Metastatic Adenocarcinoma of the Jejunum (Small Intestine)

why doctors try to call your expiration date. There are certainly plenty of grim stats out there but people beat the odds all the time. Plus the docs don't know what new advances and discoveries are around the corner. I would encourage you to have an optimistic and hopeful attitude, I think it helps you medically and it just makes for a better life in general. I don't know much about your husband's cancer but I wish the both of you the best of luck in your journey.

Easyflip/Richard

Easyflip said:

I don't know

why doctors try to call your expiration date. There are certainly plenty of grim stats out there but people beat the odds all the time. Plus the docs don't know what new advances and discoveries are around the corner. I would encourage you to have an optimistic and hopeful attitude, I think it helps you medically and it just makes for a better life in general. I don't know much about your husband's cancer but I wish the both of you the best of luck in your journey.

Easyflip/Richard

I remember when I was first informed that I had cancer. I was told by the doctor who had done my colonoscopy and he wasn't me family doctor. Once he told me I had cancer I asked him "how bad is it?" because isn't what they do on TV and the doctor tells them how long they have to live and what stage it is. His response was "it's cancer, it's bad". I didn't find out what stage it was until after the surgery and I've never been given a time frame of how long I'll live.

Many people live much longer than the amount of time suggested by their doctor. There so many factors and things they don't know and new treatments. I think it's unfair to even try to quantify a potential length of time a person will live.

That being said, best of luck, I'm not familiar with your cancer but I hope it's very treatable.

Jan

Hi Daffodil (one of my favorite flowers)!  I'm so sorry that this rotten (and rare) disease has brought you here, but I hope you will find it an invaluable resource as you face the fight ahead.

As Danker told me when I first got here and was a total ball of panic, "There are lies, damned lies, and statistics."

It's been a mantra I've clung to through treatment and after.  And so far, light willing, I am kicking the statistics firmly in the teeth.  I do feel like a little bit of a lab rat even at my cancer center...small intestine cancer is very rare, and so everyone is interested.  And treatment has not been without the challenges all cancer patients seem to face.  But I'm coming up on two years since diagnosis, and so far am NED since surgery (though I had adjuvent chemo because I'm young and the approach was throw everything but the kitchen sink at it in hopes of a cure).  No one has used the "Cure" word yet for me, but so far so good.  I'm still reaching for it

Everyone's path through this is different, but if you're open to suggestions, I have a couple.

Again, his cancer is rare, so if possible, have him treated at an actual cancer center.  They are better equipped and experienced to deal with this.  If feasible, consider Memorial Sloan Kettering Cancer Center.  They are tops in the nation right now for GI cancers, but perhaps more importantly, they have procedures and surgeons willing to do what isn't being done elsewhere and to good effect.  You want to be working with a facility and surgeon who is working to get your husband resectable...liver, lungs...if he responds well enough to chemo and depending on met placement, resections are options.  HAI pumps and HIPEC are also possibilities depending on resection outcomes and chemo responses.

I'm not second-guessing your doctor and I'm not trying to tell you what to do.  I'm just sharing my own experiences that in looking, I've found that there are way more options available than I knew at the beginning of this fight.  If you would like to speak further, please know that I am here and willing to help in any way that I can.

*hugs you both to itty bitty pieces*

Daffodil58 said:

Thank you everyone for your

Thank you everyone for your input .. Very informative and appreciated.

I never had much use for ballpark estimates, we wouldn't let the docs go there for either my wife's[brain] or my[colon] cancer. I figured we had today, tomorrow was likely, and the rest was up for grabs, and would take care of itself. Everyone copes in their own way, that was ours. I hope you find someone who's walked that path your on and can tell you what to expect. New stuff comes online fast these days, so a hopeful outlook is a reasonable stance as well.

Daffodil58 said:

My last post

My husband passed away at the end of November, just a few weeks before his 59th birthday.  Not even close to the prognosis given at his diagnosis.  I miss him terribly.

I am so very sorry to read this sad news. 

It is hard enough being given a 'time' and then to have the end come months before that time. 

Be good to yourself. There is no time limit on grief. 

Thank you for coming back onto the forum to say goodbye. I wish you peace as the month pass. 

Sue - Trubrit

I am so sorry for your loss.  I can feel your grief in your short and sad update.

My husband passed away in November 2014.  In August 2014 he was told he had 2 years and in September he was told he had weeks to months left.  6 weeks later he passed.  He was 61 years old.  Getting news like that is devastating.

It's horrible to see your husband suffer so from cancer.  My husband's colon cancer spread to his small intestine and then lymph nodes which caused other issues with his bile duct and duodenum.  He had two stents placed and I remember reading about the procedures on line and reading something about "extending life a few months" which just wrecked me.

Things do get somewhat better as time goes on. 

Linda

Most everything in the cancer diagnosis and treatment universe is driven by statistics.  But these statistics are based on very large sample sizes.  As such, they more or less represent the so-called general population, and form the basis of the treatment protocols we are asked to undergo.  But however well statistics might reflect predicted outcomes for a general population, they cannot and probably never will be able to predict or reflect individual experience.  

Hence, no doctor can say with any degree of accuracy how long anybody is going to last.  They can make a prediction on the basis of the general population -- which is the case whenever a doctor tells us how long we might have to live -- but they can't make such a prediction about you as an individual.  

I wish doctors would tell patients this, as their words do carry a lot of weight.  Sometimes, and with some people, what they say may very well turn out to be a self-fulfilling prophecy.  So it's probably best not to give their words too much weight.  They may be right, of course.  But they might also be wrong.