I'm new to this forum

hardo718
hardo718 Member Posts: 853 Member
in Kidney Cancer #1

What does "NED" mean?  My story:  my surgery (left partial nephrectomy via the da Vinci robot) was Oct. 5, 2012 and I was one of the lucky ones, Bob the Blob (as I refer to the tumor) was still barely encapsulated and my doctor was able to remove all of the cancer.  Usually sometime around the anniversary of my surgery I go into panic mode about recurrence possibilities, etc.   This past August I happened to read an article that stated that is pretty typical I guess, and I kept reminding myself of this and got through the fall without rushing to the doctor and requesting testing.  At this point I don't have to follow up until Sept of this year.  Tonight I got a phone call from my daughter, her mother-in-law has a 6 cm cyst on her kidney and it has sent me into a tail spin!!  I'm usually pretty optimistic and try to keep my fears in check.  Damn cancer.

Comments

  • icemantoo
    icemantoo Member Posts: 3,361 Member
    #2
    Welcome

    hardo,

     

    Welcome to the club which no one in their right mind would volunteer to join. NED is everyone's favorite Uncle who stands for No Evidence of Disease and he hopefully  visits and is included in most scans.

     

    With your surgery behind you, you will be able to tell your daughter's mother in law how it went. Not fun, but it beats the alternative.

     

     

     

    Icemantoo

  • Pandabear1011
    Pandabear1011 Member Posts: 123 Member
    #3
    Hi Hardo..

    NED is what we all want....(No Evidence of Disease).  I know what you mean about the anxiety. I will be having my 6-month scans on January 13th and I have "scanxiety". What was the size and grade of your cancer? Mine was Stage 1 Grade 2 and 6 cm in greatest dimension. I had my nephrectomy on my right kidney on 5/22/14. It was confined to the kidney. Fear of recurrence is something we all experience. It really helps to come here and talk with the nice people on this board. They completely understand....:)

  • hardo718
    hardo718 Member Posts: 853 Member
    #4
    icemantoo said:

    Welcome

    hardo,

     

    Welcome to the club which no one in their right mind would volunteer to join. NED is everyone's favorite Uncle who stands for No Evidence of Disease and he hopefully  visits and is included in most scans.

     

    With your surgery behind you, you will be able to tell your daughter's mother in law how it went. Not fun, but it beats the alternative.

     

     

     

    Icemantoo

    Thank you!!

    For explaining NED.  And yes, I'll will be looking forward to his return, undoubtedly! 

    I'm so willing to share with Angela (my daughter's mother-in-law) but right now she's pretty resistant to any input.  I'm sure she's feeling a bit overwhelmed with the initial diagnosis, she was only expecting to hear she had gallstones. 

  • hardo718
    hardo718 Member Posts: 853 Member
    #5
    Pandabear1011 said:

    Hi Hardo..

    NED is what we all want....(No Evidence of Disease).  I know what you mean about the anxiety. I will be having my 6-month scans on January 13th and I have "scanxiety". What was the size and grade of your cancer? Mine was Stage 1 Grade 2 and 6 cm in greatest dimension. I had my nephrectomy on my right kidney on 5/22/14. It was confined to the kidney. Fear of recurrence is something we all experience. It really helps to come here and talk with the nice people on this board. They completely understand....:)

    Scanxiety?

    Smile  I have to catch up on all the new vocabulary.  Thank you as well for defining NED.

    The size of "Bob the Blob", relatively small, about 3 cm.  Also a Stage 1 & Grade 2.  I'm so thankful I listened to my body and my doctor didn't just blow off my symptoms.  I've worked in the healthcare field for 30+ years, and know all too well that sometimes patient's aren't really heard. 

    Regarding my fears, I am looking forward to hearing how other people cope with theirs.  I wonder frequently if anyone else feels like the remaining part of the kidney feels like the "size of Texas", is how I describe it.  When I described that to my surgeon he laughed and said no one has stated it that way before but that others have mentioned that things don't feel the same as prior to surgery, but he also said that after 2 years or so either the feeling goes away or people adjust to the feeling and never mention it again.  And by the way, on my scans the remaining kidney looks perfectly normal except for the clips. 

    My surgeon also tells me I'm the only one that has ever thanked him for the four extra belly buttons!  Surprised

  • icemantoo
    icemantoo Member Posts: 3,361 Member
    #6
    hardo718 said:

    Scanxiety?

    Smile  I have to catch up on all the new vocabulary.  Thank you as well for defining NED.

    The size of "Bob the Blob", relatively small, about 3 cm.  Also a Stage 1 & Grade 2.  I'm so thankful I listened to my body and my doctor didn't just blow off my symptoms.  I've worked in the healthcare field for 30+ years, and know all too well that sometimes patient's aren't really heard. 

    Regarding my fears, I am looking forward to hearing how other people cope with theirs.  I wonder frequently if anyone else feels like the remaining part of the kidney feels like the "size of Texas", is how I describe it.  When I described that to my surgeon he laughed and said no one has stated it that way before but that others have mentioned that things don't feel the same as prior to surgery, but he also said that after 2 years or so either the feeling goes away or people adjust to the feeling and never mention it again.  And by the way, on my scans the remaining kidney looks perfectly normal except for the clips. 

    My surgeon also tells me I'm the only one that has ever thanked him for the four extra belly buttons!  Surprised

    Full and complete recovery

    hardo,

     

    At 3 cm you are scheduled for a full and complete recovery from the surgery alone (barring the unexpected). Even at 6cm the risk for recurrance is low, but there is still a small risk and a lot depends on the pathology. Encourage Angela to join our board. Many members are doing fine even with blobs twice the size of Bob.

     

     

    Icemantoo

  • Pandabear1011
    Pandabear1011 Member Posts: 123 Member
    #7
    If it helps...

    Hi, Like I commented above my tumor was 6 cm just like Angela's. My doc at MD Anderson told me that I have a 95% chance of it not coming back. It was only a grade 2 out of 4. Which they told me is as good as it gets. He said they rarely ever see Grade 1. Feel free to pass my story on to Angela. Hopefully it will bring her some comfort. You should also take some comfort in that your tumor was only 3 cm and a grade 2 as well!

  • pamstayner
    pamstayner Member Posts: 111 Member
    #8
    Hello Hardo

    and glad you are here to learn how to handle things too.  I had kidney cancer for 9 days. They told me it was cancer before they removed my right kidney October of 2012.  They said they got it all... so I did not have it any more, right?

    Nope.. it came back.  I found this site and also Smart Patients.  Between them both, I learned so much, and continue to learn. Especially about handling scanxiety.   Seems everbody has it , stage 1 or stage 4.  

    I find comfort coming here, from those who share news of their scans, and what they do next.  Then those same people, report the next news, good or bad, and what they do next.  And here they still are, 3 years later, sharing scan news, and what they are doing now.  Makes me sleep better, knowing what my next step could be, and that is good enough because there are so may things to do next.. and these people here are doing them.  

    Relax.  There are so many good options.  Amd more are becoming available this year.

    Pam

     

  • hardo718
    hardo718 Member Posts: 853 Member
    #9
    Update....

    .....on Angela.  So, 2 doctors have agreed that the cyst is 6 cm but it's been there for a VERY long time and doesn't need to come out.  She's still in a panic and wants it out.  I'm not quite sure what to advise.  I'm sure if she keeps searching, eventually she will find someone to do surgery, but maybe that's not ideal?  In the meantime, I just keep praying.

    Me on the otherhand, I'm well.  My biggest struggle is waiting until fall for repeat scan & chest x-ray. 

  • APny
    APny Member Posts: 1,995 Member
    #10
    hardo718 said:

    Update....

    .....on Angela.  So, 2 doctors have agreed that the cyst is 6 cm but it's been there for a VERY long time and doesn't need to come out.  She's still in a panic and wants it out.  I'm not quite sure what to advise.  I'm sure if she keeps searching, eventually she will find someone to do surgery, but maybe that's not ideal?  In the meantime, I just keep praying.

    Me on the otherhand, I'm well.  My biggest struggle is waiting until fall for repeat scan & chest x-ray. 

    I'm no doctor but 6 cm sounds

    I'm no doctor but 6 cm sounds pretty big to me. But I guess its location and nature (I assume shows up as harmless cyst) causes no problems for her so they are leaving it alone. How do they know it's been there a very long a time?

  • Footstomper
    Footstomper Member Posts: 1,237 Member
    #11
    APny said:

    I'm no doctor but 6 cm sounds

    I'm no doctor but 6 cm sounds pretty big to me. But I guess its location and nature (I assume shows up as harmless cyst) causes no problems for her so they are leaving it alone. How do they know it's been there a very long a time?

    6cm

    Still a littlun, smaller han your little finger

  • hardo718
    hardo718 Member Posts: 853 Member
    #12
    APny said:

    I'm no doctor but 6 cm sounds

    I'm no doctor but 6 cm sounds pretty big to me. But I guess its location and nature (I assume shows up as harmless cyst) causes no problems for her so they are leaving it alone. How do they know it's been there a very long a time?

    not sure

    How they know it's been there a long time.  I'm curious too and if I remember, in the fall when I go for my follow-up I'm going to ask.

  • Skagway Jack
    Skagway Jack Member Posts: 224 Member
    #13
    hardo718 said:

    not sure

    How they know it's been there a long time.  I'm curious too and if I remember, in the fall when I go for my follow-up I'm going to ask.

    As Cancers Go

    Hardo,   Kidney cancer is slow growing in its early stages at least.  So it would be an assumption by the medical team that it has been there a long time.  My tumor was 7 cm so mine had been around for awhile too.

     

    Cheers, Skagway

  • foroughsh
    foroughsh Member Posts: 779 Member
    #14
    hardo718 said:

    not sure

    How they know it's been there a long time.  I'm curious too and if I remember, in the fall when I go for my follow-up I'm going to ask.

    It depends on the tumor

    It depends on the tumor grade, as the grade I grows very slowly and the grade IV grows relatively fast. As mine was grade II i remmemver reading a paper and it was written a grade 2 's normal growth range is .8 cm yearly which means I had that damned tumore for one-third of my age

  • hardo718
    hardo718 Member Posts: 853 Member
    #15
    another update

    I met with a good friend this weekend who is an Ultrasound Tech and asked her how it can be determined if it's been there a long time and that it doesn't need to come out.  The following were her responses:

    As far as the cyst being there a long time she said that it was probably detected previously, some time ago.  (Sure enough, it was)

    That it doen't need to be removed?.....she said that a benign type cyst looks completely black on the inside, sort of like if you poked it with a pin it would just deflate and those typically aren't of any concern.  She said she's seen cysts like that that can be the size of a softball and the docs just do follow-up testing routinely to keep an eye on it.

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