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why ? afraid of saying it or true ?

alta29's picture
alta29
Posts: 435
Joined: Mar 2005

I'm confused or is it that I dont like to hear the word NOT curable ???
2 1/2 years ago, when I was dx, I remembered reading that cancer was going to be treated as chronic disease in the next 2 years...And that is what we have been hearing...but also we keep on hearing NOT curable( for stage IV )Mrs. Edwards said it and last night reading an article about Tony Snow in the people magazine, they stated the same thing....The good thing ? they mentioned that according to Dr. Kenneny of Memorial Sloan Cancer Center 40% of colon cancer patients that have their cancer spreads to the liver will/can survive for more than 10 years now...even though we dont like to read stats, its good to see the changes....but my question is, why can't they say that some people DO get cured ????

shmurciakova's picture
shmurciakova
Posts: 910
Joined: Dec 2002

I am really not sure why they say that. I mean, technically if you go for five years in remission from colon cancer, you are "cured". I know colon cancer is unlike breast cancer in that regard. Where sometimes breast cancer will return many years later.....colon cancer is almost surely not going to return, the more that time goes by. After, 2 years you're doing well, 3 years even better, 5 years awesome! And that does happen, even for Stage IV people, especially if you are able to have a resection.
Anyway, there are a couple of us on here who have been over 2 years NED at Stage IV. and I for one feel that I have already beaten the odds. I am still alive, and it has been 5 years.
Best wishes,
Susan

Betsydoglover's picture
Betsydoglover
Posts: 1254
Joined: Jul 2005

Well said, Susan.

And my oncologist tells me that while liver resection is the textbook Stage IV cure, that text needs to be rewritten.

I've been NED from Stage IV disease for 19 months just from chemo (and no chemo for 14 months). The scary thing for me is that I didn't have a resection or RFA. Why - because after chemo they could find nothing to resect or ablate - and they looked really, really hard! (Unfortunately I know that the scan techniques available can miss things, but given I really believe I am getting the best scans available I don't let that bother me for the most part.) So I have a hard time thinking in terms of being "cured" - but at the same time reading articles about Tony Snow really tick me off, because they sound like the experiences of so many of us on this board are vitual impossibilities. And, they aren't.

I'd love to hear the "cure word" too, but I'll settle for chronic disease (if it comes to that).
Docs may not want to use the "cure" word (it takes a lot for medicine to say disease is gone and as if it never happened and more time needs to go by with the newer treatments before they will start saying this, especially for metastatic disease.)

Take care (and thinking more and more about being "Cured")
Betsy

2bhealed's picture
2bhealed
Posts: 2085
Joined: Dec 2001

My local gastro surgeon (just the one who does my scopes when I stary local and not go to Mayo--he didn't do any of my surgeries) (and I don't really like him much)(not like my Mayo onc whom I love and my wonderful surgeon who is a hoot!)ANYWAY......this local guy used the "C" word with me at my 5 year scope-- CURED!!!!! He did not say remission or no evidence of disease he said CURED!! I grabbed it and ran!

I haven't seen the Tony Snow articles. Is it in the latest People mag? I try to buy them when they have colon cancer stuff in them like with Farrah Fawcett. Just for curiosity sake.

Anyway, I don't know why they won't say cured unless it's a legal protection thing.....who knows?

It sounds great that it has been prolonged to 10 years since who knows what improvements can/will be made in that time. I for one do not plan on giving up getting the word out that there are alternative healing modalities that can greatly improve one's health and cancer prevention (which IMO is key).

peace, emily who is a carrot consuming mama bunny :-)

scouty's picture
scouty
Posts: 1976
Joined: Apr 2004

My oncologist and I had a long talk about this my last appt. He said the entire profession is very leary of anyone being in a non-surgical remission and even more so of a non-surgical "cure". The ole cut it out cure is the one they embrace the most.

He went on to say I was one of his few non surgical NED patients that has made it this far (2 1/2 years since stopping chemo without a recurrance) that he has ever had (in 30 years). And because of that, he will watch me much closer then others, which is fine with me.

After asking a few questions, he admitted that they all go off of stats and data and some of it needs to be updated but it will take a few years.

I just don't think they are comfortable with saying chemo/radiation alone really can kill tumors yet, surgery has always been the routine.

I also agree that they rarely use the cure word with Stage III and IV patients especially in the beginning. They use treatable and manageable instead but that can change over the years.

I try to work to prove their stats and their terminology all WRONG.

BUT, I also hate to hear the NOT a Cure words.....such a shame.

Great news for you and keep up the great work.

Lisa P.

hoagiemom's picture
hoagiemom
Posts: 87
Joined: Feb 2007

I'm confused also. My surgeon told me that I was uncurable. Stage III two nodes. It scared me to death to hear that but after being on this message board I realized that people are being cured. That is why I chose to go to Roswell Park instead of staying in my hometown for all my treatments. They believe in people and in hope. I think it will be curable someday just look at how far it has come in the last 10 years. We need to believe in ourselves.

Michelle

2bhealed's picture
2bhealed
Posts: 2085
Joined: Dec 2001

WHOA! Really? Dang! They used the incurable word with you? I am Stage III with 2 pos lymph nodes (of course they and the tumor are long gone) but it was never ever presented to me as being incurable! That stinks they told you that.

We absolutely have to believe!

peace, emily

KathiM's picture
KathiM
Posts: 8077
Joined: Aug 2005

Hey, emily.....I was stage III, 1 lymph node....I was told I had 6 months to LIVE, and only a 37% survival rate after that....that was 2 years AND 6 months ago.....

HOPE is a wonderful thing...

Hugs, kathi

2bhealed's picture
2bhealed
Posts: 2085
Joined: Dec 2001

hi kath!

You know....I was thinking about this and though my onc never used the word incurable he did give me a percentage stat--what I remember was that I had a 30 % chance of living 5 years without the chemo and if I took the chemo it went up to 60%. But I think somehow by leaving out the word incurable I didn't go there (?).

Sheesh! You were told 6 months????

Sometimes ignorance is bliss.

peace, emily

JADot's picture
JADot
Posts: 720
Joined: Jan 2006

The thing that really bothers me about the Tony Snow story is what the imaging and the blood tests have missed. I am sure Tony Snow was on the same surveillance program as all of us are on - 3 months blood test, annual scan. Well, when he went in, they said he had a "non-cancerous mass in his abdomen". After the surgery they said "liver metastasis". It sounded like his mass didn't light up on a PET scan. This makes me question the accuracy of the current imaging technology. Combine that with my own recent experience with scan, I am feeling a little shaky. I am so scared that I am making an appointment to see my oncologist to discuss more or different surveillence program.

Ying

Betsydoglover's picture
Betsydoglover
Posts: 1254
Joined: Jul 2005

Hi Ying -

I think this scares us all.

Being Stage IV I am "under surveillance" with PET, CT and blood work every 3 months. I like to think that means any recurrence would be caught quickly, but then something like this happens and you have to wonder............. One report (can you believe media reports?) said that the mass was discovered months ago "in the same location as the original tumor" and they had been "watching it". One has to wonder what exactly "watching it" meant and also, if he had his entire colon removed, then how could the new mass be in the same place?! (OK, I am splitting hairs, because this is freaking me out a little bit.)

Let us know what your oncologist says - I'll be seeing mine anyway on 4/16 so we'll probably have a chat about this.

Betsy

P.S. There was a hideous article in the Washington Post this morning - the gist being that advanced cancers are not curable, that treatments don't really impact the outcome (you know, the one we all fear) and that not enough oncologists explain this to their patients! I really needed this! IT was the kind of article that contained true "facts", including all those dreaded statistics we know and hate, but the slant was so wrong. The only thing that made me madder than the article, was the stupid fact that I read it!

KathiM's picture
KathiM
Posts: 8077
Joined: Aug 2005

Ying,
could be the tumor wasn't metabolizing at the time of the PET scan...it DOES seem sort of wierd, tho....I wonder how much of the REAL story we DON'T know.....
For example...on MY breast cancer....I had been sent 2 years earlier to a surgeon for a biopsy. He convinced me that, with only a 3% chance of cancer, it seemed a little overreacting to do a surgical biopsy. I believed him....didn't have anything further...PET scan for the colon ca found the breast ca....sigh...
And now a word from the advocate.....

It is good that the press is following Tony's plight, because he was a healthy, 49 year old man when first diagnosed. This will hopefully (please don't think me TOO ghoulish) change some minds in Congress about funding much-needed colorectal cancer screening.....

Hugs, kathi

jams67's picture
jams67
Posts: 927
Joined: May 2006

I saw my onc today, and she thinks the Avastin is making a difference in the outcome of recurrence. I would like to see insurance companies paying for testing earlier than age 50. The research is making progress, I just want it to be NOW.
Jo Ann

vinny3's picture
vinny3
Posts: 933
Joined: Jun 2006

I think that one of the reasons the word "cure" isn't used is that they have no definite way to tell. Some who have no evidence of disease will show up later with a recurrance and others will not. There is not a definite way to tell the difference. The other concern is that if you tell someone they are cured then they may decide they no longer have to think about it and may drop off the followups that should be done. While it is felt that most recurrances occur in the first two years it appears to be delayed for those who had radiation prior to surgery.
While I would love to think of myself of being cured I will be content to consider myself NED (hopefully-waiting for final report from the CT last week) and savor every day that comes my way.

Dick

levensweg
Posts: 55
Joined: Jul 2006

I find mass media too vague and generally innacurate when it comes to any statistic. I believe they use the statistic that sounds most intresting or sounds more profound.Using stats that are five or ten years old is acceptable with cancer, but look what has come up in the last 10 years for colon cancer.... that's the real story. Journalism knows how to capitalize on doom and gloom, or on the opposite side, insane miracles.

I recognize the important of big media news and definately keep an eye on it. But journalists aren't professionals at cancer research, or weapons of mass destruction or a lot of other things for that matter.I respect journalism, but most importantly, the story must sell.

The most updated and meticulous news I've found on cancer, i feel is right here. Of course we are all invested in it.

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