New and really scared, please help if you can

Touchdown99
Touchdown99 Member Posts: 31
in Kidney Cancer #1

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.

 

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Comments

  • mrs_blkjak
    mrs_blkjak Member Posts: 103
    #2
    If you do have a 2.8 cm

    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.

  • icemantoo
    icemantoo Member Posts: 3,361 Member
    #3
    You are not going to die from this

    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
    Touchdown99 Member Posts: 31
    #4
    mrs_blkjak said:

    If you do have a 2.8 cm

    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.

    Thank you Mrs_blkjak, I am so

    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.

  • garym
    garym Member Posts: 1,647
    #5
    Welcome to the club...

    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
    Touchdown99 Member Posts: 31
    #6
    icemantoo said:

    You are not going to die from this

    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

    Thank you Icemantoo. You are

    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.

  • Touchdown99
    Touchdown99 Member Posts: 31
    #7
    garym said:

    Welcome to the club...

    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

    Bless you Gary. I can't stop

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

  • garym
    garym Member Posts: 1,647
    #8
    Touchdown99 said:

    Bless you Gary. I can't stop

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

    Fear of the unknown sucks...

    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

  • icemantoo
    icemantoo Member Posts: 3,361 Member
    #9
    Touchdown99 said:

    Bless you Gary. I can't stop

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

    The C word

    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
    Touchdown99 Member Posts: 31
    #10
    icemantoo said:

    The C word

    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

    Thank you icemantoo and Gary;

    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 )?

  • Touchdown99
    Touchdown99 Member Posts: 31
    #11
    Please pray for me

    Please keep me in your prayers.

  • Touchdown99
    Touchdown99 Member Posts: 31
    #12
    garym said:

    Fear of the unknown sucks...

    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

    Thank you icemantoo and Gary;

    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
    icemantoo Member Posts: 3,361 Member
    #13
    Touchdown99 said:

    Thank you icemantoo and Gary;

    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 )?

    Your Surgeon

    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
    Touchdown99 Member Posts: 31
    #14
    icemantoo said:

    Your Surgeon

    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

    Thanks, I know that he does

    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
    Touchdown99 Member Posts: 31
    #15
    Touchdown99 said:

    Please pray for me

    Please keep me in your prayers.

    The original ct scan noted

    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
    Djinnie Member Posts: 945 Member
    #16
    Touchdown99 said:

    The original ct scan noted

    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.

    Scan!

    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
    todd121 Member Posts: 1,448 Member
    #17
    Touchdown99 said:

    The original ct scan noted

    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.

    Smaller left kidney

    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
    Touchdown99 Member Posts: 31
    #18
    todd121 said:

    Smaller left kidney

    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

    Thanks Todd; pretty ironic

    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
    GSRon Member Posts: 1,303 Member
    #19
    Touchdown99 said:

    Thanks Todd; pretty ironic

    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.

    Touchdown.. guess what..?? 

    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

  • angec
    angec Member Posts: 924 Member
    #20
    Touchdown.... that name alone

    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
    Touchdown99 Member Posts: 31
    #21
    CT Scan is actually today

    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.

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