"Most Concerning for RCC"

RichW said:

When did ou find out?

Thanks cran 1.  I am curious as to when you found out.  Seems like they arent going to watch and wait with yours.  I guess we are pretty blessed, if i can say it that way, that they found ours very early.  I really like the site and it is a blessing to have people who have gone through this and understand. Thanks for the encouragement!  I'll pray for you that your surgery goes well!

 

RichW

Found out about.. 2 months ago i think. I also have lower back pain but the oncologist and urologist both say not related. Doesn't mean I don't stress about it though. Give it some time and you will start to loosen up about it. I finaaly relaxed this weekend after talking to the surgeon and had a six pack and grilled out with the family. Back pain bothers me though hahah.

foxhd said:

feeling discomfort

Rich, normally you would not feel anything that small. Many have softball sized tumors that are never felt. Maybe I should have known because I noticed that when I exercised I was developing a scoliosis. Blamed it on a bum knee and compensated posture. Pain and lesion size are related to how involved a problem is and how close it is to a sensory nerve. So small can cause pain. Large, not so much. Not having pain is what lets the bugger get us in trouble.

That's what I did anyways.  I was just moving into a newer house that I barely could afford with three kids under 7.  Life was going great then bam, they drop the C word on me.  I thought NO No... u meant to say your back hurts because your too fat and drink too many rum and cokes on the weekends. Cancer!  However that being said it is not a death sentence for you.  It is mostly by luck people like you and I have tumors like this found early. As was pointed out, many don't know they have a tumor till they urinate blood one day and often that's too late for curative surgery. 

So my honest opinion in sum, its like I feel when people say 'getting old sucks.'  Well it beats the alernative.  welcome to the club.  Surgery sucks for a few but its easier for most.  Best of luck, hug your kids and have a shot.... but iust one as alcohol is bad for kidneys. Don't get me wrong I was freaked out and still am at times.  But have faith

RichW said:

Dr. Altered Test Results!!

Thanks flatlander!  I need advice..  After being told on the 28 of March I had RCC, my wife and I were going over all my labs from the previous year and I was treated in Oct. 2012 for Microscopic blood in the ruin which my doctor said was a UTI.  My wife was upset when she read the UTI and asked why i never said anything.  I told her i thought it was no big deal, Until now.  My pcp asked if it ever happenedbefore and i said no and he said UTI.  Ut took over 2 1/2 hours to see him that day and i told the nurse i had to leave in 10 min. doc came in 5 min. visit was over.  i was rushed to say the least.  Now having said that I was checking the results thoroughly with my wife of this urin test for creatine level which was within range and had my PCP visit this past Thur. And when I brought up that test he got all big eyed and said he never recalled it.  I brought up the creatine level and right away he interrupted me and stated it was normal in that test...  Now my wife and I look at each other kinda in shock and the doc basically rushes me out to get chest X-ray, labs and urinalysis and sends me on my way to clear for surgery.  We go home that night and the letter stating UTI is gone and the test results are altered!!  Let me add his demeanor was completely Difft this visit than any other.  I'm paranoid now as to why he would do this!  I am go to a urologist he highly recommends and I'm extremely nervous!  I had already suffered from anxiety in the past and this whole ordeal has been stressful and now I'm paranoid about going under the knife and happening not to come out of this surgery!  I totally have no confidence in My PCP now.  My insurance is all network docs!  My sister is an RN and also read these reports and is shocked as well.  Any advice is appreciated!!

RichW

He screwed up by overlooking it back then just dismissing it as UTI and not pursuing it, and now he tries to cover it since (Im no lawyer) you have developed cancer and that basically spells malpractise...just my five cents. However, given your case I dont think you should worry about the OP but change afterwards...

RichW said:

Dr. Altered Test Results!!

Thanks flatlander!  I need advice..  After being told on the 28 of March I had RCC, my wife and I were going over all my labs from the previous year and I was treated in Oct. 2012 for Microscopic blood in the ruin which my doctor said was a UTI.  My wife was upset when she read the UTI and asked why i never said anything.  I told her i thought it was no big deal, Until now.  My pcp asked if it ever happenedbefore and i said no and he said UTI.  Ut took over 2 1/2 hours to see him that day and i told the nurse i had to leave in 10 min. doc came in 5 min. visit was over.  i was rushed to say the least.  Now having said that I was checking the results thoroughly with my wife of this urin test for creatine level which was within range and had my PCP visit this past Thur. And when I brought up that test he got all big eyed and said he never recalled it.  I brought up the creatine level and right away he interrupted me and stated it was normal in that test...  Now my wife and I look at each other kinda in shock and the doc basically rushes me out to get chest X-ray, labs and urinalysis and sends me on my way to clear for surgery.  We go home that night and the letter stating UTI is gone and the test results are altered!!  Let me add his demeanor was completely Difft this visit than any other.  I'm paranoid now as to why he would do this!  I am go to a urologist he highly recommends and I'm extremely nervous!  I had already suffered from anxiety in the past and this whole ordeal has been stressful and now I'm paranoid about going under the knife and happening not to come out of this surgery!  I totally have no confidence in My PCP now.  My insurance is all network docs!  My sister is an RN and also read these reports and is shocked as well.  Any advice is appreciated!!

RichW

Hi Rich,

Your primary care doctor having taken steps to cover his back,does not alter your  test results in respect of the tumor. He is obviously concerned for his reputation and not his patient, nothing new there then. The fact that your PCP can't be trusted does not mean that the Urologist can't be. Have you looked up the Urologist on the Internet to check out his credentials? Do not be rushed, discuss everything with the Urologist and make sure you are comfortable with everything. If you don't feel comfortable with this particular Urologist you can always find another from your Insurance list.

You have time to sort everything out, you need to feel that you have some control over this situation. Concentrate on finding a Urologist and arranging an operation, and when that is done with obviously you need to find a new PCP. 

When I lived in Dallas in 2003 my Internist found a tumor on my kidney,it was just under 4 cm. I was sent to a Urologist who advised me that I needed an operation immediately, he had an opening the following week. I did not want to be rushed, but he advised me that it was urgent and went on to tell me my prognosis was around 3 to 5 years. At this point he opened his door and told his nurse that he was hungry and asked that she get him a sandwich, needless to say I walked out.He went ahead and booked the surgery, I phoned the hospital and cancelled it.

I started researching, trying to find the best kidney cancer specialist in my area.I found one at Zale Lipshey in Dallas, he was brilliant, made me feel at ease and I was confident in him. That is what you need to be, any operation is daunting, this one in particular. It is not unnatural to have concerns about coming through the op, but you will you are a strong young man. 

Try to stay calm, take some time to make the right choices for you. You will come through all of this the better for it.

Sorry for the long posting.

All the best

Djinnie x

RichW said:

Caught me by surprise

Thanks for making me feel better about the situation.  It totally caught me by surprise to see my PCP take this route.  I believe GOD is in control but my faith is shaken and I am out of sorts over this. It really helped to get this off my chest.  Really I appreciate and I'm grateful to you all.  I know many others have it way worse than I!  I am just overwhelmed with this and I never would have thought my doctor would be like this.  I need to take care of me as you say!  I totally get it..  Thanks for understanding..

RichW

Rich, Gale, Djinnie - what shocking stories of medical 'care' that was at best insensitive, at worst negligent.  Those of us in good hands probably don't realise how lucky we are. In fairness, Gale is right that doctors are also humans and prone to the same failings as the rest of us, but they are making very good livings out of their work and should not let us down like that. 

It all underscores the importance of Participatory Medicine and looking out for yourself - get a second opinion if in any serious doubt and don't hesitate to move on if you feel you need to - it's their living, but your life!

RichW said:

Dr. Altered Test Results!!

Thanks flatlander!  I need advice..  After being told on the 28 of March I had RCC, my wife and I were going over all my labs from the previous year and I was treated in Oct. 2012 for Microscopic blood in the ruin which my doctor said was a UTI.  My wife was upset when she read the UTI and asked why i never said anything.  I told her i thought it was no big deal, Until now.  My pcp asked if it ever happenedbefore and i said no and he said UTI.  Ut took over 2 1/2 hours to see him that day and i told the nurse i had to leave in 10 min. doc came in 5 min. visit was over.  i was rushed to say the least.  Now having said that I was checking the results thoroughly with my wife of this urin test for creatine level which was within range and had my PCP visit this past Thur. And when I brought up that test he got all big eyed and said he never recalled it.  I brought up the creatine level and right away he interrupted me and stated it was normal in that test...  Now my wife and I look at each other kinda in shock and the doc basically rushes me out to get chest X-ray, labs and urinalysis and sends me on my way to clear for surgery.  We go home that night and the letter stating UTI is gone and the test results are altered!!  Let me add his demeanor was completely Difft this visit than any other.  I'm paranoid now as to why he would do this!  I am go to a urologist he highly recommends and I'm extremely nervous!  I had already suffered from anxiety in the past and this whole ordeal has been stressful and now I'm paranoid about going under the knife and happening not to come out of this surgery!  I totally have no confidence in My PCP now.  My insurance is all network docs!  My sister is an RN and also read these reports and is shocked as well.  Any advice is appreciated!!

RichW

Do you have a copy of the original report that he altered? It was bad enough he was negligent and diagnosed it as a UTI...it doesn't sound like you had any other symptoms of a UTI...but altering your medical record is a big time criminal offense. I was a medic and that was drilled into us and I am sure your sister will tell you the same thing...Everyone here knows my posts are usually books and when I was a medic I was one of the few that actually used the "supplemental report" when documenting calls...because even though you might know you did something if you don't document it you didn't do it in the legal world...but altering a report later could actually land you in jail...and if he did that what else has he done and I know Drs. are busy and there a 4 Drs in the practice I go to but they have a sign that says if you have waited more than 15 minutes let the front desk know...and even with that I never feel like I am being hurried. You definitely need to find a new PCP. My baby sister is a nurse too...she just turned 55 and she graduated from Nursing School last May...so proud of her. Is your sister in the same area as you? So that maybe she could recommend someone..I don't know where you live...some of us are so lucky to be near great cutting edge medicine and Drs. I live in So. MD and can go to DC and Baltimore in about the same time...I have done both and it is worth the hour and a half drive but I know that many people aren't that close to the big hospitals..

http://www.whcenter.org/body.cfm?id=559481

This is a link to my Dr. and he was wonderful, very patient oriented and compassionate and loves what he does.

RichW said:

Getting 2nd opinion!

Thanks Roaddr23, and flatlander.  Update.  I went to urologist on Friday April 19, and he said it is small and its 1.9 cm not 2cm.  I'm getting MRI on Sunday April 28.  He said it's right in the middle of the kidney next to the main artery and blood vessels and is saying maybe we will watch it for 6 months. He said if they try to take it out I would probably lose the whole kidney and he'd like to keep it.  I saw him for like 4 min. and his physician asst. took over.  I was not happy to say the least!  I asked the physician asst.  about it growing into to artery and veins and he said it would only push not intrude the veins!  I was surprised and discussed what I'd read on this and many other sites and he said don't believe everything you read online.  Not happy to say the least!!  I will go for MRI on the 28th and then for follow up on May 10 with the urologist to see what he says.  Then I will take the films and go for 2nd opinion.  Not really wanting this to grow and create more complications down the road with it possibly growing into the artery or metastasize to anywhere else.  Any input would be greatly appreciated as always!!

 

RichW

That's utter crap. RCC (if that's what it is), does grow into veins and arteries. That's one of the differences between Stage 1/2 RCC and Stage 3. I have firsthand experience with this. My urologist oncologist diagnosed me with Stage 1 RCC preop (likely RCC). When the pathology report came back (Stage 1 is basically a tumor < 7cm in size, which is fully encapsulated in the kidney, whereas Stage 2 is a larger tumor in that same state) I had Stage 3a, because the tumor had invaded "both macroscopically and microscopically the small veins in the kidney".

If I were you, I wouldn't trust that particular PA again, unless he/she wants to hold your bedpan.

My situation has some similarities to yours. A year ago in December I had some blood in my urine that lasted just one overnight. I asked my oncologist uncle about red urine and what could have caused it (it had gone away) and he couldn't think of anything. (He's a damn good oncologist, by the way.) I sent to see my doc 2-3 weeks later and saw the PA instead for a checkup. The blood was gone (they did a urinalysis) and he couldn't think of anything either. He did some STD tests for me, just in case.

A year later, I had major blood in my urine. Visible for a couple of days. Went to the urgent care. The doctor there was thinking UTI or STD also. We ruled out STD, so she settled on UTI, but wasn't comfortable with that because I had no fever and my blood tests were normal. She put me on an antibiotic and sent my urine in to be cultured. A week later I got a letter from her saying it was not a UTI but to see a urologist ASAP. I was ahead of her, though. I had gotten some pretty severe pain and thought maybe I had a kidney stone, which I had had before. My uncle, the pretty good oncologist, thought maybe that's what it was too. I went to the ER and nearly talked the doc there into my theory. Fortunately he didn't listen to me, and did a CT scan just in case. There they found a 6.8 cm tumor.

So what I guess I'm saying is that this cancer is rare, and doctors don't see it in their practice. Even for an oncologist, it's a pretty rare cancer to deal with. They are used to seeing prostate cancer, and lung cancer, and breast cancer and a bunch of others. It's not generally on their radar.

You have a small tumor. That's good. However, the fact that it is near the blood supply is not good. These tumors generally grow slow, so no need to panic or rush to bad decisions. However, a wait and watch approach with a tumor near your blood supply should only be done with really good advice from a doctor familiar with this kind of cancer. See an experienced urologic oncologist. Maybe a couple of them. See a medical oncologist at some point.

It's hard to avoid the anxiety. I remember it well. The best thing to fight it is knowledge. Have a look at these two websites:

http://www.kidneycancer.org/knowledge/learn/about-kidney-cancer/

http://www.kidneycancerinstitute.com/

When you're seeing a doctor (MD, PA, whoever) and you sense you know more about the subject than he/she does, you probably do. Find another one. Quickly. Don't stop until you find someone you are sure knows more about it than you do. I found out that most oncologists/urologic oncologists will try very hard to see you within 48 hours if you're in a situation like you are in. I got my appointment on the Monday before Thanksgiving by calling on the weekend and they agreed to see me that day. My surgeon was the head of urology at University of California Irvine Urology. Don't assume you won't get in with a really good specialist. You just have to tell them what is going on with you. (But these surgeons probably aren't going to spend a lot of time chitchatting with you. Write all your questions down. Take at least 1 person with you when you go to your appointments to help you keep track of what they said).

They couldn't do a partial for me either because my tumor was in the center of my kidney. I'm glad I had the whole kidney removed. I think it was the best course of action. My tumor was found the week before Thanksgiving and I had my kidney removed on December 10th. I'm glad I had it done quickly. There's a big difference in recurrence between Stage 1 and Stage 3. Usually, size would be the main factor. But for you, I think you need to consider the location as well.

Best wishes to you and your family. Please keep us updated.

Todd

RichW said:

Thanks Todd

I really appreciate your input Todd!!  Lots of good information!  I'm going for the MRI on Sunday then I'm making a few calls to Sloan Kettering and cancer centers of America and see someone who is more experienced with RCC.  After all I have read on here I don't believe waiting is a good thing with it being in the location it's in!  I will be looking at those sites tonight.  Thanks a ton and GOD Bless!!

RichW

Concentrate on Memorial Sloan Kettering Cancer Center.  They have broad expertise dealing with renal cancer.