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what are the odds?

peanutbutter
Posts: 4
Joined: Apr 2011

Do you know what the chances are that colon cancer will metastasize to the brain? Between 1 and 3%. That means there is a 97% that it won't happen. This location of met is being seen more now in colon cancer patients because of extended survival time. As a result of prolonged survival with metastatic disease, the incidence of brain mets are expected to increase. We just can't win can we? There are 2 types/locations 1) supratentorial, or above the cerebellum and 2) intratentorial, at the cerebellum. Prognosis with even a single lesion are 9 mos. and 5 mos. respectively. Palliative care only to reduce headaches from pressure include radiation or surgery. Nothing curative. Tumors show a an CXCR4 expression by tumor cells and usually occur with long-standing lung mets. Sorry for the crummy news, but perhaps someone will be experiencing the same thing and want information as I did for my husband. Source: Tumori 91:280-282,
2005.
Dorothy

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

Hi Dorothy

7-years ago when I first was dx'd with CRC, I did some research on the path that this cancer takes. The path was Colon or Rectal - Liver-Lungs-Brain with the possibility of it going to the bone itself.

For a new person at that time, it was sobering news to be sure. I had actually posted about this some time back and had discussion on this. I'm on stop #3 right now in the lung, so the thought of the cancer going to my brain has been in the back of my mind the entire time. It's the one thing that truly petrifies me, because I know that would be the beginning of the end.

Recently, I sat down with my oncologist to discuss this very topic. (We have lost 3 members to brain mets).

Of course, he told me it is rare for this to happen, but if it does, then there is NO CURE for colorectal mets to the brain. Devastating news to say the least. It seems that there is a better chance with primary brain tumors than CRC mets...as some of those primary brain tumors are slow growing and can be treated and life extended.

Ours seems to move so quickly once it gets in the brain, that it is over before you can blink. From what I've seen by our own membership is about 3-months from dx to end of life. One of our group went with surgery and radiation, but it left him in a bad way and he subsequently passed away.

I watched another fellow have the surgery only and went to visit him before he passed. I barely recognized him and I saw firsthand what the cancer did.

And one of our group decided not to take action - went on one last trip and spent her remaining days with her family before she passed.

So, no one who has had brain mets on our forum has survived, which tends to lend credence to my onc's opinion that CRC brain mets are "not curative."

No one wants to talk about this - perhaps because they don't have the information or just tend to believe that there is always hope, but I've seen first hand what this does and have taken notes.

So much in fact, that if this were to happen to me, I've come to the conclusion that I would stop fighting and take any good days I got. You chew up whatever good days you get by fighting and in the end, it looks to be over.

One of the things you said really caught my attention - the fact that with the prolonged survival rate, more instances of brain mets are showing up.

You're right, it's always something. People just don't realize the power of CRC - it is relentless in its attack. It's the #2 killer among cancers for a very good reason.

I'll just hold out hope that myself and none of our folks ever have to deal with that aspect of this disease.

Thanks for your post.

-Craig

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3908
Joined: Nov 2010

more challenges, but at least with knowledge we can fight. so thanks as i was not aware of this trend. i just did a post about a lecture on integretive medicine, the speaker actually suruvived a recurrance of brain cancer. checkout the lecture for his advice on preventition.

thanks for posting and welcome to the board.

craig, the relentless power of crc. well sometimes i forget.
i am going to suck down on some spinach and cabbage juice as soon as i get out of hospital. the juice is not as scary as crc and it will kill the suckers.

hugs,
pete

mukamom's picture
mukamom
Posts: 402
Joined: Oct 2010

it tears at my heart

BettyJoM's picture
BettyJoM
Posts: 86
Joined: May 2011

you guys,
pete and Craig especially. Its frightening to read your posts.
frightening but good that someone is doing the research we need. I dont know about others but I read everything you write and try to absorb it all. I watched that entire video and then I backtracked and made some lists for myself

I have a juicer coming in the mail. I have some gas problems and diarrhea, anyone have a suggestion for drinking raw stuff...does beano work?

I am going to ramble today, random worries, please bear with me, I feel the need to vent

I have 2 daughters, both married and 3 kids each. the oldest didnt marry well and depends on me so much I am afraid to die, afraid that my grandchildren, aged 14, 5 and 3, need me too much. Maybe thats what is supposed to make me fight?
My husband died 13 years ago..dating is terrible when you have kids like mine. NO ONE is good enough

My last boyfriend was a good person but very dependent, an Italian prince, 5 years, he latched on to me then and I let him.
3 months ago I went to the cancer wellness center near me, during the initial interview the wonderful director asked about him, was he emotionally supportive?, NO, did he physically help me or around my house? NO, it was like a light bulb, I was driving home thinking, financially supportive? NO. He doesnt have a mean bone in his body and he bought me big gifts occasionally. She said to me, you have cancer, ITS ALL ABOUT YOU NOW.
No, I was diagnosed in august and nothing changed, he doesnt do hospitals, or treatments, I could go on and on

bottom line is he is a big aggravation. if I loved him enough it wouldnt matter so I guess I dont, not enough anyway
I had tried 6 other times in the last 2 years to end it with him but he managed to wiggle his way back in once I got lonely enough. he was a big disappointment when I was sick

I wondered what happened to the intelligent person I used to be. a dedicated nurse who spent most of my free time volunteering or doing charity work. I was a semi finalist for the Jefferson Award for community service work, was on the nursing calendar for excellence for my last year of working. Just because my health declined am I a lesser person who has to settle?
Its easy to say I would rather be alone than be with the wrong person but its difficult to live alone when you are sick.
when I broke off 3 months ago, number 7, I promised myself it would be the last no matter what happens to me.
This time I told him I met someone else, at the cancer center.
I blocked my phone, his only way to me is emails, he would not come to my house.

my resolve is weakening my friends. my grandchildren are taking turns coming over and when I can afford to we do things. I have contacted some of my old friends from work, I am going to happy hour today with them. I am hoping that by re-entering some adult friends into my life I will be Ok. I wish some of you guys were close by.
I would not look for any male friends right now...no one wants to be with someone who is sick.
I have to make sure that the kids dont entirely consume my time.

dont know what all brought this on, yes, he sent me a few emails this morning
I am just lonely,
my verizon email is nursercht53@verizon.net
I am not worried about any of you and sometimes I cant find you on here

I just read this and I sound like a madwoman. LOL
come on guys help me stay strong

Love, Betty Jo

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

Loneliness and I are old companions - I just walked 9 of the loneliest months of my life, so I definitely get it. When you are sick, loneliness compounds itself even more and is much more prevalent than when we are well or doing better.

"I would not look for any male friends now." Wish I lived in range, I'd love to talk to you. I'll be your friend if you want:) I'll do my best to keep you strong. It's ok to have your resolve weaken - that's all part of the experience, it's staying there that can be the problem. We get down - then we get up:)

I'm known for occasionaly posting the "hard post." I'm sunny and encouraging as well and write all kinds of post, but I am FIRMLY rooted in the realities of this disease. I just figure we do better with the truth. When we can wrap our minds around the realities of the disease, it EMPOWERS us...it may frighten us, but after the shock wears off, we actually become stronger people for knowing the realities of what is out there.

And when I learn something, I share it with the group (good or bad). I'm not doing it to hurt people or discourage them or take away hope...I'm sharing what I've either experienced, witnessed, or spoken to medical professionals about and dealing with things head on is a good approach and gives us a "sense of control" against our cancers...and I'm about whatever we can throw at this guy, because he's not cutting us any slack. So we've got to get smart and educate ourselves on what is in front of us. We take the good with the bad, but "knowing" does help us immensely. I believe this with all my heart.

It's probably a good idea to let this guy go for you - you need some support and if you can't get it from him, then being dragged down with him certainly makes it a little harder on you.

Alright, Betty - I'm going to give you one of my mottos..."You may bend, you may waver - but you will not break." Stay strong - stay focused - stay attacking.

All the best!

-Craig

plh4gail's picture
plh4gail
Posts: 1238
Joined: Oct 2010

Dear Betty Jo....do we ever have some things in common!!!!

Love, Gail

tootsie1's picture
tootsie1
Posts: 5056
Joined: Feb 2008

That's very sad information. I was not aware of it.

*hugs*
Gail

plh4gail's picture
plh4gail
Posts: 1238
Joined: Oct 2010

Made me sad to read. Sorry. But I guess it's good stuff for someone.

Lilmiss82's picture
Lilmiss82
Posts: 257
Joined: Dec 2009

With mets in my lungs and deemed inoperable this bit of information is scaring the crap out of me!! I guess I shouldn't be in the dark and in denial of my situation but it's now another thing I'm now afraid of.

herdizziness's picture
herdizziness
Posts: 3642
Joined: Apr 2010

What a cheery post. Excuse me while I go worry about headaches.

pepebcn's picture
pepebcn
Posts: 6352
Joined: Aug 2010

a terrible headache !

jjjnettie
Posts: 8
Joined: Jul 2010

sigh.....I had this talk with the docs at hospital only yesterday.
Still wrapping my head around it. I have Lynch Syndrome, so while they "cured" me of rectal cancer, I still have a higher than average chance of getting cancer.....well, just about everywhere.

geotina's picture
geotina
Posts: 2122
Joined: Oct 2009

If I read this right, the source is information that is 6 years old.

A lot has changed in the cancer world in the last six years.

While brain mets is always possible, many people live a long time with lung mets that never go to the brain.

Tina

John23's picture
John23
Posts: 2140
Joined: Jan 2007

Re:
"If I read this right, the source is information that is 6 years old.
A lot has changed in the cancer world in the last six years. "

Actually Tina.... very little has changed! There have been some
advances in surgical procedures, and advances in earlier detection,
but the attack on cancer has been relatively the same!

We should keep in mind, that the "statistics" we feel are "old",
have been cumulated from the past10 or more years.

"New" statistics are only projections of what the companies
want to broadcast in an effort to sell their product..

Those "projections" are as valid as what you or I can project
what our income will be in 2024; it's hypothetical, not based
on fact!

Knowing the truth, rather than wallowing in hope, can do more
good than bad. I doubt anyone desires to be "blind sided" with
a really poor prognosis. after spending months thinking that
there's actually a cure for their cancer.

Face the facts; own the situation, and fight the villain in the
right context.

You can't win a battle by falsely assuming the enemy doesn't exist.

Hopes for better health.

John

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