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Scared & Worried! :(

2

Comments

  • Melliebean
    Melliebean Member Posts: 53
    Hang in there

    Hang in there. I am realitivly new here as well. I have a tumor on my right kidney and I am waiting on surgery August 11th.  I hope your husband finds out it isn't cancer but if it is we just have to follow the steps and know everything is going to turn out fine. best wishes to your husband. I know what you all are going through. As far as them not seeing it in 2012 and the growth rate. I didn't have mine on a ct scan I had the end of 2012 either. Hang in there.

  • kajunnana
    kajunnana Member Posts: 17
    angec said:

    Sorry for all that you are

    Sorry for all that you are going through. But you are enduring very well! You keep up that fighting spirit because that will get you through.  Did you have a copy of ct report on you? Did you say the mass was 1 1/2 inches or cm? Because usually the reports give you the size in MM or CM.  Do you have a clarifiation on that?  And I have to tell  you, there have been many cases on here where it turned out NOT to be cancer.  The possibility is there but it can go either way. Try not to worry about anything until you are sure what it is.  And there are many things out there now to treat RCC if it turns out to be so. This is not a death sentence. Is there any possibility that he has a kidney infection due to the stone that he has?  I have seen that also.  Someone had a stone in one kidney and had an infection in both kidneys.  Did they give him antibiotics by any chance?  Did the stone pass yet? A 2 mm stone should be able to pass easily. Drink lots of water and squeeze a lemon into it. Also good for kidney stones is a product that i ordered and use frequently. It is called Kidney Complete. You can do a search for it. When you have pain you take it and it helps the pain and melts the stone. Works fast too.  Hopefully it will be nothing, but if it is the C word and it is small, than more than likely a partial is possible and he will be done.  Praying it goes your way!  

    PS.. i just read rangerk's post.  You see what i mean about maybe it is not cancer? He had two tumors on the kidney and two on glad and they are not cancer.  ;)

    angec
    I did get a copy of the

    angec

    I did get a copy of the reports & the CT's, on the report it has that it is 2.7cm the doctor told me that it was about 1 1/2" solid mass growing on the outside of the left kidney. The stone is in the right kidney. They did urine test to see if there was a infection and there was none. The 1st time to the ER they did give him antibiotics just in case, he still has not passed the stone!

    Thanks for the prayers!

  • kajunnana
    kajunnana Member Posts: 17

    Hang in there

    Hang in there. I am realitivly new here as well. I have a tumor on my right kidney and I am waiting on surgery August 11th.  I hope your husband finds out it isn't cancer but if it is we just have to follow the steps and know everything is going to turn out fine. best wishes to your husband. I know what you all are going through. As far as them not seeing it in 2012 and the growth rate. I didn't have mine on a ct scan I had the end of 2012 either. Hang in there.

    Melliebean
    Your & your family

    Melliebean

    Your & your family are in my prayers! I hope you will have a fast recovery after your surgery, please keep us posted!

  • kajunnana
    kajunnana Member Posts: 17
    Well today marks the day of

    Well today marks the day of our new journey! I say "our" because Kenneth will not have to fight this alone!!! Today we went to the urologist and he told us that he is 99% sure that it is RCC. He was a little upset that the ER did not do the second CT with contrast dye so we are going to do a CT/PET Monday morning early!! He wants to just make sure it is just in Kenneths left kidney. So as I said today marks a new beginning! 

  • angec
    angec Member Posts: 924
    kajunnana said:

    Well today marks the day of

    Well today marks the day of our new journey! I say "our" because Kenneth will not have to fight this alone!!! Today we went to the urologist and he told us that he is 99% sure that it is RCC. He was a little upset that the ER did not do the second CT with contrast dye so we are going to do a CT/PET Monday morning early!! He wants to just make sure it is just in Kenneths left kidney. So as I said today marks a new beginning! 

    That is very small and can be

    That is very small and can be curable with surgery. What is more, if it is outside of the kidney there is a good chance that they won't have to remove the kidney.  And, as for as the 99% sure it is rcc, i am 99% sure he cannot be 99% sure.  It may be, but no one knows until the surgery is done. With that said, we shall see. But if it is rcc, then the chances are very good that at that size it is curable.  Please let us know how it goes from here. We will be praying for you!!

  • Djinnie
    Djinnie Member Posts: 945
    kajunnana said:

    Well today marks the day of

    Well today marks the day of our new journey! I say "our" because Kenneth will not have to fight this alone!!! Today we went to the urologist and he told us that he is 99% sure that it is RCC. He was a little upset that the ER did not do the second CT with contrast dye so we are going to do a CT/PET Monday morning early!! He wants to just make sure it is just in Kenneths left kidney. So as I said today marks a new beginning! 

    Here's to a good new beginning!!

    Kajunnana,

    You have had so much to deal with, I have no doubt you had times when you have felt you can't take much more. It is in these moments we discover a deep rooted strength and determination to fight and protect, I know yours is being tested to the hilt but you are proving yourself to be one tough lady!

    Angec is right, cancer is not something we want to deal with, and there is a chance you are not. The main thing is that whatever it turns out to be it has been caught very early. If it is cancer it is still very small and fortunately in an easy area when it comes to surgical removal. After the next scan things should start to proceed quickly, and then in no time at all Kenneth will be on the road to recovery. I hope all goes well on Monday, I am keeping you in my thoughts and prayers!

    By the way I was just curious about Kenneth's kidney stone, is it from too much uric acid or calcium? Here in France if they are due to uric acid they are easily treated with Vichy water. My husband had several including one very large stone which caused a lot of pain. He has been drinking the mineral water every day and the stones have dissolved to next to nothing now. Just thought I would add that!

    You both take care, you will get through this:)

     

    Djinnie x

  • kajunnana
    kajunnana Member Posts: 17
    Hello everyone.
    Well me made

    Hello everyone.

    Well me made it back from our vacation which was not the best. I tried to keep Kenneths mind off of everything but it did not work, which I understand because it was hard for me to do the same.

    So things are starting to move a little fast now! Kenneth did another CT w/wo contrast Monday, we had to go to the dr yesterday and we scheduled surgery for Aug 27. Thats the only thing we don't like but it's okay because we can get everything in line & ready!

    I had more questions for the dr which he did not mind at all answering! And like the dr said if the tumor was found next year then we would've had a lot more problems. He did tell me it is a stage 1 (which I think is good, if that makes since) so now we just have to wait but the 27 of August will be her before we know it! 

  • GSRon
    GSRon Member Posts: 1,303
    kajunnana said:

    Hello everyone.
    Well me made

    Hello everyone.

    Well me made it back from our vacation which was not the best. I tried to keep Kenneths mind off of everything but it did not work, which I understand because it was hard for me to do the same.

    So things are starting to move a little fast now! Kenneth did another CT w/wo contrast Monday, we had to go to the dr yesterday and we scheduled surgery for Aug 27. Thats the only thing we don't like but it's okay because we can get everything in line & ready!

    I had more questions for the dr which he did not mind at all answering! And like the dr said if the tumor was found next year then we would've had a lot more problems. He did tell me it is a stage 1 (which I think is good, if that makes since) so now we just have to wait but the 27 of August will be her before we know it! 

    Sorry that the vacation was

    Sorry that the vacation was not great. But yes stage 1 is very good. The waiting is the hardest part. However this verifies that the tumor is small and there is no reason to rush. Ron

  • dhs1963
    dhs1963 Member Posts: 513
    GSRon said:

    Sorry that the vacation was

    Sorry that the vacation was not great. But yes stage 1 is very good. The waiting is the hardest part. However this verifies that the tumor is small and there is no reason to rush. Ron

    When the Dr's rush is when you get scared

    There are times when the Doctors see something, and say we have to deal with this now...if you have a kidney mass, and they drop everything to put you at the front of the line, that is when to get worried.  

  • GSRon
    GSRon Member Posts: 1,303
    dhs1963 said:

    When the Dr's rush is when you get scared

    There are times when the Doctors see something, and say we have to deal with this now...if you have a kidney mass, and they drop everything to put you at the front of the line, that is when to get worried.  

    DHS, said it better than I

    DHS, said it better than I did, thanks..  

    Yes, in my case there was a need to get it done ASAP.  But all the surgical room time was booked for a few weeks...  My surgeon said "do not worry.. we are a teaching hospital, and we teach every kind of surgery.. we will just bump someone getting cosmetic surgery, your's is more important.."  A couple of days later I had a date and time..

    Ron

  • Caregiver_in_GA
    Caregiver_in_GA Member Posts: 1
    Never stop questioning

    Amy,

    My husbands story started much the same way.  A random kidney stone in the left kidney showed a mass in the right kidney during an xray.  Several weeks later they determined an 11cm tumor in the right kidney needed to be removed.  Pathology confirmed cancer but they assured us it was stage 1 and all he had to do was come for his 6mos checkups to monitor for problems for the next 3 years.

    That was 2012.  In January this year it was determined that the kidney cancer has spread to his lungs, lung lining and chest wall.  He is now stage 4 and Interluken treatments did not cure him.  My post-surgery research leads me to believe that the size of the tumor they removed would have put him at stage 2 in 2012 which would have made him eligible for treatment such as chemo as a preventative measure.  I can't help ask the question that if they had staged him correctly we may not be where we are now.  I am kicking myself for not asking more questions when he was first diagnosed and for not insisting on a PET scan when we heard how big the tumor was.  He is currently on a Votrient regiment which is not pleasant and we go for our first PET scan next week to determine if the drug is working or not.

    Knowledge is power and no question is stupid.  Ask EVERYTHING.  Question EVERYTHING.  And if you don't like what you are hearing get a 2nd and 3rd opinion until you feel comfortable with the people you are working with and the information you are getting.  Our 1st oncologist who removed his kidney was our 2nd opinion and I liked him - but in hindsight he was very dismissive after surgery was done and overly confident that we were done and everything was ok.  Didn't want to take the time to listen to my concerns or even my husbands.  If it is cancer and you get over the initial shock I find having as much information as possible really helps me as a caregiver.  My husband needs to focus on getting well and dealing with the physical effects of the disease.  I see my job as handling everything else he's just not up to such as scheduling, question asking, research, and dealing with the insurance companies and billing issues.  I won't BS you - it's a full time job - and I've had more than one moment where I'm ready to run my head into a paper shredder in frustration and fear.  Surround you and your husband with a good support network and don't be afraid to ask for help.  It makes a world of difference.

    You are in my prayers.  Good luck to you both.

  • GSRon
    GSRon Member Posts: 1,303

    Never stop questioning

    Amy,

    My husbands story started much the same way.  A random kidney stone in the left kidney showed a mass in the right kidney during an xray.  Several weeks later they determined an 11cm tumor in the right kidney needed to be removed.  Pathology confirmed cancer but they assured us it was stage 1 and all he had to do was come for his 6mos checkups to monitor for problems for the next 3 years.

    That was 2012.  In January this year it was determined that the kidney cancer has spread to his lungs, lung lining and chest wall.  He is now stage 4 and Interluken treatments did not cure him.  My post-surgery research leads me to believe that the size of the tumor they removed would have put him at stage 2 in 2012 which would have made him eligible for treatment such as chemo as a preventative measure.  I can't help ask the question that if they had staged him correctly we may not be where we are now.  I am kicking myself for not asking more questions when he was first diagnosed and for not insisting on a PET scan when we heard how big the tumor was.  He is currently on a Votrient regiment which is not pleasant and we go for our first PET scan next week to determine if the drug is working or not.

    Knowledge is power and no question is stupid.  Ask EVERYTHING.  Question EVERYTHING.  And if you don't like what you are hearing get a 2nd and 3rd opinion until you feel comfortable with the people you are working with and the information you are getting.  Our 1st oncologist who removed his kidney was our 2nd opinion and I liked him - but in hindsight he was very dismissive after surgery was done and overly confident that we were done and everything was ok.  Didn't want to take the time to listen to my concerns or even my husbands.  If it is cancer and you get over the initial shock I find having as much information as possible really helps me as a caregiver.  My husband needs to focus on getting well and dealing with the physical effects of the disease.  I see my job as handling everything else he's just not up to such as scheduling, question asking, research, and dealing with the insurance companies and billing issues.  I won't BS you - it's a full time job - and I've had more than one moment where I'm ready to run my head into a paper shredder in frustration and fear.  Surround you and your husband with a good support network and don't be afraid to ask for help.  It makes a world of difference.

    You are in my prayers.  Good luck to you both.

    Hi C in Ga...  At 11 CM, that

    Hi C in Ga...  At 11 CM, that is Stage 3.  But there is no adjuvant (preventative) drugs that are effective for RCC at this point.  You did not mention if it was Clear Cell or not, but CC is the most common.  

    So the only thing of concern is the level of follow up.  From what you are saying, he is not in the hands of an experienced enough RCC Oncologist... which means if it were me, I would find one and get an appointment for a second opinion, ASAP.

    Good Luck..

    Ron

  • kajunnana
    kajunnana Member Posts: 17

    Never stop questioning

    Amy,

    My husbands story started much the same way.  A random kidney stone in the left kidney showed a mass in the right kidney during an xray.  Several weeks later they determined an 11cm tumor in the right kidney needed to be removed.  Pathology confirmed cancer but they assured us it was stage 1 and all he had to do was come for his 6mos checkups to monitor for problems for the next 3 years.

    That was 2012.  In January this year it was determined that the kidney cancer has spread to his lungs, lung lining and chest wall.  He is now stage 4 and Interluken treatments did not cure him.  My post-surgery research leads me to believe that the size of the tumor they removed would have put him at stage 2 in 2012 which would have made him eligible for treatment such as chemo as a preventative measure.  I can't help ask the question that if they had staged him correctly we may not be where we are now.  I am kicking myself for not asking more questions when he was first diagnosed and for not insisting on a PET scan when we heard how big the tumor was.  He is currently on a Votrient regiment which is not pleasant and we go for our first PET scan next week to determine if the drug is working or not.

    Knowledge is power and no question is stupid.  Ask EVERYTHING.  Question EVERYTHING.  And if you don't like what you are hearing get a 2nd and 3rd opinion until you feel comfortable with the people you are working with and the information you are getting.  Our 1st oncologist who removed his kidney was our 2nd opinion and I liked him - but in hindsight he was very dismissive after surgery was done and overly confident that we were done and everything was ok.  Didn't want to take the time to listen to my concerns or even my husbands.  If it is cancer and you get over the initial shock I find having as much information as possible really helps me as a caregiver.  My husband needs to focus on getting well and dealing with the physical effects of the disease.  I see my job as handling everything else he's just not up to such as scheduling, question asking, research, and dealing with the insurance companies and billing issues.  I won't BS you - it's a full time job - and I've had more than one moment where I'm ready to run my head into a paper shredder in frustration and fear.  Surround you and your husband with a good support network and don't be afraid to ask for help.  It makes a world of difference.

    You are in my prayers.  Good luck to you both.

    Thank you! Praying that the

    Thank you! Praying that the PET scan shows something postive, Y'all are in my prayers!

    Amy 

  • kajunnana
    kajunnana Member Posts: 17
    Hello everyone its been

    Hello everyone its been awhile since I wrote. Things feel like they are dragging! We go this Friday for pre-op, and the 27th we go in to do surgery! (I say we because it's not just Kenneth that has the cancer) But I do have a question the past week Kenneth has really been hurting on the left side where the tumor is,  has anyone have this happen before I am worried the the tumor may be growing!?!?!  The pain is so bad that he is starting to take his pain killers & that is not him Kenneth does not like to take any kind of medicines. I'm just so worried!

  • foxhd
    foxhd Member Posts: 3,181
    kajunnana said:

    Hello everyone its been

    Hello everyone its been awhile since I wrote. Things feel like they are dragging! We go this Friday for pre-op, and the 27th we go in to do surgery! (I say we because it's not just Kenneth that has the cancer) But I do have a question the past week Kenneth has really been hurting on the left side where the tumor is,  has anyone have this happen before I am worried the the tumor may be growing!?!?!  The pain is so bad that he is starting to take his pain killers & that is not him Kenneth does not like to take any kind of medicines. I'm just so worried!

    pain

    I went from no signs or symptoms to hospital admission thru the ER. Because the pain became unmanagable at home. I believe I needed IV dilauded for pain control. I never had any pain what so ever until then. Hours earlier I was weight training and running like always. Let him know that now is no time to to deal with pain that isn't going to pass until he recovers from surgery. I remember how much it hurt.

  • icemantoo
    icemantoo Member Posts: 3,358 **
    foxhd said:

    pain

    I went from no signs or symptoms to hospital admission thru the ER. Because the pain became unmanagable at home. I believe I needed IV dilauded for pain control. I never had any pain what so ever until then. Hours earlier I was weight training and running like always. Let him know that now is no time to to deal with pain that isn't going to pass until he recovers from surgery. I remember how much it hurt.

    Pain

    Amy,

     

    The pain may or may not be related to the tumor. Make  sure yo bring it up at your appointment Friday. Nobody said this will be easy, but with a small tumor your prognosis for a full recovery from the surgery alone is excellant.

     

    Icemantoo

  • todd121
    todd121 Member Posts: 1,448
    GSRon said:

    Hi C in Ga...  At 11 CM, that

    Hi C in Ga...  At 11 CM, that is Stage 3.  But there is no adjuvant (preventative) drugs that are effective for RCC at this point.  You did not mention if it was Clear Cell or not, but CC is the most common.  

    So the only thing of concern is the level of follow up.  From what you are saying, he is not in the hands of an experienced enough RCC Oncologist... which means if it were me, I would find one and get an appointment for a second opinion, ASAP.

    Good Luck..

    Ron

    Staging and Tumor Size

    I've seen this said a couple of times about size and staging, and it's not accurate. Forgive me, but I think we just have to be really accurate about this. The stages are very well defined.

    Stage 3 refers not to size, but whether the cancer has exited the kidney either outside the kidney, but usually/often by invading veins or arteries inside the kidney. If it has, but is only 1 tumor in the kidney, it's stage 3. If it has not (the tumor is 1 tumor, fully contained but has not grown outside the kidney either outside the kidney proper, or into the veins or arteries in the kidney) then it's divided by size. Stage 1 if the tumor is < 7 cm. Stage 2 if the tumor >= 7 cm.

    Quite often the really large tumors have grown into the veins, so a tumor as large as 11 cm is quite often Stage 3, but not necessarily. And small tumors can be Stage 3, depending on their location.

    My tumor was 6.8 cm, but Stage 3 because it had grown into some of the tiny veins. That's why I paid such close attention to this criteria. At first I was diagnosed Stage 1, but when the pathology came back I was Stage 3 and it was not because my tumor was larger, but because they found it inside some of the tiny veins.

    An 11 cm tumor is definitely NOT stage 1. It's at least stage 2. He might have been eligible for adjuvant therapy drug trials, but none have been proven to be effective so it's doubtful it would have helped.

    Stage and Grade are important for prognosis and follow-up care.

    Todd

  • todd121
    todd121 Member Posts: 1,448
    kajunnana said:

    Hello everyone its been

    Hello everyone its been awhile since I wrote. Things feel like they are dragging! We go this Friday for pre-op, and the 27th we go in to do surgery! (I say we because it's not just Kenneth that has the cancer) But I do have a question the past week Kenneth has really been hurting on the left side where the tumor is,  has anyone have this happen before I am worried the the tumor may be growing!?!?!  The pain is so bad that he is starting to take his pain killers & that is not him Kenneth does not like to take any kind of medicines. I'm just so worried!

    Primary tumors are very slow growing

    The pain might be from the tumor, but it's really pretty doubtful. Usually pain with this type of tumor happens when you have active bleeding and some blood clots are passing through the ureter. That can be as painful as a kidney stone passing. I was passing blood clots like that, and it was painful.

    These tumors grow really slow. It's doubtful it could grow fast enough to start causing really intense pain.

    That's not to say the pain isn't caused from the tumor, but I think your fear about the tumor growing fast and causing the pain is unlikely. Masses tend to grow at rates of 0.1 to 0.8 cm per year (I got this off a website from the director of urology at UCI medical school), so that's less than 1/3" per year even on the fast growing side, which is really, really small month-to-month.

    Todd

  • kajunnana
    kajunnana Member Posts: 17
    Well our luck just keeps on

    Well our luck just keeps on the BAD track! Kenneth had to do an ultrasound Tuesday of the bladder and kidneys. I get a call from the nurse yesterday telling me that Kenneth needs to go in because something is wrong with his bladder!!! My heart just sank! Then she told me that a spot showed up in his mid left lung an x-rays. So long story short I brought Kenneth in today to do a procedure and the doctor confirmed that he also has bladder cancer. But a good thing is that the doctor thinks that he will be able to remove the cancer from the bladder then the kidney (Wednesday). Next we have to see about the spot on the lung!!! 

    I think I'm about to loss my mind!!! I feel so helpless!Cry

  • Phredswife
    Phredswife Member Posts: 162
    kajunnana said:

    Well our luck just keeps on

    Well our luck just keeps on the BAD track! Kenneth had to do an ultrasound Tuesday of the bladder and kidneys. I get a call from the nurse yesterday telling me that Kenneth needs to go in because something is wrong with his bladder!!! My heart just sank! Then she told me that a spot showed up in his mid left lung an x-rays. So long story short I brought Kenneth in today to do a procedure and the doctor confirmed that he also has bladder cancer. But a good thing is that the doctor thinks that he will be able to remove the cancer from the bladder then the kidney (Wednesday). Next we have to see about the spot on the lung!!! 

    I think I'm about to loss my mind!!! I feel so helpless!Cry

    You are not losing it. YOU are awesome!

    So sorry to hear your bad news about your hubby. It is good they are making plans to remove the cancer and glad they found it now. You are not going crazy, it is totally normal to worry about those we love. Your husband is very lucky to have you.

    Hope you are getting some support during this stressful time and that people are rallying around you. Go to talk to a counsellor if you can get the time. Talking to someone helps even when you are so overwhelmed you think you can't say much. I have found this helpful. I get really stressed and my hubby is NED at present! He did end up in the emergency department 2 days ago with unexplained chest pains so I understand being worried! I will be praying for you.

    Hugs Melissa