NED or in remission?

People don't understand NED. I think thats a term that we, as Cancer patients, use.

I tell people I am in remission or just that I have Cancer but I am doing well. I never tell them the Cancer is gone. I can't get my mouth around it. It is almost like I am tempting providence if I say that.

I figure at Stage IV I have Cancer, and thats what I tell people. 

Sue - Trubrit

Trubrit said:

Ned is for horses

People don't understand NED. I think thats a term that we, as Cancer patients, use.

I tell people I am in remission or just that I have Cancer but I am doing well. I never tell them the Cancer is gone. I can't get my mouth around it. It is almost like I am tempting providence if I say that.

I figure at Stage IV I have Cancer, and thats what I tell people. 

Sue - Trubrit

Sue said.  NED is a cancer patient and cargivers term for the most part.  My wife tells people she is a cancer survivor and has moved on and done with it. 

I have yet to cross that bridge but to me it's all semantics.
If/when people ask "how am I doing?" I just say 'feeling fine' if that's how I'm feeling. 

JanJan63 said:

Cazz, I hope we all get to

Cazz, I hope we all get to see it at some point. I wish it for everyone. The last colonoscopy I had showed no cancer as did the last ct scan but I have another scan coming up in August and it will tell me if it has come back or progressed. I thought I had one on Friday and went to the hospital and found out it's next month, sheesh, I felt stupid. So days of stress because when I have a test coming up it becomes real again. And I worry because I didn't have symptoms the first time so it could be back without me suspecting. I hate the way this is sometihng we will always have to live with, even once we're NED for five years. Will it come back and, if it does, will it be even worse.

I feel fortunate because I see people on here with mets and other issues and I haven't had to deal with that. On the other hand I was hospitalized twice shortly after my cancer surgery for abcesses at the site of the resection and had a terrible time when my incision got an infection underneath the surface that ate away under there so I had to have it packed until it finally healed which was excrutiating. Then in December I had a blood clot that went to my lung that almost killed me. They say it's from the surgery six months before but I think it was from the chemo I was going through at the time. The blood clot and subsequent five cardiac arrests, kidney failure, brain bleed and swelling, and stroke left me paralyzed and I've only been home from the hospital since the end of March and have been walking since then. First with assistance and now on my own. I'm even riding my horse again although not for long and I have to have my daughter put my saddle on because I'm still too weak to lift it. Not bad for someone whose family was told I shouldn't be revived because I'd probably never be the same mentally and could even be without any brain function at all. At minimum I wasn't expected to know my husband and daughter and was expected to never walk again.

So that kind of put the cancer in the shadow of what I've been battling, which is to be normal again and live whatever life I have to the best of my ability. There are things I still can't do such as carrying anything up or downstairs if it takes both hands as I need to steady myself but I'm expecting that at some point in the next few months I'll be able to do that, too.

I guess my point is that we all have our own battles and I don't know how much is strength, how much is how we live such as eating properly and exercising, or how much is just sheer luck. My survival of the blood clot is a blessing to me. Two of the ICU doctors told me I'd received a miracle and one said there was no medical explanation for my survival. My odds were given as one in a thousand for ever coming fully back from it but I did. Why did I get that lucky? I don't know. I'm just glad I did.

Jan 

 

Wow, Jan, I am so sorry that you had to go through all that, and so amazed that you not only survived, but seem to be making a great come back and it does make me wonder now about my Health Care Directive that says "do not resuscitate, if likely to be a vegetable and/or not survive another three months"!  Good job you didn't have that or you would not have had the opportunity to show those doctors just how wrong they can be!  Congratulations on your phenomenal survival and obviously amazing strength of will.

Your reply really opened my eyes and made me feel ashamed of myself for being such a whiner.  I tend to think that us Stage IV's are so much worse off than everyone else, but even the most "curable" people have to go through the surgery and/or chemo and radiation as well - often with horrific consequences, though usually not quite as bad as yours and most, if not all, have to live with that Sword of Damocles of possible recurrence hanging over our heads.  In a nutshell, it totally sucks for all of us!

I am in awe of some of the people and stories I read on these forums and wonder if I will have the strength (or the chance) to endure round after round of chemo and experimental treatments that may work a little bit or not at all, always of course hoping that I will be in the 1-5% who will have spectacular results and go into long term remission.

I am so glad that you have beaten back the cancer, although at such a cost, and pray that your August scan also comes back clean so that you can concentrate on getting back to full strength and hefting those saddles up onto your horse on your own again.

Carol

JanJan63 said:

Cazz, I hope we all get to

Cazz, I hope we all get to see it at some point. I wish it for everyone. The last colonoscopy I had showed no cancer as did the last ct scan but I have another scan coming up in August and it will tell me if it has come back or progressed. I thought I had one on Friday and went to the hospital and found out it's next month, sheesh, I felt stupid. So days of stress because when I have a test coming up it becomes real again. And I worry because I didn't have symptoms the first time so it could be back without me suspecting. I hate the way this is sometihng we will always have to live with, even once we're NED for five years. Will it come back and, if it does, will it be even worse.

I feel fortunate because I see people on here with mets and other issues and I haven't had to deal with that. On the other hand I was hospitalized twice shortly after my cancer surgery for abcesses at the site of the resection and had a terrible time when my incision got an infection underneath the surface that ate away under there so I had to have it packed until it finally healed which was excrutiating. Then in December I had a blood clot that went to my lung that almost killed me. They say it's from the surgery six months before but I think it was from the chemo I was going through at the time. The blood clot and subsequent five cardiac arrests, kidney failure, brain bleed and swelling, and stroke left me paralyzed and I've only been home from the hospital since the end of March and have been walking since then. First with assistance and now on my own. I'm even riding my horse again although not for long and I have to have my daughter put my saddle on because I'm still too weak to lift it. Not bad for someone whose family was told I shouldn't be revived because I'd probably never be the same mentally and could even be without any brain function at all. At minimum I wasn't expected to know my husband and daughter and was expected to never walk again.

So that kind of put the cancer in the shadow of what I've been battling, which is to be normal again and live whatever life I have to the best of my ability. There are things I still can't do such as carrying anything up or downstairs if it takes both hands as I need to steady myself but I'm expecting that at some point in the next few months I'll be able to do that, too.

I guess my point is that we all have our own battles and I don't know how much is strength, how much is how we live such as eating properly and exercising, or how much is just sheer luck. My survival of the blood clot is a blessing to me. Two of the ICU doctors told me I'd received a miracle and one said there was no medical explanation for my survival. My odds were given as one in a thousand for ever coming fully back from it but I did. Why did I get that lucky? I don't know. I'm just glad I did.

Jan 

 

Or so the saying goes. That's an amazing story of surviving and beating whatever "odds" the doctors assigned to your condition and chances for recovery. I think people, doctors included, underestimate how hard the human body can fight to stay alive (cancer, notwithstanding).  In the immortal words of Hans Solo, "Don't tell me the odds" because in so many cases they don't matter. I think it comes down to a mix of "strength, eating properly and exercising, and sheer luck", and no one can say which one of those is more important than another.

What I take away from your story is not just that you went through so many bad things (which I truly wish you hadn't) but that you survived all of them and are still moving forward.

Congratulations and I wish you continued recovery and health.

• Regarding NED - I take the term literally to mean "No Evidence" of disease or that tests don't show any cancer activity.
• Remission to me means that there may or may not be evidence of cancer but it is not active.

It's semantics.  I want to live long enough to see the term  "cancer" become an unused and obsolete word only used in the footnotes in medical history textbooks. (Since I'm 60 that would mean in the next 30 or 40 years, but sooner rather than later!).

As for me, whenever someone asks how I'm doing I just say I'm in the peak of health for my age, hair color, height, condition, and weight. They usually stop listening after "hair color".

Bill

Cazz said:

Yikes!

Wow, Jan, I am so sorry that you had to go through all that, and so amazed that you not only survived, but seem to be making a great come back and it does make me wonder now about my Health Care Directive that says "do not resuscitate, if likely to be a vegetable and/or not survive another three months"!  Good job you didn't have that or you would not have had the opportunity to show those doctors just how wrong they can be!  Congratulations on your phenomenal survival and obviously amazing strength of will.

Your reply really opened my eyes and made me feel ashamed of myself for being such a whiner.  I tend to think that us Stage IV's are so much worse off than everyone else, but even the most "curable" people have to go through the surgery and/or chemo and radiation as well - often with horrific consequences, though usually not quite as bad as yours and most, if not all, have to live with that Sword of Damocles of possible recurrence hanging over our heads.  In a nutshell, it totally sucks for all of us!

I am in awe of some of the people and stories I read on these forums and wonder if I will have the strength (or the chance) to endure round after round of chemo and experimental treatments that may work a little bit or not at all, always of course hoping that I will be in the 1-5% who will have spectacular results and go into long term remission.

I am so glad that you have beaten back the cancer, although at such a cost, and pray that your August scan also comes back clean so that you can concentrate on getting back to full strength and hefting those saddles up onto your horse on your own again.

Carol

If I couldn't vent once in awhile I'd probably explode. I don't think the word "whine" applies in these discussion boards since it implies that what is being discussed is trivial. Nothing, in my opinion, that people with cancer and those who are taking care of them is trivial (sometimes intentionally humorous but never trivial).  So I choose to use the word "vent" (even if I occasstionally vent with a high, shrill, whiney tone of voice).

I was in healthcare many, many, many, years ago and while I worked on various units I spent most of that "career" working on med/surg units. Patients with the same diagnosis and conditions could have major differences in how they tolerated procedures, how much pain medication they needed, how quickly they recovered, and how they responded to treatment.  Point is, everyone is different and have different thresholds and tolerances. That didn't make one patient better or stronger than another it just made them different.

Whatever a patient felt was real to them and had to be dealt with.  Comparisons between one patient and another was never considered when treating an individual patient

One of the reasons comparisons can't be made between one patient and another is because the brain tends to take whatever is going on and turn it into a "big deal". For example, stress over not having a job was a "big deal" for me a couple years ago but is now in the background while cancer has taken center stage.  But, if I were to get up in the middle of the night and stub my toe that would become a "big deal" for as long as the pain was there and I'd probably be "venting" pretty loudly while it hurt.

Talking about situations, family, feelings, etc. is a way to cope. Having people that will listen, and especially those who can relate to your situation, can be a powerful stress reliever and that can help the healing process.

In my opinion, venting is healthy and necessary and just as important as exercise, eating right, healthy optimism, and all of the other things that help to keep you balanced.

Bill

marbleotis said:

It is all in a name

I honestly do not think anyone would understand these terms unless they or a family member had cancer.

I prefer to think of myself as a cancer survivor that is currently 3 years and 6 months NED.

Refer to yourself in the way that works for you.

indeed, I'm living with it. Yes I have been. NED for 4 years, I'm still stage III, nothing can change that. cEA stays around 1.2. No more colonoscopies or  CT scans, it scares me, because as Ron says, stay vigilant. It just means it might return in another form. I'm still dealing with bathroom issues. Going out for dinner , I like to stay close to a bathroom for at least 2 hours after. Traveling has the same problems.  BUT I'm NED, I still live with it everyday.

so my motto is, enjoy every day and live one day at a time. Love and hugs to all of you my Collon friends

JanJan63 said:

Cazz, I hope we all get to

Cazz, I hope we all get to see it at some point. I wish it for everyone. The last colonoscopy I had showed no cancer as did the last ct scan but I have another scan coming up in August and it will tell me if it has come back or progressed. I thought I had one on Friday and went to the hospital and found out it's next month, sheesh, I felt stupid. So days of stress because when I have a test coming up it becomes real again. And I worry because I didn't have symptoms the first time so it could be back without me suspecting. I hate the way this is sometihng we will always have to live with, even once we're NED for five years. Will it come back and, if it does, will it be even worse.

I feel fortunate because I see people on here with mets and other issues and I haven't had to deal with that. On the other hand I was hospitalized twice shortly after my cancer surgery for abcesses at the site of the resection and had a terrible time when my incision got an infection underneath the surface that ate away under there so I had to have it packed until it finally healed which was excrutiating. Then in December I had a blood clot that went to my lung that almost killed me. They say it's from the surgery six months before but I think it was from the chemo I was going through at the time. The blood clot and subsequent five cardiac arrests, kidney failure, brain bleed and swelling, and stroke left me paralyzed and I've only been home from the hospital since the end of March and have been walking since then. First with assistance and now on my own. I'm even riding my horse again although not for long and I have to have my daughter put my saddle on because I'm still too weak to lift it. Not bad for someone whose family was told I shouldn't be revived because I'd probably never be the same mentally and could even be without any brain function at all. At minimum I wasn't expected to know my husband and daughter and was expected to never walk again.

So that kind of put the cancer in the shadow of what I've been battling, which is to be normal again and live whatever life I have to the best of my ability. There are things I still can't do such as carrying anything up or downstairs if it takes both hands as I need to steady myself but I'm expecting that at some point in the next few months I'll be able to do that, too.

I guess my point is that we all have our own battles and I don't know how much is strength, how much is how we live such as eating properly and exercising, or how much is just sheer luck. My survival of the blood clot is a blessing to me. Two of the ICU doctors told me I'd received a miracle and one said there was no medical explanation for my survival. My odds were given as one in a thousand for ever coming fully back from it but I did. Why did I get that lucky? I don't know. I'm just glad I did.

Jan 

 

JanJan63

That is simply amazing ... thank you for sharing this story .. you certainly have put my mind in a different perspective today. 

There is simply nothing better than to hear people, such as yourself, overcome such incredible circumstances and move forward to a place of enjoying life.

Kuddos!! I hope you continue to ride for many years to come!