.  Might definitely made a difference in the grade, although I'll take grade 2 over 3 or 4 any day!  Hang in there and keep us posted on your surgery and recovery.  I'd say something if I was you, because RCC is kind of the red haired step child of cancer anyway, and it doesn't need to be swept aside or neglected!

kerrie75's picture
kerrie75
Posts: 20
Joined: Feb 2014

I might mention it when I go for surgery. It's at the same hospital I was at before. Will see what happens if anything

 

Kerrie

icemantoo's picture
icemantoo
Posts: 1660
Joined: Jan 2010

Kerrie,

 

This is the doctor's version of No Fault. None of the doctors is at faukt for failing to bring the mass to your attention because it was akways the obligation of the other doctor to have found it. Glad you found the diagnosis yourself while it was still manageable.

 

Sorry you had to join us, but we have all been there and done that. Yesterday was 11 amd 1/2 years from my surgery. Not fun, but it beats the alternative.

 

Icemantoo

Jojo61's picture
Jojo61
Posts: 488
Joined: Oct 2013

Welcome to the forum, Kerrie! Wow - there are some scary stories here!

I wish you well with your treatment!

 

Jojo

kerrie75's picture
kerrie75
Posts: 20
Joined: Feb 2014

Thanks so much!

I've gotten so many warm welcomes here. It definitely is a close and supportive family here.

 

Thanks again,

Kerrie

kerrie75's picture
kerrie75
Posts: 20
Joined: Feb 2014

I hope those have been 11&1/2 years cancer free? I most definitely agree with you that it's better then the alternative. I've too much to live for. I have 3 kids, a 15 yr old son, a 13 yr old son, and an 11 yr old daughter. Plus my oldest has cerebral palsy and is going to be having surgery on 25th of this month. This month is a busy one. Thank God for family.

icemantoo's picture
icemantoo
Posts: 1660
Joined: Jan 2010

Kerrie,

 

The 11 and 1/2 years have so far been Cancer free although having just turned 70 some of the stuff you used to do becomes a little tougher.

Our oldest turns 18 in 2 months and the youngest of 5 will be 13 later this year. These are the grandchildre. The kids are 47 and almost 45. Hopefully I can be around long enough to see them all start families of their own.

Ome of the things I have to watch now is my kidney function as a Neph and getting older does not help those numbers.

 

Assuming your pre RCC problems go away, can we rely on you to help with the newbies for the next 30 years?

My surgeon wrote on my discharge summary 2 days after surgery that I was discharged without pain. I do not know if he was drinking or trying out for stand up comedy when he wrote that.

 

Years from now you can look back and  hopefully see the humor in all this stuff as nobody in their right mind wants to deal with RCC.

 

Icemantoo

CommuterMom's picture
CommuterMom
Posts: 120
Joined: Jan 2014

Hi Kerrie,

My surgury is scheduled for 2/13/14. I had an MRI for backpain and a compex cyst was found in my left kidney.  My orthopedic mentioned I should follow ith my primary care doctor but he thought it was nothing.  MY primary care doctor told me she thought it was nothing to worry about and told me this was very common but gave me a script for a ultrasound. When the results came in I was referred to a urologist who told me he thought it was a malignant neoplasm and told me to schedule CT scan with contrast and see a urologist who was a surgeon.  The surgeon told me that the complex cyst in my left kidney was only a cyst and not to worry about it but found a more complex bosniak III cyst on my right kidney that would maybe never been found on it's own. 1.6 cm.  The way the doctors told me it was probably nothing I may have never really been serious about follow up but my father had Trasitional Cell Carcinoma in his kidney last year.  The moral is you must be your own advocate of your health. Kerrie since I am having a laporoscpic partial also the day after you, how about we compare notes on recovery?

-Diana 

kerrie75's picture
kerrie75
Posts: 20
Joined: Feb 2014

Sounds like a plan on comparing notes! I just want to get it done and over with!!!!!

 

Kerrie

CommuterMom's picture
CommuterMom
Posts: 120
Joined: Jan 2014

Kerrie,

How did they diagnos you with  type 1 papillary renal cell carcinoma? Did they do a biopsy?

-Diana

kerrie75's picture
kerrie75
Posts: 20
Joined: Feb 2014

I had a biopsy done on 1-24-14. It was very easy and pretty painless procedure. I thought anyway.Good luck with your surgery on the 13th. I hope both of ours goes very smoothly!!

 

Kerrie

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