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Scared & Worried! :(

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  • 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: 3,357 **
    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

  • kajunnana
    kajunnana Member Posts: 17

    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

    thanks Phredswife for the

    thanks Phredswife for the kind words. Hope everything gets better for your husband I will keep y all in my prayers.

  • Phredswife
    Phredswife Member Posts: 162
    kajunnana said:

    thanks Phredswife for the

    thanks Phredswife for the kind words. Hope everything gets better for your husband I will keep y all in my prayers.

    Thank you. He seems fine now

    Thank you. He seems fine now so I probably shouldn't get so worried.  His type of cancer was nasty so everytime he sneezes or does anything different to normal I panic a bit! We have been told to take him back to ER if he does it again. So far so good!! You take care!!Smile

  • Ree_Maryland
    Ree_Maryland Member Posts: 161
    todd121 said:

    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

    what is b after the 1?I had stage 1b but a big tumor

    I had partial lap done on April 21st . the path said it was a 1b sage 1, just curious . thanks 

  • kajunnana
    kajunnana Member Posts: 17
    Hello everyone its been

    Hello everyone its been awhile since I wrote. It's been a little crazy to say the least! Kennth did well during surgery they did the kidney first then the bladder. That was the longest 2 hours of my life!!! The dr. told me that we may have been able to go home the next day which would've been Thursday, but we ended up staying until Friday. Friday morning the dr came in & checked Kenneth and said he can go home! He also told us that the pathology report came back and the bladder cancer was what he expected, but the kidney was more aggressive than he thought! What a shocker!!! When we first went to this dr. he told me (after I asked a lot of questions) that after he would remove the tumor from the kidney that Kenneth would be cured! Well now he tells us that he has to watch him very closely.

    But I have done every thing I need to do and we will be going to MD Anderson either this coming week or next. Maybe they will give us more information and check the spot on Kenneth lung, which his dr has never mentioned! So we are keeping our fingers crossed! 

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

    Hello everyone its been

    Hello everyone its been awhile since I wrote. It's been a little crazy to say the least! Kennth did well during surgery they did the kidney first then the bladder. That was the longest 2 hours of my life!!! The dr. told me that we may have been able to go home the next day which would've been Thursday, but we ended up staying until Friday. Friday morning the dr came in & checked Kenneth and said he can go home! He also told us that the pathology report came back and the bladder cancer was what he expected, but the kidney was more aggressive than he thought! What a shocker!!! When we first went to this dr. he told me (after I asked a lot of questions) that after he would remove the tumor from the kidney that Kenneth would be cured! Well now he tells us that he has to watch him very closely.

    But I have done every thing I need to do and we will be going to MD Anderson either this coming week or next. Maybe they will give us more information and check the spot on Kenneth lung, which his dr has never mentioned! So we are keeping our fingers crossed! 

    Well, glad the surgery is

    Well, glad the surgery is over and went pretty straight forward.  You should get a copy of the Pathology report, this will explain things a little better. I had been quiet on the one comment you made, but perhaps it is time to tell you that currently there is no cure for Kidney Cancer. I do not know  what doctor said cured, but that sadly is not true.

     However there are some good treatments, should it recur.  Small tumors often never recur, but not always.  This is why regular follow ups are important.  How frequent usually depends on the Pathology report.  Still the future has a very bright light.  MDA is one of the best places to go to.  It is important that you stay with MDA if possible for follow ups.  They are experts.  Most local Oncologists do not have the needed Kidney Cancer experience.

    Good Luck

    Ron

  • sblairc
    sblairc Member Posts: 585
    GSRon said:

    Well, glad the surgery is

    Well, glad the surgery is over and went pretty straight forward.  You should get a copy of the Pathology report, this will explain things a little better. I had been quiet on the one comment you made, but perhaps it is time to tell you that currently there is no cure for Kidney Cancer. I do not know  what doctor said cured, but that sadly is not true.

     However there are some good treatments, should it recur.  Small tumors often never recur, but not always.  This is why regular follow ups are important.  How frequent usually depends on the Pathology report.  Still the future has a very bright light.  MDA is one of the best places to go to.  It is important that you stay with MDA if possible for follow ups.  They are experts.  Most local Oncologists do not have the needed Kidney Cancer experience.

    Good Luck

    Ron

    Isn't surgery curative in SOME instances?

    I was under the impression that surgery can be a cure for kidney cancer. While you may never know for sure (until it comes back as metastic disease or local recurrence). Do you mean that there is no cure for metastic disease? I'm never a fan when surgeons throw the word "cure" around so loosely, but it is possible to be cured from surgery. 

  • kajunnana
    kajunnana Member Posts: 17
    GSRon said:

    Well, glad the surgery is

    Well, glad the surgery is over and went pretty straight forward.  You should get a copy of the Pathology report, this will explain things a little better. I had been quiet on the one comment you made, but perhaps it is time to tell you that currently there is no cure for Kidney Cancer. I do not know  what doctor said cured, but that sadly is not true.

     However there are some good treatments, should it recur.  Small tumors often never recur, but not always.  This is why regular follow ups are important.  How frequent usually depends on the Pathology report.  Still the future has a very bright light.  MDA is one of the best places to go to.  It is important that you stay with MDA if possible for follow ups.  They are experts.  Most local Oncologists do not have the needed Kidney Cancer experience.

    Good Luck

    Ron

    Thanks GSRon we sure will

    Thanks GSRon we sure will stay with MDA! Its only 3 1/2 hours away but if I had to go 24 horus away I would!

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

    Isn't surgery curative in SOME instances?

    I was under the impression that surgery can be a cure for kidney cancer. While you may never know for sure (until it comes back as metastic disease or local recurrence). Do you mean that there is no cure for metastic disease? I'm never a fan when surgeons throw the word "cure" around so loosely, but it is possible to be cured from surgery. 

    Sblairc... sorry,  but

    Sblairc... sorry,  but surgery is not considered a cure for RCC, it is a treatment.  I have heard of doctors telling their patients they are cured.  Any doctor that says that needs to be ahem "slapped" on the wrist.  

    However small / low grade tumors usually do not recur.  This is an important distinction of cured Vs no recurrance (or Mets).  And yes, the statistics are in the 90+% range for the low / low tumor Pathology.  But unless it is 100% then a recurrance is possible, which is why the follow up is important, regardless.  There are patients here that were told they were cured only to have a recurrance some time later.  Good follow up is meant to catch such recurrance early and thus make it easier to treat. 

    Cured to many, implies no follow up is needed.  The correct term is either NED or NVED, for No Evidence of Disease, or No Visible Evidence of Disease.  Some lucky folks are NED forever.

    Sorry if this bursts your bubble.. but it is, what it is.. 

    Ron

  • sblairc
    sblairc Member Posts: 585
    GSRon said:

    Sblairc... sorry,  but

    Sblairc... sorry,  but surgery is not considered a cure for RCC, it is a treatment.  I have heard of doctors telling their patients they are cured.  Any doctor that says that needs to be ahem "slapped" on the wrist.  

    However small / low grade tumors usually do not recur.  This is an important distinction of cured Vs no recurrance (or Mets).  And yes, the statistics are in the 90+% range for the low / low tumor Pathology.  But unless it is 100% then a recurrance is possible, which is why the follow up is important, regardless.  There are patients here that were told they were cured only to have a recurrance some time later.  Good follow up is meant to catch such recurrance early and thus make it easier to treat. 

    Cured to many, implies no follow up is needed.  The correct term is either NED or NVED, for No Evidence of Disease, or No Visible Evidence of Disease.  Some lucky folks are NED forever.

    Sorry if this bursts your bubble.. but it is, what it is.. 

    Ron

    Yes. Very important distinction. Thank you.

    Very well put, Ron. Thank! "Cured to many, implies no follow up is needed" This would be a huge mistake, with this sneaky scourge of a cancer that is for sure. We were lucky to have a GREAT surgeon that explained everything to us in realistic terms, and was very direct and forthcoming about the locally advanced nature of a T3a Stage (I hope I used the correct term here). 

  • Jojo61
    Jojo61 Member Posts: 1,309
    Thinking about you and hoping

    Thinking about you and hoping that all goes well for you and your husband.

    Big hugs

    Jojo

  • sblairc
    sblairc Member Posts: 585
    How is it going?

    Hi Amy, 

     

    Just wondering how you and your family are doing. Thinking of you all.