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New and really scared, please help if you can

Touchdown99
Posts: 31
Joined: Apr 2011

I don't even know where to start. I am 44, and I have never smoked or drank alcohol, I am not overweight, and I am fairly active. I have a fantastic wife...we have been married 15 years....and we have the most amazing 5 year old son. My wife and my son are my whole world.

I had to go to the emergency room about a week ago with kidney stones. They did a CT scan without contrast and they found the stone stuck in the ureter; then the CT report notes this:

"In addition, there is 2.8 cm area of decreased attenuation in the posterior cortex of the right kidney. This likely represents a cyst although its margins do not appear quite smooth and regular, and further evaluation by contrast CT or ultrasound is recommended to ensure the absence of a mass".

Later on in the report it refers to it again, saying: "There is an area of decreased attenuation in the right kidney which may represent a cyst but its appearance is slightly irregular and further evaluation by contrast CT or ultrasound is recommended to assure the absence of a mass". 

Then at the end it says "There is an approximate 2.8 cm area of decreased density in the right mid renal cortex of uncertain etiology. This may represent a cyst with slight irregular margins, regard is some concern followup contrasted  CT or ultrasound is recommended".

What does this mean? My urologist who performed my kidney stone procedure told me he thinks it is benign; then later after the kidney stone surgery while I was still "out", my wife asked him point blank if he thought is was cancer and he said "No, I don't think it is cancer".  He also told me there was hurry and getting the follow-up CT, that we would do that later. But I went ahead asked him if we could go ahead and get it over with; so I am having it this Friday.

I am so incredibly scared and my wife wonderful and trying to stay positive until we see the results....but I have a terrible feeling that the results are either going to plainly say it is cancer; or be very suggestive that is cancer.

Will I die from this?

I can't bear the thought of my son growing up without me; he needs and deserves his dad to be there for baseball, college, and all the other times a boy needs their dad.

 

mrs_blkjak's picture
mrs_blkjak
Posts: 87
Joined: Apr 2013

If you do have a 2.8 cm kidney cancer tumor, you are likely going to be fine. They will most likely take all or part of you kidney if it is cancer, and you will have regular ct scans for a period of time to ensure that the cancer has not spread anywhere else. At the size of yours, it is unlikely. I think its good that you asked to have the scan asap. But try to relax, hug that cute five year old, and be glad that, if it is cancer, it was likely discovered before it had a chance to do much harm.

Touchdown99
Posts: 31
Joined: Apr 2011

Thank you Mrs_blkjak, I am so nervous. I can't hardly bear the thought of dying and leaving my son and wife. I can't believe this is happening. My CT scan is 11:00 eastern time Friday morning.

icemantoo's picture
icemantoo
Posts: 1512
Joined: Jan 2010

Touchdown99,

The CT with contrast will definately tell with a 90% degree of certainty whether it is Cancer or not. At 2.8 cm it might be . You will find out after the test.

Let's assume for the worst that it is Cancer. At 2.8 cm the Cancer is as close to 100% curable by a Nepherectomy or Partial Nepherectomty. Not fun, but it beats the alternative.

Mine was 11 years ago at a then young 59. Faye across the street had hers at 64 and she just turned 82. There is no reason to belive that at 2.8cm you will have problems down the road.

 

 

While no one willingly wants to join our club we try and make it not only bearable, but fun as well. Next summer a few us us on this board  plan on going to Cedar Point (roller coaster capital of the word) and Kahahari (the largest indoor water park in the us) and blow off a little steam and have a few drinks as well. You  are welcome to join us.

 

 

Icemantoo

Touchdown99
Posts: 31
Joined: Apr 2011

Thank you Icemantoo. You are too kind. Many time people don't consider ths hardship that cancer brings to a person and their family until they are faced with it personally. I certainly am starting to understand how hard this journey is.

I don't know how my urologist can be so assuring that he does not think it's cancer; unless he is just telling us that in the hopes that we won't worry.

My son is 5 years old.....I want to be here to protect him, comfort him, just share life with him. I love him so very much!

I never imagined I would be faced with this right now.

I will have the scan on Friday but in my heart I already know what the results will be and I feel like this is the beginning of the end for me.

garym's picture
garym
Posts: 1651
Joined: Nov 2009

TD,

Try to relax, what you are experiencing is perfectly normal.  First, "IF" it is RCC (renal cell carcinoma) it has been discovered very early and the likelyhood that you will die from it is about zero percent.  At 2.8 cm it is very small, RCC is very slow growing in the early stages so you have time to figure out for sure what you are dealing with and put together a plan.  Again, "IF" it is RCC a surgical cure is a high probability and there are several options to choose from, your medical team will help you decide which is best for your situation, but that could be several weeks or months down the road and life after surgery is pretty "normal".  Cysts are very common and a wait and watch approach is becoming more standard for small lesions to see if they grow or go away on their own.  Bottom line, be glad for the stone, it "may" have saved your life, either way you should be around for your son and his son in say twenty years or so.  BTW, its been almost four years for me and I found out in the ER following a motorcycle accident, mine was about 4.0 cm.  Keep us posted, the gang here will support you any way they can.

Good luck,

Gary

Touchdown99
Posts: 31
Joined: Apr 2011

Bless you Gary. I can't stop crying uncontrollably. I don't think I am strong enough to battle this.

garym's picture
garym
Posts: 1651
Joined: Nov 2009

TD,

You have come to the right place, we have all been there and we understand.  Should a battle actually develop, you are going to be surprised how strong you really are, and in your case, how short the battle will actually be.  The waiting is the hardest part, once you have a clear understanding of what's going on the rest is easy.  For now start working on a positive attitude, it will serve you well either way, you have much to be thankful for, concentrate on that, it will help keep the inner demons at bay.  Its a win-win situation.  If its a cyst, great, life goes on.  If its not, thats great too, because there is a 99.9% chance you'll be cured with a few small scars to show for it and life will go on, but you'll have a new perspective and greater appreciation for as long as you live.  I know it does not feel like it right now, but you've won the lottery, only the prize is more valuable than mere money, its life.  Don't be afraid of the scan, embrace it like a kid at Christmas, the results will set you free, its only the path you will take that is yet to be determined and you'll have many many years to enjoy it.  Very soon this will be nothing more than a small bump in the road, I promise.

Godspeed,

Gary

Touchdown99
Posts: 31
Joined: Apr 2011

Thank you icemantoo and Gary; I seriously can't thank you enough for the hope. My urologist is not a "urology oncologist " as far as I know; but his credentails say that one of his areas of specialty is "urologic cancers". Do you think it is okay to let him handle this if it is cancer? Or should I seek out a urologic oncologist at the university of kentucky (our closest major university although it's about 2 hours away )?

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icemantoo
Posts: 1512
Joined: Jan 2010

Touchdown99,

ALL of us on this board were schocked and scared when we heard the word Cancer. Cancer was something older people got and a lot of people were made miserable from Cancer and yes some of them died. And who ever heard of Kidney Cancer.That is enough to make anyone scared s--tless.

Those of us with Kidney Cancer and a little bugger 4cm or under are almost guaranteed a Cancer free life after the surgery. Even many of those with tumors 8 cm and above sre leading normal Cancer free lives.

Unlike other Cancers the cure for those of us with tumors 4cm or under occurs very quickly as a result of the surgery. very quickly.

 

The surgery is not fun , but at 4.0cm or less you are as close  to a Cancer free life as can be guaranted. ALL of us have been there and done that.  Again not fun, but you are destined to lead a normal life.

 

 

Everything is going to be fine no matter what your next CT with contrast shows with regard to the little buggar..

 

 

Icemantoo

Touchdown99
Posts: 31
Joined: Apr 2011

Thank you icemantoo and Gary; I seriously can't thank you enough for the hope. My urologist is not a "urology oncologist " as far as I know; but his credentails say that one of his areas of specialty is "urologic cancers". Do you think it is okay to let him handle this if it is cancer? Or should I seek out a urologic oncologist at the university of kentucky (our closest major university although it's about 2 hours away )?

icemantoo's picture
icemantoo
Posts: 1512
Joined: Jan 2010

Touchdon99,

 

Most Urologists are not trained to do Kidney Cancer surgeoy. With large urological practies their usually are 1 or more Urologists trained in Kidney Cancer surgery. They tend to be the younger Urologists. Some Urological Oncologists deal mostly with Prostate Cancer. Others deal with both. Do not be shy about asking if the Doctor does Kidney Cancer surgery, if he does it Laproscopically (which you should be a candidate for ) and how many Kidney Cancer Surgries has he done. If anything  he says gives you a concern contact the University for at least a second opinion.

 

Icemantoo

Touchdown99
Posts: 31
Joined: Apr 2011

Thanks, I know that he does do these types of surgeries. Bit I just hope he is good! Lol .

 

I asked an oncologist on the JustAnswer website and he said its common for a urologist to take care of this rather than an urology oncologist; which surprises me.

Touchdown99
Posts: 31
Joined: Apr 2011

Please keep me in your prayers.

Touchdown99
Posts: 31
Joined: Apr 2011

The original ct scan noted that my kidneys appeared normal but that the left kidney was "much smaller" than the right kidney. I wonder if this would be a factor if they have to take the whole kidney? Can a small kidney support someone? I though you all might have some experience with that finding.

Djinnie's picture
Djinnie
Posts: 769
Joined: Apr 2013

I am sorry to hear you are going through so much trauma, we all understand your fears. We will all be praying for the best possible outcome for you on Friday. Whatever the outcome you have a long and happy future to look forward to. I have had kidney cancer twice, the first was ten years ago. I had my second surgery just recently, believe me I have plans for the next ten years also.

Please come back and let us know how you got on. All the best:)

 

Djinnie x

todd121
Posts: 559
Joined: Dec 2012

My tumor was in my right kidney, and my left kidney was smaller also.

First of all, they will do a test to figure out what the relative amount of work is being done by each kidney. I can't remember the name of the test, but basically they inject you with some kind of dye that has a radioactive tracer in it, and they monitor the flow through your kidneys I believe either by lots of photographs/xrays or by a film. Perhaps someone else can explain this better than me. When they are done they'll know what percentage of the work is being done by which kidney. My urologist told me that as long as they are within 5% of each other I'd be ok to lose the other kidney. My tumor was wedged in the middle of my kidney amongst all the blood supply, so I was not a candidate for a partial.

The second issue is where yours is located and whether they might be able to do a partial instead of a radical (if it turns out to be cancer at all). By the way, this is where you might want a second opinion. Some urologic oncologists specialize in these partial nephrectomies and can get at tumors that others wouldn't want to try. Whatever they do you want them to get the whole thing with good margins.

Hopefully it's just a cyst. The CT with contrast will tell you.

So you have a lot of unknowns at this point. I know it's easy to go to the worst places in your mind with this. Do research if you can do it without making yourself too worried.

I like my urologic oncologists website where he goes over the various types of kidney masses and what their characteristics are and the different approaches.

http://www.kidneycancerinstitute.com/

If you don't have a lot of confidence in your doctor, get another opinion. I've heard good/excellent doctors say that any good doctor will not mind you getting another opinion. You want someone you have confidence in. Don't worry about your doctor's ego. Worry about you and your family.

Best wishes,

Todd

Touchdown99
Posts: 31
Joined: Apr 2011

Thanks Todd; pretty ironic but my 2.8 cm "thing" is in the middle of the kidney too. I hope that doesn't create a problem if they have to take out part of it. If it does create a problem with doing a partial removal then I wonder what my options are? I would not want to have to start on dialysis at age 44. By the way how big was your cancer? How was it found? Etc.

 

thank you so much.

GSRon's picture
GSRon
Posts: 1211
Joined: Jan 2013

Touchdown.. guess what..??  We are all going to die... just not today..!  Even IF that is Cancer, as others stated your tumor is small... which makes the future very bright indeed..!!  Try to relax, I know it is hard.. but being stressed out does not help...  It is much better to be found this early than real late, like some of us.. (that includes me..).   When they do the scan with contrast they will know pretty much what it is..  Oh yes, I have cysts in my remaining Kidney, but not an issue for me overall...  Hang in there... give us a big holler when you hear it is (hopefully) a cyst..!

Ron

todd121
Posts: 559
Joined: Dec 2012

Mine was just shy of 7cm. It was discovered when I started peeing red on a business trip and then started having pain on my right side. I thought I had a kidney stone (again). It felt the same. I went to the ER because the pain got to be pretty unbearable and they did a CT there and found it. The pain was caused from blood clots passing through the ureter so it really did feel just like a kidney stone.

Because of the location of mine, they thought that it might be a transitional cell cancer instead of a RCC cancer. Transitional cell cancer is more like a bladder cancer and is quite different. These cells in the bladder line the ureter and also the inside part of the kidney. But mine turned out to be RCC, clear cell. The most common type.

My urologic oncologist was really an expert. He's the head of the urology department at UC Irvine Medical School. He consulted with another surgeon on doing a partial to try and wedge the tumor out, but because it was so in the middle of all the blood supply there was no way to do it. They recommended doing the radical. It was done laprascopically, but I have a pretty big scar because they wanted to take the whole thing out intact and the location made it difficult to do it in pieces.

Just do the next indicated step, do your little bit of research, and get second opinions. Try and not worry about stuff you don't know yet. (Easy to say...)

I've heard you don't actually need a lot of kidney function to be pretty ok, so I have a hard time imagining that there's such a huge difference between your two kidneys that that's going to be the issue. I haven't heard of anybody on this board having that be the problem.

Best wishes to you.

Todd

P.S. By the way, I've heard that from the CT with contrast they can tell whether it needs to come out pretty reliably. Your mass is not really small and not really big. It's big enough to have a good look on the CT scan, but small enough to make it probably Stage 1 (if it's even cancer, which, hopefully it is not). If they do decide it needs to come out, you won't really know what it is or the actual stage until they do the pathology report. They can't fully stage it from imaging, or tell what it really is either, just what it "likely" is with regards to cancer or not, and a "likely" stage as well.

angec's picture
angec
Posts: 621
Joined: Mar 2012

Touchdown.... that name alone shows us that you are tough! You really and truly need to relax, stop crying and stop thinking you are going to die!  You really are not going to die from this.  The report did not even identify it as a mass.  Low density usually represents water, which means a cyst.  I think your urologist is very familiar with this and he said he doesn't feel it is a mass of cancer.  

Now, that being said. Let's say if the report did say it was a mass or probably cancer, you would still have been one of the fortunate ones to have found it early. In the RCC game the earlier you find the mass and the smaller it is, it is curable with surgery.  So, either way, you will not die!  I can't tell you how many on this board wish they would have found their cancer that small and early. I think you are putting undue stress on yourself and you really need to be calm.  Please, listen to us here, we pretty much have a good idea! ;)  Don't bring any negative thoughts to yourself saying you know what it is or what it will be.  The doctor said not cancer so you should be ok.  I would also get a sonogram because those are pretty good at diagnosing masses also.  Alot of people, especially after age 50, get kidney cysts. They are just monitored.  Sometimes they even disappear on their own. In any case.  Just relax and try not to worry!  You will be there for you son and his son, and so on!  

Don't read anything on the internet about cysts, RCC or anything else. Just be positive. Alot of information on RCC is old and they are outdated. Not that you need to know this, but there are alot of new drugs on the market in the past few years that treat RCC and render it a chronic disease instead of a death sentence.  Please keep in touch and I will be praying for you. In fact, if it helps you to know, I will pray for you right after I send this post.  Love to you and the family, you will be ok! xxoo

Angela

 

Touchdown99
Posts: 31
Joined: Apr 2011

I was not sure whether I should post this as a new thread or as a reply to my other thread. I have been having so much anxiety, I asked to have the CT scan with contrast moved up...and it is now schedule for about 2 hours from now; at 11:30 today. Please please pray for me. I am amazed at the courage of the good people on this board. I love you.

Touchdown99
Posts: 31
Joined: Apr 2011

Hi everyone, thank you for praying. I don't know what to make of the results. My ct was definitely done with IV contrast because I had an IV with iodine, weird metallic taste, etc.   But the results are confusing and although it says CT ABD/PEL WO/W CONTRAST at the top of the report, later on it says no contrast. Here take a look and see if you can offer any insight.

 

 

                                                    Here is exactly what the report from my ct scan with IV contrast says:

 

Exams: CT ABD/PEL WO/W CONTRAST

 

Procedure: CT ABD/PEL WO/W CONTRAST

 

Clinical History: Renal Mass

 

History: Follow up from stone removal

 

Comparison: September 23, 2013

 

Findings: Axial images were acquired at 3.8 mm intervals from the dome of the diaphragm to the floor of the pelvis without the use of intravenous contrast.

 

Lung windows demonstrate several stable rounded calcific densities consistent with an old healed granulomatous process such as histoplasmosis. No suspicious masses are seen. No pleural effusion or pneumothorax is identified.

 

Liver windows demonstrate the visualized spleen to be unremarkable given the limitation of the study without the use of intravenous contrast. A small hypodensity is identified adjacent to the gallbladder fossa within the medial aspect of the right lobe of the liver. Measures approx 3mm in AP dimension and is too small accurately characterize on this exam. Statistically this is most likely a cyst. The liver is otherwise unremarkable in appearance.

 

Bone windows demonstrate age appropriate degenerative change within the spine and bony skeleton. No suspicious blastic or lytic lesions.

 

Soft tissue windows demonstrate the visualized heart and mediastinal structures to be unremarkable in appearance. Once again calcifications are identified within the lung bases and a very small hypodensity is seen within the medial aspect of the right lobe of the liver. The spleen, pancreas, adrenal glands and stomach are unremarkable in appearance. Stable cysts are identified in both kidneys. The previously seen right sided hydronephrosis and hydroureter have decreased. The previously seen stone is no longer radiographically evident. Visualized bowel bladder and prostrate are unremarkable. No suspicious adenopathy is seen.

 

Impression: 

1. Resolution of the previously seen right sided hydronephrosis as well as ureteral stone.

2. Very small hypodensity within medial aspect of right lobe of liver anteriorly. Statistically this likely a small cyst.

3. Old healed granulomatous process.

 

 

dhs1963's picture
dhs1963
Posts: 373
Joined: May 2012

The key elements are:  what they were worried about is no visible...meaning there is no tumor; they do not disapear.

NanoSecond's picture
NanoSecond
Posts: 519
Joined: Oct 2012

The only thing strange is that you reported that you were given contrast but the report claims that was not the case - at least in terms of evaluating your liver.  You need to follow up and find out why there is a discrepancy.

Other than that this shows that you are likely NED (No Evidence of visible Disease).  Congratulations!

Touchdown99
Posts: 31
Joined: Apr 2011

Well I talked to the radiologist who read the ct scan today on the phone.Update: He said that he did indeed look at the contrast images and that the report was correct but it was a new system and he just erroneously typed it was without contrast. He is doing addendum for me. I said did you see anything that looked like cancer he said no but you do have several cyst. I just picked up the addendum/amended report. Here is exactly what it says:

REPORT HAS BEEN AMENDED.

Addendum 10/03/2013.

ADDENDUM: CT/ABDWPO.

addendum: The study was performed with and without the use of intravenous contrast.Numerous simple appearing cysts are seen within each kidney.

 

 

That is good news... But my appointment with my urologist is today at 3:10; will he go along with these or will he look to see if the radiologist is right? I'm kind of scared he might interptet the images different and still give me other news today. Does that ever happen?

NanoSecond's picture
NanoSecond
Posts: 519
Joined: Oct 2012

Well, that was the right answer.  I am glad you got that mistake sorted out with the radiologist.

Are you going to consult with your Urologist about your heart condition?  I thought not.  Your radiologist is the expert on reading these scans, not your Urologist.

Still, you do seem to be intent on discovering bad news where there is none...

OK, here you go:  Our government is still shut down.

Touchdown99
Posts: 31
Joined: Apr 2011

I'm new to dealing with various doctors interpreting results. Who do you believe if the urologist says the radiologist missed something?

dhs1963's picture
dhs1963
Posts: 373
Joined: May 2012

Often, the urologist only reads and reports the on the report of the scan.  They will look at the scan only if there is something to see. 

garym's picture
garym
Posts: 1651
Joined: Nov 2009

Good one Neil!

 

TD,

Cart before the horse, drive those negative thoughts out, hug your wife and son, then go buy that lottery ticket.  You're on a roll, BELEIVE IT!

Djinnie's picture
Djinnie
Posts: 769
Joined: Apr 2013

I think because you had yourself totally convinced you had cancer, you are finding it hard to believe that you don't. There is no other news!! Just take some deep breaths and relax, there is nothing more to be scared about!

 

Djinnie

Touchdown99
Posts: 31
Joined: Apr 2011

Thank you all. The urologist said all was ok. I'm very fortunate. The people have met on this board over the last few days are the friendliest, most courageous people I have ever met. 

todd121
Posts: 559
Joined: Dec 2012

It's great news. Congrats.

WO/W indicates "without and with" contrast. They scan without, add the contrast, scan again. (As I recall...)

I'm a little confused. Earlier you said they had seen a 2.8 cm mass. That's a pretty good size mass. But this report doesn't mention such a large cyst/mass. Did the same radiologist read both scans? Where did the 2.8 cm thing go? Or was it maybe 2.8 mm?

Todd

bcbigb
Posts: 31
Joined: Sep 2013

i was recently diagnosed on sept. long weekend.never smoked ,dont drink alcohol or coffee,regularl workout.docs were astoniashed when the news came back ,was diagnsed by accident.tumer was 12cm by 8 cm . took my right kidney tumer and lymph nodes .Doc sais everything looks good ,results in 2 weeks but everything looks positive.Yes surgery hurts but you should be doing well after .so good luck and my family prayers are with you.always think positive and you will do fine ,its the unknown that is the scariest.

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