"no evidence of disease?"

[LA CUCA]

My boyfriend just had his post chemo/radiation colonoscopy this morning. The doctor said that while unusual he found no evidence of disease. When we went in december the same doctor said that his tumor was close to the sphincter and there was background. He continued to say that while he wasn't a surgeon he would probably lose his sphincter.

He was then diagnosed as having stage 3 rectal cancer and 2007 has been an emotional roller coaster. He got three opinions, in houston, new york and rochester. all the doctors said the same thing. he would need chemo radiation, surgery, a colostomy and more chemo.

We meet with the Surgeon on Wednesday and I am really hoping that this latest diagnosis means that my beau will be able to keep his sphincter and more importantly I hope this means that his chances of recocurance will be diminished.

So here is my question:

Has anyone hear about this "no evidence of disease" I can't wait until wednesday to know what this all means. Part of me is elated and the other part of me just doesn't want to get his hopes up to high, so I am trying to be reserved about all of this.

[naomi]

I'M NOT AS INFORMED AS OTHER PEOPLE HERE BUT IF YOU READ OTHER POSTS YOU'LL SEE MANY PEOPLE WRITE "NED" WHICH I HAVE LEARNED THAT THE WORD ""CURED" CAN NOT BE USED SINCE THIS TYPE OF CANCER CANNOT BE CURED BUT "NED" MEANS AS GOOD AS YOU GET!!!! fOR NOW NONE OF HIS TESTS ARE SHOWING ANY CANCER AT ALL!!!!! I GUESS IT'S LIKE REMISSION.

[sean]

One of the worst parts of having cancer no matter what kind and what stage is that when the primary (and maybe secondary) tumors are completely removed there is no way to tell if the cancer has spread until the miniscule tumors or even single cells grow large enough to detect. If you are stage 4 and there are detectable metastases you can't know if there are other tumors too small to detect elsewhere. Generally if you make it 5-7 years without any new tumors being detected some oncologists will consider you "cured". As an example, I have stage IIA colon cancer. The primary tumor was pretty advanced, but I had no involved lymph nodes and no vascular invasion. I've had a doctor tell me that I my resection "cured me" and don't worry since I will live a long life. I am sure he was trying to be reassuring, but I think it is dangerous advice since statistically about 1 in 4 Stage IIA patients actually have metastases that are just too small to see. At some time in the future approximately 1 in 4 stage IIA patients who takes a wait and see approach will have a "recurrence" which really means that the metastases that were always there have gotten big enough to detect. NED means cancer might be there and might not - all you know is that if it is there it is still too small to detect. It completely sucks that you can never know for sure. The longer you are NED, the better the odds that your are really completely cancer free. I don't think I'll feel "cured" until I'm NED for about 10 years or maybe more. Hopefully I'll be here in 10 years to let you know.

My opinion is that it is best to be fully informed about your particular cancer and be aggressive as is practical in monitoring and treatment. Don't let statistics scare you since any number that indicates the effect of actual treatment on the outcome is always at least 5 years behind modern medicine and your boyfriend is an individual not an average. In my opinion it is important to be aware of the statistics as a factor in making treatment decisions - especially in the case of adjuvant chemotherapy. All that said, it sounds like your boyfriends doctors are being very aggressive in treatment which is what I would want if I were in his shoes. NED is as good as it gets for now & its where everyone who has any stage of cc or any c wants to be. I hope your boyfriend stays NED for the rest of his natural life. My unsolicited advice to you is to understand that he may get freaked out or depressed from time to time - especially when waiting for test results. Unfortunately its one of the nasty benefits of being in the colon club. Good luck to both of you.

[cuca]

So we met with the surgeon today. And my beau's sphincter will be saved. His tumor was totally gone with the exception of a scar. This is terrific news and I hope it will give others hope that the treatments do work.

Earlier this year we had three consolts with some of the best doctors in the country. They all said that there was very little if no chance the tumor would shrink. We/he resigned ourselves to thinking about what kind of colostomy he should get and wondering what his survival rate would be. While he has a long road ahead of him I hope people know that there is hope.

I also urge anyone who is reading this board because you are worried you might have something wrong with you to go to the doctor and get your colonoscopy.

[pjpeace]

That is great to hear! I LOVE to hear stories like that and glad you let us know. I couldn't understand how i was in NED (CEA went from 8 origianlly to <.5) and still had the tumor left inside me...I was thinking 'ok so if there's no cancer floating around what's up with that tumor left in there?' It used to be cancer right? But on my second surgery the tumor was completely dead...NED rocks...

[sean]

With all the talk of googling colondar stuff I decided to google NED.

I guess its great to be NED as long as you don't live in Scotland:

http://en.wikipedia.org/wiki/Ned_(Scottish)

[sean]

The forum doesn't like the underscore in the link. Your need the underscore and the (Scottish).

Easier to just google "NED" and pick what is the 4th entry right now:

Ned (Scottish) - Wikipedia, the free encyclopedia
Ned is a derogatory term applied to certain young people in Scotland (similar to the terms chav used in England, skanger in Ireland, and spide in Northern ...

[Holly]

NED is an acrynym for no evidence of disease. Symantics at its finest. As a stage IV survivor, traditionally stage IV disease is not curable so this NED is used in exchange for remission or no evidence of metastatic disease. I have been NED for over 3 and a half years and grateful every minute of my life. Should you be fortunate enough to hear such beautiful words, dance, do back hand springs and/ or jump from clouds nine, ten and so on. It is a beautiful thing!

Wishing you continued good health and know that you are in my thoughts and prayers!

Always,

Holly

[johnmeissner]

Should you be fortunate enough to hear such beautiful words, dance, do back hand springs and/ or jump from clouds nine, ten and so on. It is a beautiful thing!
Holly

Oh, if I were only in good enough shape to do something like that!

Glad to see you here Holly. Catch up to you on the phone soon, I hope.

[missjv]

hi,
holly is right stage 4 is not ususally curable but it can be and it has happened. ned is just saying there is no visible cancer detected in scans or bloodwork. ned for any cancer patient is a plus and good to hear. cure would be better but i will take what i can get at the moment.


missjv

[NICK THE BRIT]

Sean, youve tickled me with your post about scottish (ned) we know them as chavs here in england, normally little toerags too.

[sue]

Hi Holly, I am also stage 1V. I had a recurrence after 2 years of C free after my initiatial diagnosis of CC stage 3. It had spread to my liver and lymph nodes this time. I had surgery and the liver spot came out with clear margins, but the nodes had C cells. So I did 28 radiation treatments and now am on Xeloda (pill form). I wondered if yours had gone into the lymph nodes like mine? And how are you now? I just found this group. Sue

[Lifes2short]

Cuca,
Please forgive me if this post sounds negative. I do not want to scare you, but I do want to make sure that your boyfriend gets the best possible treatment.

I also was diagnosed with Stage III rectal cancer. It was low in my rectum and they told me I'd lose my sphincter. I went through concurrent radiation and chemo - eight weeks of radiation. At the end of treatment my tumor was gone. They did the rectal resection anyway because they can never be sure that all the microscopic cancer is gone. During the resection they took out 26 lymph nodes. 17 of them were cancerous. At the time or resection, they biopsied the original rectal tumor and found no cancer left at all.

A month after surgery they did a CT and found cancer in my liver. So in spite of the fact that the radiation worked on the rectal tumor, I still had a lot of cancer in my body.

Has your boyfriend had an ultrasound to try do determine if there was/is lymph node involvement?

I would urge you to get a second or third opinion regarding whether or not he should still have a rectal resection. Better to be safe than sorry.

Remember that no two people are alike. Just because it happened this way with me doesn't mean that your boyfriend still has cancer. I just felt I should share my story because my original diagnosis and response to radiation were so similar. I sincerely hope that he is completely cured.

[Guest]

Lifes to short,
Yes he has had the ultrasound to determine if there is/was lymphnode involvement. He did this in December and again last week. We got good news each time.

My question to you is what do you mean he should second guess if he should have the rectal recision? He is going through with it next week and then will have chemo again afterward. I believe his doctors are being very aggressive and very cautious, but we are also concerned that this news is too good to be true.

[Lifes2short]

My apologies, Cuca. When you wrote that they were saying he was NED and they'd be able to save his sphincter, I assumed you meant that they would not do resection. Now I understand that you meant only that they wouldn't have to remove his sphincter - that sounds much better. And it is great that they will save his sphincter. If I could do this over again, I would have been more aggressive about keeping mine.

Sorry about the misunderstanding.