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Metastatic Adenocarcinoma of the Jejunum (Small Intestine)

Daffodil58
Posts: 8
Joined: May 2015

Finding some stories on these discussion boards that are very encouraging especially since this cancer is rare but have yet to find a match to someone else going through this same cancer.  My 58 yr old husband was just diagnosed stage 4 Small Intestine Cancer of the Jejunum at the end of January.  There are small metastases in his liver, lungs and peritoneum, and he was given a prognosis of 30 months.  What I find hard to grasp is that we're told 30 months yet there appears to be many cancer patients in a similar diagnosis, whether their primary is SIC or CRC, who are living many years, so why isn't his prognosis longer.  In any event, my husband is in Cycle 6, CEA marker going down and so we're believing his follow-up CT scan in a few weeks will show shrinkage.  Thank you for your stories of your journeys ... I now believe we're looking at more time than thought, therefore allowing a possible cure to come along.  There appears to be some great developments (genome) on the horizon. Would love to hear from others with this cancer  :)

 

Trubrit's picture
Trubrit
Posts: 4856
Joined: Jan 2013

I am glad that you re-posted here, so that we can welcome you to the forum.

I know there are folks here who can help you, just not me as I had the standard, run of the mill CRC. 

I am sorry that your husband got such a short prognosis. If you look at the stats, you will see that a large percentage outlive their Doctor's prognosis and there is no reason your husband can't be one of them. 

When push comes to shove, the Doctor's can ball park figures. Nobody knows what date any of us are going to die (well, maybe God if you are a bleiever). So continue reading the survival stories here and BELIEVE that your husband is going to be one of them. And, if your hubby believes that as well, then the chances are, he will be around for allot longer than 30 months. 

Others will be along soon. Visit often and we'll be here for you. 

Sue - Trubrit

Easyflip's picture
Easyflip
Posts: 588
Joined: May 2013

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

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

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

traci43's picture
traci43
Posts: 775
Joined: Jul 2007

I have CRC and started this journey 8 years ago next month and was told 2 years, but I was being given a drug (Avastin) that had only been approved 6 months earlier so there really weren't good stats for that.  There are so many advances in cancer treatment that I think the stats are useless, personally.  When I was first diagnosed I had 12 rounds of FOLFOX, now it sounds like they are only doing 6 of the 12 rounds with the Oxalplatin to reduce neuropathy with the same good outcomes.  So things are changing.  Stay positive, look into complimentary medicine.  The folks on this site are a wealth of information from both Eastern and Western Medicine.  I wish you and your husband the best.  Traci

TheLadySkye's picture
TheLadySkye
Posts: 195
Joined: Oct 2013

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
Posts: 8
Joined: May 2015

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

beaumontdave's picture
beaumontdave
Posts: 996
Joined: Aug 2013

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
Posts: 8
Joined: May 2015

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.

Trubrit's picture
Trubrit
Posts: 4856
Joined: Jan 2013

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

GSP2's picture
GSP2
Posts: 103
Joined: Feb 2015

For every victory or at least a negative annual scan there seems to be a loss of a loved one.

We all hear about statistics being not applicable to us particularly in the "modern age".

And to a large extent this is true. The only truth is one's own condition.

When a doctor is asked to give a prognosis or an opinion on how much time is left he does so

quite reluctantly. Specifically with this fear. I think the worst thing is to overestimate how much time

one might have particularly if there are major life events down the road - birthdays, births, weddings,

travel and the like. The proverbial fulfilling of the bucket list if we have to call it what it is.

In the end it is just an educated guess and we always hope we are wrong.

 

Steve.

HollyID's picture
HollyID
Posts: 951
Joined: Dec 2009

My deepest condolences.  I am so sorry that you're having to go through this.  

LindaK.
Posts: 490
Joined: Apr 2013

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

tmaccorm
Posts: 2
Joined: Feb 2016

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.     

harpseal
Posts: 1
Joined: Mar 2017

My mom was 59 when she was diagnosed with Adenocarcinoma of the Jejunum.  She struggled with heart burn and indigestion for around 2 years prior to her diagnosis which was a symptom of this cancer we shrugged off.  It was detected by a loss of Hemoglobin in her blood work.  Then she was given a occult blood test which was strongly positive.  Next took over 6 months to get through the barrage of tests, colonscopy, barium test, upper GI.  The upper GI was the one that found it.  She was Stage III with lymph node involvement but no spread to organs, the tumor was surgically removed in August 2015.  She began Chemo in September 2015.  The Chemo ravaged her but I do believe it extended her life, she had to stop it from November through January due to complications from it. She did 6 months of high intensity chemo and her PET scans came back unchanged from before the start of the chemo but no further spread.  Within a month of pausing the Chemo for her to recoup from it the cancer had spread to her stomach, lungs, liver and ovaries.  This was in June 2016.  She again began a Chemo regiment that was to rough and had to discontinue in September 2016.  She passed on December 2, 2016.  She survived long enough to see her first granddaughter born on September 6, 2016.  I do not believe without the Chemo should would have been here to hold her granddaughter.  

I remember when she was diagnosed I had a very hard time finding any information online in regards to her cancer.  She went to Moffitt Cancer in Tampa for treatment and to find there was no actual "chemo treatment" for this type of cancer because of how rare it is.  So she was given a colon cancer regiment.  Just realize with this diagnosis that the odds are not in your favor and begin to enjoy the time you have left.  My mom worked up until September 2016 still holding out hope that she could beat it, she never got to retire, I wish she would have accepted her fate earlier on and enjoyed the time she had left instead of worrying about going to work when she was so ill.   Life is short enjoy each day and don't stop enjoying worrying about tomorrow, because tomorrow may never come.

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