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NED,Remission,Stable,Cured?

grammadebbie's picture
grammadebbie
Posts: 429
Joined: Jun 2009

Hi Dear Ones,

I have a question and would like your thoughts on it. I was at my cancer support group (it's for metastastic cancer) and asked everyone what your supposed to say when people ask you if they got all the cancer,if your cured,why your not back to work,when will you be cancer free etc. They all said that cancer is a chronic desease and it's like diabetes or high blood pressure. It can be stable but it never goes away. So do I say I have cancer but NED or stable, is it at 5 years that you say you're cured. I want to be positive and think that I don't have cancer anymore. I know it's just all the way we perceive things but I'm really confused about this. I thought that after surgery and chemo that the cancer was gone but they say no, it's just not presenting itself. I am/was Stage IIIc. Am I still IIIc? Sorry, I know this seems petty but I don't know how to respond to people. Thanks for your thoughts.

Blessings to all,

Debbie (gramma)

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

You know you could just tell them that you are doing OK and things are fine at the moment.

I talked with my onc about this the other day - he says it just semantics anyway.

Remission is an old term now I guess...so the new terms are NED, no evidence of disease...and NEAD, no evidence of active disease.

I hope to get a clearer understanding of this myself.

You know when you get cancer, none of us, and all medical people cannot really declare us cancer free - all it takes is one cell to start things and you don't see a mass until you get about 1-billion cancer cells together - I believe each centimer (cm) is a billion cells is what I've read, so really that's hard to say.

I think either NED or NEAD, it may be just for now or it could be for a spell, or it could be forever.

I think the first marker is 5-years out with NO recurrence...when you get 10 years out with no recurrence, I believe they consider you cured per say and if I make it that long, I will be happy enough with that.

If it comes back, well, then we all know what to do about it.

So you could say NED, NEAD, or thank you for asking, I'm doing just fine :)

Thanks for your post on my hopsital post the other day - that was sweet of you to talk to me :)

-Craig

grammadebbie's picture
grammadebbie
Posts: 429
Joined: Jun 2009

Thanks for your response. I guess I need to know for myself too. I guess I'm just not understanding it. I'll write later. I was just on my way out when I cked messages.

Blessings to all.

Debbie (gramma)

dianetavegia's picture
dianetavegia
Posts: 1953
Joined: Mar 2009

Stage I, II, III and IV ARE curable. Just ask those Stage IV's who have been free of any cancer for a dozen or more years! :o)

Since all my cancer was removed during surgery, I tell people just that. If they ask why I had chemo, I tell them it was to catch and destroy any bad cells that might have gotten loose. I believe people ask because they're concerned but also because they want to understand what you're going through or might face.

None of us know. Hubby and I just got in from a wake for a 46 year old dad from our church who was found dead yesterday morning by one of his sons. He had not been ill.

I believe God has fully healed me. :o) I tell anyone who will listen what God has done!

taraHK
Posts: 1961
Joined: Aug 2003

You raise a really interesting topic. I guess there are 2 separate issues. One is what we chose to say to others. The other is how we think of things ourselves. For me, I feel pretty strongly that I get a choice in both! For other people, I tell them whatever I feel like telling them at the time (!) -- but this is usually something between "Fine" and "I'm (currently) cancer-free". For myself, at the times when I am NED, I don't like to think of it as "in remission", because that seems to imply that it is coming back. And I live in hope! So, I like to think of myself (at those times) as "cancer free". If the tests can't detect it, it ain't there.

Regardless, i believe we all have the right to use whatever terms we like, to ourselves and to others.

Tara

butterfly23's picture
butterfly23
Posts: 257
Joined: Mar 2008

Hi, Last october my dr. said all my tests were clear, I actually don't remember his exact words. So, I asked him if I was in remission? His response was there is no evidence of disease NED. I guess this the way they explain it. Unfortunately I was only NED for 2 months! But I did do my HAPPY dance for 2 months. It now has spread to my lungs and spine. But I am looking forward to be dancing with NED in the future!!!

Bless you all!
Karyn

grammadebbie's picture
grammadebbie
Posts: 429
Joined: Jun 2009

Dear Karyn,

Thank you for responding to my post. I'm so sorry to hear of your recurrence. I will be praying for you and that your "dancing with NED" real soon. How is your treatment going? You stay strong and be comforted with the knowledge that you are being covered in prayer.

Blessings to you,

Debbie (gramma)

ron50's picture
ron50
Posts: 1721
Joined: Nov 2001

Hi Debbie,
I was stage 3c 6 of 13 nodes involved. At the end of five years my surgeon suggested that I was cured of that tumour. In his experience if they haven't metastacised in five years ,they are finnished. I asked if that was official. He said that seven years was what he considered official. He warned me to be vigilant for new cancers forming from polyps. I have done that having many more scopes than one can reasonably enjoy. I am now nearly twelve years cancer free and considered very cured. What do my friends say? " It can't have been as bad as you said it was". Sssiiiiggghhh. Best wishes,Ron.

grammadebbie's picture
grammadebbie
Posts: 429
Joined: Jun 2009

Dear Ron,

Thank you soooo much for sharing your journey with me. I can't believe that some people can be so sssllllgghh insensitive. Usually they are the same people that complain about hang nails.

So wonderful you are very very cured. Very encouraging.

Blessings,

Debbie, (gramma)

PhillieG's picture
PhillieG
Posts: 4890
Joined: May 2005

Like Craig said and I've said before, to me it's semantics. When people ask me how I am I usually say that "the cancer is stable and feeling pretty good". Too many people want to classify things IMO. It is also a confusing situation and gicing it a label is a set up for things to change. So, however you feel comfortable describing it is the best way I guess.
You could always reply "How about those Yankees!" or "Those Yankees Stink"
-phil, or philip, or phillieg, or dad, or son.... just names for me!

grammadebbie's picture
grammadebbie
Posts: 429
Joined: Jun 2009

Hi Dear Ones,

Thank you for all your responses. I guess I'm frustrated. People think that it's like having your tonsils or appendix removed. Surgery, chemo your done and should be all better. I wish that was the case. I guess that when I'm down and feel like the ball could drop at any time I want people to understand that it's not that simple.What is that pain in my side,why am I having "bathroom" problems, why aren't I like I used to be (mentally and physically)? I am normally a very postivie person with great faith. I am also human and fear and all other sorts of emotions grab me. Sorry, I don't mean to be a downer - just wrestling with my emotions lately. I feel like I'm in a pity party - not a normal place for me. I have so much to be thankful for and am so blessed in so many areas of my life. I really do thank God for all good things and pray for wisdom on how to deal with the bad. Just going thru a rough patch right now. This too will pass. Thank you for understanding.

Blessing to all,

Debbie (gramma)

PS. I guess I really didn't need to know what to say to people I needed to know what to say to make people understand. xoxox

PhillieG's picture
PhillieG
Posts: 4890
Joined: May 2005

I believe cancer changed me forever. I think that if it was caught earlier there would have been a better chance I'd be more normal but at stage IV there's a lot to do to get to NED or even stable which is where I am now. I will never be the person I was pre-cancer and in many ways I don't miss that guy but at times I do miss him. I have not been able to get back in to mountain bike toughness and my body will never be the same. I have aches and pains more than I used to and still some residual pain from a 5+ year old surgery. I look at this type of stuff as being my "new normals". I've also gained more insight into things, I have deeper relationships with people, I'll speak my mind, I appreciate the beauty in everything, the list of positive things goes on.

I would imagine that if you are a person with a deep faith that it would raise many questions that are not easily answered if they can be answered at all. I do believe that in some ways we are the luckiest people on earth. We got a wake up call, a second chance if you will, to make thing right, to tell people how much we love them and mean to us. EVERYONE passes on at some point, we've dipped our toes into that water and are still here. Think of how many people leave for work and never come home. They didn't have the chance to make right or do what they needed to do or say.

You are right, you ARE blessed Debbie.
-phil

grammadebbie's picture
grammadebbie
Posts: 429
Joined: Jun 2009

Hi Phil,

Thanks for taking the time to respond to my "emotions". I agree with what you said, I also know in my head all the things you said. Guess I'm just in a little "pity party". Maybe someone else out there has gone thru these feelings and will know that it's just part of the process. I'm glad to be here to feel these crazy feelings. Ha I always look forward to seeing your heartfelt responses. You have been an inspiration to me.

Blessings to you,

Debbie (gramma)

lesvanb's picture
lesvanb
Posts: 911
Joined: May 2008

This paragraph you've just written has put words to what's been going on with me lately, a year and a half from diagnosis. I was even thinking of posting to the board that I was taking a break and don't worry about me if I'm not posting. I too have a long list of things I am very grateful for (Phil expresses those well-thanks Phil). I have a strong spiritual practice. I have a great support network. I think as an eternal optimist coupled with a healthy dose of skepticism. Reading your post points out to me that I would also like to be done with cancer, much in the way that others think I am done, which is so frustrating because I'm not done. Not at stage 4, even being NED. That ball could drop at any time, and I feel so deeply for and so connected to all those here for whom the ball has dropped, and who carry on with strength and grace. These questions come up for me "How did I ever get through that year of life-saving and life-altering treatment?" "Would I ever be able to do it again if need be, god forbid etc etc?" A friend has said to me that I would probably have a lot in common with soldiers returning home from the war; that they might have those same questions. We breath, we live, life changing events happen, we carry on. As Craig has said, we have the choice of how to respond, how to live.

Yes this too will pass, though I don't think that it's as important, or even possible for others to understand, as much as it's important for me to understand that I'm OK just as I am as I struggle with life's process. (I think the folks from this board come the closest to understanding the process.)

all the best, Leslie

grammadebbie's picture
grammadebbie
Posts: 429
Joined: Jun 2009

Dear Leslie,

Thank you so much for your beautiful response. I'm not happy that you are having some of the same feelings but I have to admit that it makes me feel a little better. Not that I would rejoice in your sufferings but that you understand. Yes, you are right about the people on this board being so understanding and supportive. It is definately a safe haven.This is just a journey that we all need to learn how to travel. Thanks again for your encouragement.

Blessings to you,

Debbie (gramma)

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