Cancer Info for Newbies

Betsydoglover

StacyGleaso said:

FYI....

the CSN guy, or Jose, as we know him, is a vital link to this web site. It is the hard work of him, Dana, and Greta (the founder of this site) who make our discussion pages, chats, and web pages possitle. They work diligently to make sure that information passed through the use of this site is accurate. They work diligently to make sure that folks aren't using this site or its discussion boards as a bible in which to dictate their course of action without any consideration for their personal need or that of medical influence.

I do not believe that Monica meant any harm. But you have to consider that when people read things, they automatically tend to jump on bandwagons and sometimes that isn't good. In a nutshell, the chemo vs no chemo is one debate I would never jump back into. Burn me once, shame on you....burn me twice, shame on me! lol But I think sometimes people read things in search of an "easier" way to treat cancer. Not saying that emily's food lifestyle is easy....my hat goes off to her as I doubt I could ever be that disciplined! lol But if merely eating more veggies cured cancer, don't you think everyone would be cancerfree? There comes a time when medicine may and should come into play. And would it be the surgery causing more cancer or the fact that some cancer spreads, no matter how hard you try to strangle it? Because by NOT removing the tumor surgically, there is a real reason to think it could spread because it's left there to travel.

Anyway....don't misinterpret....I'm not bitter, just feeling the need to defend my pal, Jose.

Hugs,
Stacy

Ying -

I'd also like to add that when folks are labeled Stage III, it is because some local lymph nodes were found to be positive for cancer. They don't remove and examine every single local lymph node during colon surgery. So, if some are found to be positive, it is safe to assume that more positive ones remain. Thus the need for some kind of follow-on treatment. It might be nutritionally based, it might be chemo. But, with Stage 3 you can't be at all sure that "all the cancer" was removed. Even with Stage II, there are now more clinical trials aimed at adjuvant treatment. Because of course, maybe there is that one lymph node you didn't exam that has cancer cells in it. Not trying to scare anyone, just trying to help answer Liz's question.

Take care all,
Betsy

LOUSWIFT

66Rose said:

Since I am new I am unaware who CSN Guy is, a moderator?!

First off I LOVED the post Monica, says it all.

And I beg to differ with CSN Guy on point #9.

I know first hand this is true, or should I say that 3 of my doctors told me this could happen during surgery, or were they plagued by the myth?

One can read into this from several angles. They first went to get my tumor in May of 2006, and did not remove it, but gave me a lovely ileostomy. The reason they did not touch it was concurred by all 4 of the surgeons in the room at the time. If they touched the tumor, it was so big and not "stable" and trying to remove it would make it worse i.e. spread, break apart etc. Sounded logical to me, but who am I am? They were the experts. So to me it means doing surgery on it would make it worse.

So we waited, tried one Chemo for 2 months, did not work to shrink it, and then went to radiation and 5FU and Whala it shrank! Then back into surgery on October 2nd, they took out that nasty ole tumor, margins were clear, tumor came out very nicely, they were pleased.

So here comes the intriguing part that makes some want to think hmmmmmm. So here this CSN guy who seems to be connected with the ACS he says that it is a myth that cancer spreads during surgery, ok lets say he is right, then about 75% of the Chemo given to people after surgery should not be? Not including Stage IV people. Remember I am not advocating this but simply trying to understand what he said.

Because according to my oncologist my surgery was a success, they got the tumor, margins were clear, nodes clear BUT because of this so called myth that most doctors believe, during surgery a piece could have been left behind, to small to see and it is floating around my body, Chemo needs to be done to find this rogue cell/cells and kill it so it will not grow again. I met with my oncologist on Wednesday and said this very thing to him so I completely understood why he wanted to do Chemo, and he concurred again for the fourth time I asked, he wants to chase a cell that could have or not have been knocked lose during surgery. And as I have said here before I am liking my odds of not going after that cell or cells, again I am STAGE II OR III, that silly node involvement can't be verified.

So does anyone else see this dilemma that CSN Guy has produced, or have our Western Doctors fallen into the myth too? Well at least my Western Doctors? Because my doctors told me cancer can spread because of surgery.

Just as we discussed earlier about someone reading our posts and saying I can survive stage IV with no Chemo. We are not medical board, just a sharing board.

I would love to be set straight, in a nice way pretty please.

And for the record again I LOVED Monica's post and print it off and have it on my desk.

God Bless,

Liz

I would suggest that what the CSN guy was saying is that if you have a personal experience and direct knowledge that something works for you or was bad for you go ahead and share it. I posted mine because what monica* posted appeared to be advocating a possible treatment/prevention etc. without the benefit of saying it worked or didn't work for her. I don't believe this was her intent but I do agree that when we share information especially for newbies that this is just information and not absolute fact. i.e. "surgery causes cancer". I haven't seen a post from anyone where this actually happened. My Chemo was intended to kill those cells that can not be detected. They may or may not even be there. The chemo I recieved after surgery was to decrease my chances of having a reoccurrance. eitter suggests it happened in her/his case. But was it the surgery or the possibility that the surgery site would not get all the existing cancer. In my case floating cancer cells were always a possibility I expect thats why they look everywhere during surgery and take nodes out to look at them. Lymph sys/nodes are generally the cancer highway to other areas. I hope this helps from my view. Maybe if we all listed a quoate from Dennis Miller "I could be wrong". I think we all have had experience with doctors who turned out to be wrong. I guess thats why they are doctors and not God.

spongebob

66Rose said:

All I wanted to know was who he was, you answered that question THANK YOU! And I just wanted my question answered about #9.

And we could debate forever about how we eat in America, and yes I do think how we eat attributes to cancer rates, along with smoking drinking and lack of exercise.

I was guilty before my diag, although was not as bad as the average person. And now I am changing that!

I had a VERY YUMMY Carrot, Apple and Garlic fresh pressed juice today, yum!

God Bless,

Liz

Liz -

You want fries wit dat Buggs Bunny-Dracula frappe?

Don't forget that one cool feature of CSN is that folks can create a personal page. If you don't know who someone is, what their personal cancer journey is, or where they are coming from on a particular issue you can always check out their personal page to gain some insight and perspective.

CSN doesn't really have a moderator per se. We tend to moderate ourselves. The important thing here is that we - as you demonstrated so well - can disagree and discuss and maybe agree to respectfully disagree. That's what's important; discussion and respect.

So... you gonna share the recipe for that juice concoction or you gonna keep it under lock and key!?

- SpongeBob

spongebob

Monicaemilia said:

Oops...it seems that my post has upset a few people and that was never my intention. I just thought some of the points were very good, and I wished I had been told of them a year ago when I was dx'd. On a personal note, although the post mentions surgery and chemo on a negative note, although I have to admit it is nothing I have not heard before, I'll be the first one in line to cut anything out that will make me NED. I will be much more careful in posting in the future. Monica

Monica -

I agree with my cohorts - your post was great! The mark of a good post on a discussion board is how much discussion it generates (which is probably why most of my posts are meaningless drivvle that only get 2 or 3 responses!)

Your post was great and sparked a lot of interested chatter. Keep it up! The last thing any of us would want to do through our discussion is make someone less apt to make a posting. If you feel strongly about something, girl, throw caution to the wind and POST IT! Hopefully if people are put off by it for some reason or another, they'll do like their mama taught 'em and just say nothing at all.

Thanks for your EXCELLENT post!

- SB

StacyGleaso

StacyGleaso said:

FYI....

the CSN guy, or Jose, as we know him, is a vital link to this web site. It is the hard work of him, Dana, and Greta (the founder of this site) who make our discussion pages, chats, and web pages possitle. They work diligently to make sure that information passed through the use of this site is accurate. They work diligently to make sure that folks aren't using this site or its discussion boards as a bible in which to dictate their course of action without any consideration for their personal need or that of medical influence.

I do not believe that Monica meant any harm. But you have to consider that when people read things, they automatically tend to jump on bandwagons and sometimes that isn't good. In a nutshell, the chemo vs no chemo is one debate I would never jump back into. Burn me once, shame on you....burn me twice, shame on me! lol But I think sometimes people read things in search of an "easier" way to treat cancer. Not saying that emily's food lifestyle is easy....my hat goes off to her as I doubt I could ever be that disciplined! lol But if merely eating more veggies cured cancer, don't you think everyone would be cancerfree? There comes a time when medicine may and should come into play. And would it be the surgery causing more cancer or the fact that some cancer spreads, no matter how hard you try to strangle it? Because by NOT removing the tumor surgically, there is a real reason to think it could spread because it's left there to travel.

Anyway....don't misinterpret....I'm not bitter, just feeling the need to defend my pal, Jose.

Hugs,
Stacy

Kinda on the nutrition note...I wonder how Lance Armstrong, one of the greatest athletes in history, got cancer. Talk about a healthy eating lifestyle and (his words) living the life of a Monk! Yet he got it anyway. Go figure.

shmurciakova

Hi all,
Stacy, Just for the record, I am pretty sure I remember reading in Lance Armstrongs 1st book that he had a crap diet of mostly Mexican food and tequila prior to coming down with cancer. At any rate, I don't think nutrition was one of his strong suits - maybe it is now? I don't know but I do remember him saying he went into some type of a funk at one point and started eating very poorly.

As for a vegan diet, you can be a vegan or a vegetarian and still eat a lot of junk food. Just because something does not contain meat or animal products does not make it healthy.

I think we are all afraid to rock the proverbial boat and say that chemo or surgery are not good. It really depends on the individual situation. Unfortunately these protocols treat everyone as if their situations were the same. What is good for one person maybe not good for another. Where one should do chemo, another does not necessarily need to. Where one tumor is "unstable" and not a good candidate for surgery, another can and should be removed.
I just felt the need to chime in.
-Susan

StacyGleaso

shmurciakova said:

Hi all,
Stacy, Just for the record, I am pretty sure I remember reading in Lance Armstrongs 1st book that he had a crap diet of mostly Mexican food and tequila prior to coming down with cancer. At any rate, I don't think nutrition was one of his strong suits - maybe it is now? I don't know but I do remember him saying he went into some type of a funk at one point and started eating very poorly.

As for a vegan diet, you can be a vegan or a vegetarian and still eat a lot of junk food. Just because something does not contain meat or animal products does not make it healthy.

I think we are all afraid to rock the proverbial boat and say that chemo or surgery are not good. It really depends on the individual situation. Unfortunately these protocols treat everyone as if their situations were the same. What is good for one person maybe not good for another. Where one should do chemo, another does not necessarily need to. Where one tumor is "unstable" and not a good candidate for surgery, another can and should be removed.
I just felt the need to chime in.
-Susan

Well said, Susan. Everything cannot hinge on nutrition alone when "getting" cancer. If that were the case, children and infants wouldn't get it. They don't smoke or drink, yet still happens. On the other hand, people can smoke for years and never get cancer, yet some who never smoked a day in their life can get lung cancer. Oh if this thing called cancer only came with an owner's manual, how much simpler it would be! lol

Everyone is different. I personally am grateful I had surgery, chemo, and radiation. I wouldn't change my protocal or outcome for the world. Then again, I was stage 4, and I don't think avoiding surgery was an option.

5 yrs clear and counting,

Stacy

P.S. You joining us in Nashville, Susan? The more the merrier!!!

66Rose

spongebob said:

Liz -

You want fries wit dat Buggs Bunny-Dracula frappe?

Don't forget that one cool feature of CSN is that folks can create a personal page. If you don't know who someone is, what their personal cancer journey is, or where they are coming from on a particular issue you can always check out their personal page to gain some insight and perspective.

CSN doesn't really have a moderator per se. We tend to moderate ourselves. The important thing here is that we - as you demonstrated so well - can disagree and discuss and maybe agree to respectfully disagree. That's what's important; discussion and respect.

So... you gonna share the recipe for that juice concoction or you gonna keep it under lock and key!?

- SpongeBob

I am learning when to duck and run around here! Trying not to take everything personal, although I tend to at times.

Many have said and I totally agree, we all have our own stories and our own way of doing things, when someone ask for information I tell my story and it is my journey, not intended for anyone to follow my journey, we all have our own paths to follow, what makes us feel comfortable. For me my journey and what I have chosen to do makes me feel comfortable.

I love reading everything you all post and I may not agree, but something someone does might sound interesting enough to check out.

I would never criticize someone for continuing Chemo treatment when their body is frail, or for doing Chemo at all. Heck I have done two types of Chemo, if you want to read the *&^% I have been through, read my web page, sorry I do not have one here yet, I am working on that. I in return would appreciate not being told I was reckless for not doing Chemo after surgery or how dare I not follow standard protocol, not saying that anyone has said this to me.

I still feel I am new to this awful disease, please be gentle with me. My understanding and I could have misinterpreted my doctors, was that cancer cells could get knocked lose and spread in surgery.

And on Yahoo groups, there are moderators, so that is why I used that term.

I am not angry, so I hope you do not think I am.

I like your note SpongeBob and I am very curious if there is a resemblance to the "real" SpongeBob?! Maybe if I make to Nashville I can find out.

My recipe for carrot juice is easy......6 carrots, one apple and one clove a garlic, Whala!

God Bless,

Liz
www.runlizrun.com

Unknown

JADot said:

Hi Jose:

You guys do a marvelous job at running this board which has been a life line to me as I fought my battle! You guys are awesome! Thanks for doing what you do!

Cheers,
Ying

This comment has been removed by the Moderator

Unknown

spongebob said:

Dude!

Working on a Saturday? At like 7 pm?? I hope you're getting paid overtime!

Thanks for your comments!

This comment has been removed by the Moderator

KierstenRx

Well said!!!!! Really having trouble staying away from the sugar....