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Anyone given the "5 year" speech?....

gizzyluv's picture
gizzyluv
Posts: 144
Joined: Feb 2013

I'm just curious how many of the Stage 4 survivors were given the 5 year survival speech by their doctor?....More importantly, if you were, how long ago was it?....(pretty obvious where I'm going with this....)

KayeKay's picture
KayeKay
Posts: 122
Joined: Jan 2013

Dx Stage 4 Feb. 2011 speech was somewhere around that time. Rediagnosed March 12 this year with recurrence. just had liver resection, rfa, and liver pump. start chemo april 8th.

gizzyluv's picture
gizzyluv
Posts: 144
Joined: Feb 2013

Were you ever told you were cancer free?....I mean did you do chemo & then have a recurrance this year?

KayeKay's picture
KayeKay
Posts: 122
Joined: Jan 2013

yes i did chemo and went into remission in sept. 2011 and it just recurred in my liver this year

smokeyjoe
Posts: 1428
Joined: Feb 2011

I got the  it's systemic, there is cancer outside of your colon and you may live two years.      He didn't say that till I asked  "how long" ..... I shoulda kept my mouth shut. 

KayeKay's picture
KayeKay
Posts: 122
Joined: Jan 2013

ya know the first onc i seen said i had two yearsto live max. its been two years. granted i was just rediagnosed i will live past two years

smokeyjoe
Posts: 1428
Joined: Feb 2011

Laughing

gizzyluv's picture
gizzyluv
Posts: 144
Joined: Feb 2013

So, how are you doing now??

Chelsea71
Posts: 1170
Joined: Sep 2012

We got the "you've got two years, max." speech. That was two years ago. I guess we should be feeling pretty nervous right now. They should just say that there is no way of knowing. Some people do better than others.

sailor_on_a_lee...
Posts: 51
Joined: Jun 2012

Could you please expan on the "five year survival speech," by providing a brief synopsis.  I don't think I ever got that one.  Thanks, Rick

LivinginNH's picture
LivinginNH
Posts: 1343
Joined: Apr 2010

Hi Rick,

You can look up all of this information on the internet.  My Rick was given a year, he lived for three, and I cherished every day of those "extra" years.

5 year survival rate:

"When reading research regarding cancer treatments, you'll notice that the term "5-year survival rate" is often mentioned. The 5-year survival rate is a percentage of patients who are alive 5 years after they were diagnosed with cancer (not counting those who die of causes unrelated to the cancer).

Take care,

Cyn

lilacbrroller's picture
lilacbrroller
Posts: 334
Joined: Jun 2012

Well, I didn't get a specific time frame but I'd feel very lucky if I got five years.  The first guy I talked to did tell me that the horse had left the barn!   Miracles happen, but over the course of my treatment, from what I've read and have been told, the "lucky ones" who are stage IV have mets in one section of their liver, or are concentrated in a maneagable place, and can just have serial resections.  Cut off the liver mets, treat with chemo. Remission, couple years later, mets regrow in same place, more hacking of the liver. Even for liver plus lungs, if in one section only, hacking is possible and can prolong life. Those folks tend to iive longer because of where the disease is and the fact that it can be controllled by surgery or other targeted therapy.  

 I was hoping for surgery but keep getting told no, because my mets were on both sides of my iiver and both sides of the lungs, and practically every frickin' lymph node in my body. Even though I had a good reaction to my initial chemo round (primary rectal tumor is gone), mets gone or shrank, no lymph activity, and didn't light up a pet scan 2 mos ago.

I'm not quite giving up on the surgery option yet (one surgeon said he would cut if the tumors in my liver didn't grow back) but now after 10 mos of living with cancer, I have a better idea of how disease progression affects us. My mantra is "thou shalt not covet thy neighbor's cancer treatment!"  Now I do understand why some people who are stage IV get to have surgery and others don't... i.e why not me????  If anyone does know a center who would take on a hard luck case like me and not just prescribe chemo, I'm all ears. Message me privately or post it. 

When I talked to doctors (and I have good ones), they probably didn't know what i didn't understand, if that makes sense.  The horse comment could have been more tactfully given, yes, but I get it.  

I always think about the future - I am always planning - and it's really hard for me to "live in the moment" and that is what I have to do with my remaining time.  Hard. Hard. hard.  And as I tell my friends, I am not in a hurry for time to pass!

- Karin

 

 

renw's picture
renw
Posts: 282
Joined: Jan 2013

I was told, 2 months without treatment. 12-36 months with paliative chemo. (assuming it works) oh and was told that there is no cure, but that miracles do happen, though neither of the 6 oncologist I had seen to date have ever seen one of these. Certainly does not give you a warm fuzzy feeling.

PhillieG's picture
PhillieG
Posts: 4683
Joined: May 2005

and know enough not to ask a question that no one can accurately answer. I really believe it's a guess at best but I do understand the wanting to know

BTW: I'm Stage IV CC and didn't ask over 9 years ago

abrub's picture
abrub
Posts: 1543
Joined: Mar 2010

I was told I had "Garden Variety Stage 4 colon cancer, median life expectancy 2 years, but with my unusual presentation (appendix) the dr said he could probably "get me" 3-5 years.  That was 6 years ago, and I'm in total remission (oh, yes, and I switched doctors!)

Dyanclark's picture
Dyanclark
Posts: 272
Joined: Apr 2012

My husband started out stage 2 in 2008 and cancer had not spread to any part of his body organs etc.   Now fast forward 2012 and cancer came back in pelvic area lymph nodes.   I dont even ask what stage my husband is now it cant be good probably stage 4.  He is in a remission again.   He had chemo most of last year and surgery and that has halted the cancer for how long who knows.  Dr. said remission maybe 3-5 years but he will always be fighting to stay ahead of cancer.  I am afraid as soon as he stops all treatment cancer will just start growing again.  He is just on Vectibix a very mild form of chemo.    We have been for second opinion to USC and same story.

Our neighbor had same cancer  23yrs ago in colon, then 8 years ago had 2/3 of liver removed due to cancer.   He is still in remission.  WHO KNOWS EVERY STORY IS DIFFERENT WE HOPE FOR THE BEST.

Hugs George & DyanUndecided

steved
Posts: 836
Joined: Apr 2004

For me it is partly about moving from the- we are trying to cure you phase - to the - you are palliative and the treatments will aim at controlling the disease stage. When we get that message it is natural to ask 'how long?' which docs Hate as they know they are thesimply applying population stats to an individualwhich is hugely inaccurate. I was given a year or two but in that time the new surgical option of radical amputation and pelvic clearance was published in a journal and having gone down that route I move out of the terminal group back into the - we are trying to cure group. It is as strange to move back and try and have hope of cure as it is to let go of it.

Newoptions, surgicallyand medically do arise as we progress and treatments develop but it individual how we manage trying to accept we are terminal and this illness will kill us ie how much we hold onto hopes of 'miracles' or how much we simply accept that and focus on living a quality, time limited life with cancer.

Steve

janderson1964's picture
janderson1964
Posts: 1830
Joined: Oct 2011

I have been stage IV for 7 1/2 years now and been through 2 oncologist but was never given a time frame. It really makes me mad when hear about people getting an experation date. 

barbebarb's picture
barbebarb
Posts: 464
Joined: Oct 2011

Hi -
Diagnosed Stage I - Fall 2008-no chemo or radiation
Stage IV - September - 2011 - was told 50/50 chance - only symptom was weird breathing on left side at night. Chest x -ray to ct showed lung nodules and small liver tumors. See my profile.
I never ask about a date but do live each day to the fullest and keep it all in perspective since I had a surprise seizure and brain tumor met removed in December. Surgery was a walk in the park compared to other two surgeries. Thank god I had a friend with me. I was parked in my car when the seizure hit. This was a wake -up call and pulled my two young adults and ex -husband together to check on me more....Currently on folfiri -tolerating well, first brain mri, no evidence of cancer. Scans and next mri soon...
I don't believe the doctor's always know.
Keep the faith and strong mind to keep moving forward....
Yoga helps me tremendously.

Wishing you the best -Barb

Sundanceh's picture
Sundanceh
Posts: 4342
Joined: Jun 2009

That it would be "Highly Unlikely" that I would see the following Xmas in '08.

That was 5-years ago for anybody counting...

Overall, I'm set to make 9-years this June. 

I didn't go crazy - I didn't freak out.  Something silently and calmly snapped in my head and I became dogged about showing my oncologist and the surgeon that they were dead wrong about me.

Just gained a solid confidence as I acknowledged his reply.  All I was thinking was..."you don't know me."

 

ron50's picture
ron50
Posts: 1322
Joined: Nov 2001

I was stage 3c into six nodes,trouble was it was a nasty highly aggressive ca. My surgeon told me straight up If there is anything you want to do ,do it now your ca is too aggressive and into too many nodes,you probably have around three years. Well it's over fifteen years later ,still ca free. Long term side effects of the ca and chemo give me a hard time but no ca... Ron.

KathiM's picture
KathiM
Posts: 7948
Joined: Aug 2005

It was the wrong cancer, in the wrong place for it...and there were only 37 cases ever reported...and most 'only' had 6 months to live...

I lived past 6 months, on to my next cancer treatment for unrelated breast cancer...right now, 8 years later, in remission on both...BUT both were in the lymph system, and can return whenever...still will be staged the original way, but treated as reocurrance...

 

I feel I need to share my 2 cents...because I still feel that life is precious, and I live my life differently now.  I look at cancer as a large bird, flying behind me just out of my line of vision...whenever it flies closer (as it is now...I am having symptoms that are familiar to my first fights), I make an appointment with my doctors to check it out....

Living with a chronic disease makes the body and soul weary, but the alternative, IMHO, is not a choice for me right now...

I send strong, loving hugs to everyone!

Hugs, Kathi

cinreag
Posts: 154
Joined: Oct 2012

I wasnt given a specific time frame but was told there was a 50/50 chance of my cancer (small intestine) returning to my abdomen or liver, and if that happens there will be no cure. Since joining this board I realize that it seems all colon cancer, if it returns, returns to abdomen or liver. And it may be alright to still hope for a cure. Cancer is a terrorist. It stalks you, and messes with your peace of mind, even when there is no obvious sign or symptom of its being there.

gizzyluv's picture
gizzyluv
Posts: 144
Joined: Feb 2013

This is to everyone who replied to my post, thank you all for sharing your stories with me. Once again, I feel better now. I just sit & "stew" sometimes, thinking of all the possibilities, good & bad. Bottom line is Jason is as stubborn as a mule & is determined to give the big C the fight of a lifetime! I know it's not gonna be easy, but I'll be with him every step of the way. (well, me & the good lord above! Wink) By the way, Jason's next chemo treatment is Wednesday, & he is still doing exceptionally well. I know he may still get the bad side effects, but I pray he continues to do as well as he is now. (((HUGS)))) to you all! Kris

AnnLouise's picture
AnnLouise
Posts: 276
Joined: Mar 2013

I am glad to hear that he has a fighting attitude and you are there by his side. Sounds like a winning combination to me! Hope his chemo continues to go well.....I will be thinking of you Wednesday...  ~ Ann

Momof2plusteentwins's picture
Momof2plusteentwins
Posts: 474
Joined: May 2012

Diagnosed 4/11/2012 - Stage IV - 1 met to liver. My onc never gave me a time frame. He said he could line up 10 of me with the same rectal cancer and same liver met and have 10 different outcomes. He was honest and told me he didn't know what would happen and how I would respond. I am currently in remission and getting CTs every 3 months.
Sandy :)

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