anyone out there with papillary cell?

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Comments

  • Limelife50
    Limelife50 Member Posts: 476
    #22
    Phoenix Rising said:

    Attitude adjustment is key!
    Kathy,
    I used to be hard-lined and if I am perfectly honest with myself, I have been giving folks unecessary grief since 6th grade. As the saying goes, "Hurt people, hurt people." I was always a short, skinny, (and smart)kid and I got plenty grief for it. The more I got, the more I gave to anyone who was weaker than I, not necessarily in size, but weaker in personality. I did not tolerate others mistakes and shortcomings as a child or teen, and grew into an uncompromising adult.

    That is all changed now and it is SO much easier and feels so much better to be nice, understanding, complimentary, giving, and caring. I have more patience for other's mistakes and I no longer mentally attack those who I think fall short. I also realize the human-ness (is that a word?) in everyone and show empathy more easily. From the lady at work who wears her skirts too short and flirts heavily with all the guys on the job, and none of the other ladies talk to her-- well we we don't know she was constantly molested as a child and knows no other way to communicate with men-- I have love in my heart for her; to the man who comes to work with wrinkled, worn and unlaundered clothes and can't concentrate, and his co-workers whisper about him and never invite him to lunch--- well we don't know he is still dealing with his wife's untimely death while he cares for his two elderly parents and a small child-- I have love in my heart for him.

    I smile everyday just because I am here, and that in itself, ain't so bad.

    Hi Phoenix
    Do you mind if i ask what was the size of your tumor when you had your nephrectomy and also was it low or high grade
  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    #23
    Phoenix Rising said:

    Attitude adjustment is key!
    Kathy,
    I used to be hard-lined and if I am perfectly honest with myself, I have been giving folks unecessary grief since 6th grade. As the saying goes, "Hurt people, hurt people." I was always a short, skinny, (and smart)kid and I got plenty grief for it. The more I got, the more I gave to anyone who was weaker than I, not necessarily in size, but weaker in personality. I did not tolerate others mistakes and shortcomings as a child or teen, and grew into an uncompromising adult.

    That is all changed now and it is SO much easier and feels so much better to be nice, understanding, complimentary, giving, and caring. I have more patience for other's mistakes and I no longer mentally attack those who I think fall short. I also realize the human-ness (is that a word?) in everyone and show empathy more easily. From the lady at work who wears her skirts too short and flirts heavily with all the guys on the job, and none of the other ladies talk to her-- well we we don't know she was constantly molested as a child and knows no other way to communicate with men-- I have love in my heart for her; to the man who comes to work with wrinkled, worn and unlaundered clothes and can't concentrate, and his co-workers whisper about him and never invite him to lunch--- well we don't know he is still dealing with his wife's untimely death while he cares for his two elderly parents and a small child-- I have love in my heart for him.

    I smile everyday just because I am here, and that in itself, ain't so bad.

    Inspiration
    Lovely stuff, Phoenix - please keep it coming.
  • Phoenix Rising
    Phoenix Rising Member Posts: 170
    #24
    Limelife50 said:

    Hi Phoenix
    Do you mind if i ask what was the size of your tumor when you had your nephrectomy and also was it low or high grade

    Size and Grade of pRCC
    Hi Limelife,
    I have never known (or paid attention to) the size of the tumor. I saw it in my copy of the physician's notes, but I have not seen that document for some time. I just looked at some of my other reports and it is not stated. When I accidentally run across that document, I will be sure to get back to you.

    I do, however, recall that when "Nurse Ratchett" (my urologist's PA) spoke with me about the disease in 2009, she said T2N3Mx, Fuhrman grade 3.
  • Limelife50
    Limelife50 Member Posts: 476
    #25
    Phoenix Rising said:

    Size and Grade of pRCC
    Hi Limelife,
    I have never known (or paid attention to) the size of the tumor. I saw it in my copy of the physician's notes, but I have not seen that document for some time. I just looked at some of my other reports and it is not stated. When I accidentally run across that document, I will be sure to get back to you.

    I do, however, recall that when "Nurse Ratchett" (my urologist's PA) spoke with me about the disease in 2009, she said T2N3Mx, Fuhrman grade 3.

    Thanks Phoenix
    There is a reason why i have asked,my original dx at time of nephrectomy was RCC grade 2 to right kidney but also had a low grade TCC tumor removed from my bladder back in 10/11/11 now fast forward to 04/12 a tumor was discovered in my left kidney ,the path report for that tumor came back inconclusive with low grade papillary cells found
  • Phoenix Rising
    Phoenix Rising Member Posts: 170
    #26
    Limelife50 said:

    Thanks Phoenix
    There is a reason why i have asked,my original dx at time of nephrectomy was RCC grade 2 to right kidney but also had a low grade TCC tumor removed from my bladder back in 10/11/11 now fast forward to 04/12 a tumor was discovered in my left kidney ,the path report for that tumor came back inconclusive with low grade papillary cells found

    Size of tumor
    Limelife, I believe the tumor was fairly large because it was causing a great deal of pain... pain that is otherwise not realized with kidney cancer. The acute pain is what lead to my diagnosis.
  • pRCCWifey
    pRCCWifey Member Posts: 2
    #27
    Husband diagnosed with pRCC
    Hi There-
    I am new so I thought I would give this a try. My husband (44 yrs old) was just diagnosed with Papillary RCC. The great news is that is was caught by accident and it is only a stage 1. The grade is a 3 and it shows tumor necrosis. The pathology report does not tell us if it is type 1 or type 2. Wouldn't this be useful information for him to know and should we ask for that information? Maybe it doesn't matter overall. His oncologist wanted him to be part of a drug trial for Everolimus but the size of tumor was a few tenths of cm the wrong size (3.7cm and it needs to be 4cm), so he didn't qualify. The only proactive thing to do is regular scans. He is a couple weeks post-op (robotic laproscopic partial nephrectomy), so we are trying to understand it all still. He is my Handsome Hero and I sure would like him around for a very long time- especially for our 2 teenage daughters. Well, I found this site and it is helpful to read other experiences- this is so new and unexpected as it is (was)for you all. It sure puts life into perspective- to decide on a picnic in the mountains instead of doing house chores on the weekend. Thank you for any information you may have to share and good luck to everyone!
  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    #28
    pRCCWifey said:

    Husband diagnosed with pRCC
    Hi There-
    I am new so I thought I would give this a try. My husband (44 yrs old) was just diagnosed with Papillary RCC. The great news is that is was caught by accident and it is only a stage 1. The grade is a 3 and it shows tumor necrosis. The pathology report does not tell us if it is type 1 or type 2. Wouldn't this be useful information for him to know and should we ask for that information? Maybe it doesn't matter overall. His oncologist wanted him to be part of a drug trial for Everolimus but the size of tumor was a few tenths of cm the wrong size (3.7cm and it needs to be 4cm), so he didn't qualify. The only proactive thing to do is regular scans. He is a couple weeks post-op (robotic laproscopic partial nephrectomy), so we are trying to understand it all still. He is my Handsome Hero and I sure would like him around for a very long time- especially for our 2 teenage daughters. Well, I found this site and it is helpful to read other experiences- this is so new and unexpected as it is (was)for you all. It sure puts life into perspective- to decide on a picnic in the mountains instead of doing house chores on the weekend. Thank you for any information you may have to share and good luck to everyone!

    Papillary Wifey
    It's always nice to be able to welcome someone who's concerned with a comparatively favourable prognosis.

    You should definitely find out which type of pRCC you're dealing with - there's a bit of difference of prospects as between type 1 and type 2. As a papillary wifey, you might find it helpful to contact a papillary hubby, namely Matt on KIDNEY-ONC whose Wife, Tina is the same age as your Husband. Matt is a very helpful individual who has a wealth of information on the subject of pRCC.

    Having said that, do stick around here too. There are plenty of folks here to give you information and support. There are also people with great attitude. One comparative newcomer who has already contributed a lot is Phoenix Rising some of whose postings you can see above, on this thread. Since you may, at some stage, come across some depressing 'survival calculators', be armed with Phoenix's response (above)

    "I am refusing to listen, agree, or otherwise succumb to the end-of-you-life statistics and theories. Only God can make that decision."

    An equally feisty lady, who has been one of the most valued posters here for many years, is Donna Lee who elegantly captured a major reason for the invalidity of the survival statistics (out of date information) in this memorable formulation:

    "When you get into Statistics, remember we are the crew that is changing those numbers-by days, months and years-so think positively. And there are so many more options available today that weren't even in trials 6 years ago."

    It's true that we are the crew that's changing those numbers.

    Finally, I'm sure we all applaud your perspective "to decide on a picnic in the mountains instead of doing house chores on the weekend."
  • pRCCWifey
    pRCCWifey Member Posts: 2
    #29
    Texas_wedge said:

    Papillary Wifey
    It's always nice to be able to welcome someone who's concerned with a comparatively favourable prognosis.

    You should definitely find out which type of pRCC you're dealing with - there's a bit of difference of prospects as between type 1 and type 2. As a papillary wifey, you might find it helpful to contact a papillary hubby, namely Matt on KIDNEY-ONC whose Wife, Tina is the same age as your Husband. Matt is a very helpful individual who has a wealth of information on the subject of pRCC.

    Having said that, do stick around here too. There are plenty of folks here to give you information and support. There are also people with great attitude. One comparative newcomer who has already contributed a lot is Phoenix Rising some of whose postings you can see above, on this thread. Since you may, at some stage, come across some depressing 'survival calculators', be armed with Phoenix's response (above)

    "I am refusing to listen, agree, or otherwise succumb to the end-of-you-life statistics and theories. Only God can make that decision."

    An equally feisty lady, who has been one of the most valued posters here for many years, is Donna Lee who elegantly captured a major reason for the invalidity of the survival statistics (out of date information) in this memorable formulation:

    "When you get into Statistics, remember we are the crew that is changing those numbers-by days, months and years-so think positively. And there are so many more options available today that weren't even in trials 6 years ago."

    It's true that we are the crew that's changing those numbers.

    Finally, I'm sure we all applaud your perspective "to decide on a picnic in the mountains instead of doing house chores on the weekend."

    Thank you Texas-wedge for
    Thank you Texas-wedge for your thoughtful and informational response. I will check out the location of KIDNEY-ONC.. We are all about positive thinking and feel grateful for everyday that we are given together! Thank you again.
  • Justinb40y
    Justinb40y Member Posts: 22
    #30
    Michael6701 said:

    Papillary
    I had papillary type 2, stage 1, grade III. I had it removed a year ago with open-partial and my 6 month scan was okay; I am scheduled for my 1 year next week. I will probably insist on long term follow-up because I lost three siblings to papillary RCC.

    Hi

    Hi

    Hi

     

    I have same diagnosis like yours.what precaution I should take to avoid recurrence

    Thanks

  • Steve.Adam
    Steve.Adam Member Posts: 463 Member
    edited January 2018 #31
    Justinb40y said:

    Hi

    Hi

    Hi

     

    I have same diagnosis like yours.what precaution I should take to avoid recurrence

    Thanks

    Old thread

    Hi again Justin,

    You have posted to a message thread from 2012. Most people on this forum post messages for a few months then fade away. I only know one or two of the names here. You are not likely to get an answer from the original posters, though some new people might reply.

    Steve.

    P.S. I've been reading posts by Phoenix Rising. I wish I'd got to know her.

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