Question about NED

Marynb
Marynb Member Posts: 1,118
in Anal Cancer #1
I noticed the post below that some of you have an actual date that you celebrate being NED. I don't know if I ever was or even if I am. What is the date you consider yourself NED? The last day of treatment? I never had scans until recently(big mistake), and there are some issues, so I don't even know if I ever was NED. I have had 2 cancers and I don't have a NED date for either cancer. People ask me if my cancer is in remission and I don't know what to say. What is remission?

Comments

  • mp327
    mp327 Member Posts: 4,440 Member
    #2
    Marynb

    I'm not sure there are any hard and fast rules about this, but I celebrate every year on the date of my last treatment, which is September 9th.  Tomorrow I will "officially" be a 5-year survivor!  I chose that date because it was very special to me, like crossing a finish line.  As for when the last cancer cell inside of me gave it up, I really don't know.  Does anybody really know?  At the insistence of my med onc and against the wishes of my rad onc, I had a PET scan about 5 weeks after my treatment ended.  My med onc was the one in charge and he won out.  Well, the scan showed activity, as my rad onc suspected it would, but it was thought to be inflammation/radiation damage.  I had a CT scan about 5 weeks later and it was clear.  So how do I really know what my NED date is?  I don't.  I just decided that September 9th. was my yearly date of celebration.

  • eihtak
    eihtak Member Posts: 1,473 Member
    #3
    Celebrate....

    In my family we have various "celebration of life" days! The day my 16yr old daughter survived what should have been a fatal car accident, the day another daughter survived a near drowning, and the day of my last radiation treatment is included in celebrating. There are a few others and sometimes we make light of it and add some minor thing just to have a reason to celebrate........I don't know if I was ever really NED myself since at my 1yr PET scan they found breast cancer, but I do look to "celebrate life" for a long long time!

  • jcruz
    jcruz Member Posts: 379 Member
    #4
    what a good question

    I've been thinking about this too.  I had a similar experience to Martha's with the PET scan coming too soon after treatment ended - dueling doctors.  My last radiation treatment was on Oct. 18.  I clearly remember that day and probably always will.  The scan was done in early Dec. and then I had a surgical biopsy following that because of the questions raised by the scan.  So it wasn't until the middle of January that I got the pathology results that showed no cancer.  I actually have not had any of my doctors use that term NED nor have I seen it on path reports or scan reports.  I remember that my med onc said you can now say that you are in remission and don't say you're cured.  Remission means that there are no signs or symptoms but cancer may still be in the body.  I think I'll use January as my one year date and I'm contemplating marking it with getting a tattoo.  

    Janet

  • pializ
    pializ Member Posts: 508 Member
    #5
    jcruz said:

    what a good question

    I've been thinking about this too.  I had a similar experience to Martha's with the PET scan coming too soon after treatment ended - dueling doctors.  My last radiation treatment was on Oct. 18.  I clearly remember that day and probably always will.  The scan was done in early Dec. and then I had a surgical biopsy following that because of the questions raised by the scan.  So it wasn't until the middle of January that I got the pathology results that showed no cancer.  I actually have not had any of my doctors use that term NED nor have I seen it on path reports or scan reports.  I remember that my med onc said you can now say that you are in remission and don't say you're cured.  Remission means that there are no signs or symptoms but cancer may still be in the body.  I think I'll use January as my one year date and I'm contemplating marking it with getting a tattoo.  

    Janet

    NED

    I would consider NED to mean thay the cancer is in remission I.e. that it has responded to treatment & that there is no current evidence of recurrence.

  • Marynb
    Marynb Member Posts: 1,118
    #6
    jcruz said:

    what a good question

    I've been thinking about this too.  I had a similar experience to Martha's with the PET scan coming too soon after treatment ended - dueling doctors.  My last radiation treatment was on Oct. 18.  I clearly remember that day and probably always will.  The scan was done in early Dec. and then I had a surgical biopsy following that because of the questions raised by the scan.  So it wasn't until the middle of January that I got the pathology results that showed no cancer.  I actually have not had any of my doctors use that term NED nor have I seen it on path reports or scan reports.  I remember that my med onc said you can now say that you are in remission and don't say you're cured.  Remission means that there are no signs or symptoms but cancer may still be in the body.  I think I'll use January as my one year date and I'm contemplating marking it with getting a tattoo.  

    Janet

    Tattoo
    I am just wondering what the tattoo will be? Good for you!
  • Lorikat
    Lorikat Member Posts: 681 Member
    #7
    jcruz said:

    what a good question

    I've been thinking about this too.  I had a similar experience to Martha's with the PET scan coming too soon after treatment ended - dueling doctors.  My last radiation treatment was on Oct. 18.  I clearly remember that day and probably always will.  The scan was done in early Dec. and then I had a surgical biopsy following that because of the questions raised by the scan.  So it wasn't until the middle of January that I got the pathology results that showed no cancer.  I actually have not had any of my doctors use that term NED nor have I seen it on path reports or scan reports.  I remember that my med onc said you can now say that you are in remission and don't say you're cured.  Remission means that there are no signs or symptoms but cancer may still be in the body.  I think I'll use January as my one year date and I'm contemplating marking it with getting a tattoo.  

    Janet

    Jcruz

    I have a tatoo on my foot to symbolize my cancer battle.  Mine is a butterfly with with a cancer ribbon as the body.  I want to have the word "faith" tattooed under it someday!  I'd put a picture if I knew how!  I'm 63 and the artist treated me so well..  of course didn't hurt that my young beautiful blond daughter had a matching one done at the same time  (LOL!)

     

    yeah!  Picture of tatoo is on my expressions page.  How do I get it to be my avatar?

  • Lorikat
    Lorikat Member Posts: 681 Member
    #8
    Lorikat said:

    Jcruz

    I have a tatoo on my foot to symbolize my cancer battle.  Mine is a butterfly with with a cancer ribbon as the body.  I want to have the word "faith" tattooed under it someday!  I'd put a picture if I knew how!  I'm 63 and the artist treated me so well..  of course didn't hurt that my young beautiful blond daughter had a matching one done at the same time  (LOL!)

     

    yeah!  Picture of tatoo is on my expressions page.  How do I get it to be my avatar?

    Tatoo

    image

    2013-09-09

    i did it, I think?

     

  • jcruz
    jcruz Member Posts: 379 Member
    #9
    Marynb said:

    Tattoo
    I am just wondering what the tattoo will be? Good for you!

    tattoo

    I'm thinking about a constellation - I would add a star each year as I pass the anniversary day.  So I'm looking at 5 star constellations or at 6 star ones giving myself one star for my beautiful daughter and then the 5 for the years.

    Lorikat, thanks for posting your picture.  I think I'll get my constellation on the inside of my wrist so I can see it all the time.

  • Lorikat
    Lorikat Member Posts: 681 Member
    #10
    Lorikat said:

    Tatoo

    image

    2013-09-09

    i did it, I think?

     

    Bad picture .. One on

    Bad picture .. One on expressions in better.  Yes I understand.  It has to be personal ands mine is on my foot so I can see it.

     

  • Marynb
    Marynb Member Posts: 1,118
    #11
    Lorikat said:

    Bad picture .. One on

    Bad picture .. One on expressions in better.  Yes I understand.  It has to be personal ands mine is on my foot so I can see it.

     

    Tattoo
    Lorikat, that is great! Good for you!

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