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Small Intestine Adenocarcinoma - Please Help

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

Hello.  I'm new to this site and am looking for folks to talk with and share experiences.  I'm 39 years old and was just diagnosed in August 2013 with adenocarcinoma of the small intestine (jejunum location).  It's been terrifying.  For almost a year I was having some nondescript abdominal pain, underwent clear endoscopies and colonoscopies, and had not received an explanation.  In August, I went to the ER feeling quite sick but fully expecting they would send me home with gas.  Instead, they did a CT which showed a small bowel obstruction and admitted me to the hospital.  While the hospital conservatively resolved the obstruction, my GI doctor didn't like what he was seeing on the scan and was pretty sure it was a tumor.  I was shocked and terrified and when he performed a more invasive endoscopy the following week to biopsy the mass, he confirmed the diagnosis.

Now I am beginning treatment.  I've recently had a small bowel resection where the surgeon feels they successfully removed the entirety of the tumor and several lmph nodes for evaluation.  The tumor did breach the serosa and was about 6 cm, which automatically categorized it a T4 tumor.  Amazingly, they did not find anything in the surrounding tissues, lymph nodes, nerves or blood vessels.  There was no evidence of metastatic spread, and so my T4N0M0 designation equated it to a stage 2b small intestine cancer.

The surgeon felt everything went as well as he could have hoped and there is currently no evidence of disease.  My CEA level is less than measurable, which is also good.  However, given certain risk factors for recurrence (T4 tumor, obstruction, MSS-S) they want to treat aggressively with FOLFOX chemotherapy to reduce the likelihood of recurrence.  Even with this though, there are of course no guarantees and I am terribly frightened.  The statistics I can find online are quite dismal and are in contrast to the somewhat good prognosis I have been given both at my local cancer treatment center and the second opinion I received at Memorial Sloak Kettering (who say I am being treated with curative intent, and so are unwilling to discuss the potential recurrence situation at this point).  I'm being treated similarly to colon cancer of similar stage because this is such a rare cancer that they don't have a lot of direct and applicable data, which is also a little scary.

So as you can imagine, I have tons of questions.

- Has anyone here ever had small bowel cancer?  What was your experience?  Is this a curative situation?

- What was your experience with chemotherapy and the alien pod port that I will be having inserted tomorrow?  I'm frightened of the neuropathy, debilitating cold sensitivity, and risk of infection in particular?

- How do you handle the constant fear and pit in your stomach about the uncertainty and potential recurrence?

- Is it possible to okay (perhaps even cured) years later?  Not to sound greedy, but at 39, I'm wanting 50 more years, not just five.

Any help, support, or experience you can provide would be super much appreciated.  Thank you!

danker
Posts: 1188
Joined: Apr 2012

Beware of most statistics.  Most of the numbers out there are old and not based on latest technology.  I think it was Mark Twain who said

" there are lies,damn lies, and statistics." A barefoot man standing on a surface with an average temperature of 70 could have one foot on a bed of hot coals, and the other on a block of dry ice.  Don't be afraid. Just take it a day at a time.  Good Luck

BusterBrown's picture
BusterBrown
Posts: 221
Joined: Mar 2005

- Has anyone here ever had small bowel cancer?  What was your experience?  Is this a curative situation?

No, I have MCRC, which originated in my large intestines.

 

- What was your experience with chemotherapy and the alien pod port that I will be having inserted tomorrow?  I'm frightened of the neuropathy, debilitating cold sensitivity, and risk of infection in particular?

I've had the same alien port for about 9 years and we get along just fine. I don't even know it's there most of the time.  We react differently to chemo, I've had about 20 doses of Folfox, I'm currently on Folfox and I'm skating through it. The only problem I'm having is with Certuximab, I've gotten some very bad rashes/acne, however I'm treating the rash with antibiotics and the rash does seem to be going away. I'm experiencing some nueropathy, but it goes away about 3/4 days after infusion. Listen, chemo can be very hard, but you'll get through it.

 

- How do you handle the constant fear and pit in your stomach about the uncertainty and potential recurrence?

You don't. I've been living with this disease for almost 9 years and if you were to look at me you would never know I was sick. You'll  learn to live with cancer...

 

- Is it possible to okay (perhaps even cured) years later?  Not to sound greedy, but at 39, I'm wanting 50 more years, not just five.

Yes, there are people on this board, myself included, that have live well beyond 5 years. There are some that are cured.  You bring up a good point, you're 39 yearl old, that's young, you'll handle the side effects better than a 65 year old (see stats!).

Think posiitve an good things will happen...

Peace...

Buster

 

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

The port is an absolute blessing. 

Many a chemo have I watched the nurses trying to access a vein in a patients arm. Once, three different nurses and about half an hour of poking one poor lady. 

Let me reitterate, THE PORT IS A BLESSING!. 

I will remember you tomorrow as you have your surgery, and also as you start your treatment. Be positive. I know it can be hard, but the more positive you are the better it will be for you in many ways. 

Good luck! Be sure to check in often and let us know how things are going. 

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

Sorry to hear your news but there are lots of good folks on this site that can provide support and answers.

Has anyone here ever had small bowel cancer? What was your experience? Is this a curative situation?  I've had stage IV colon cancer since 2007 and have periods of treatment followed by periods of being NED,

- What was your experience with chemotherapy and the alien pod port that I will be having inserted tomorrow? I've had the same port for 6 years now.  I had a PICC line for one round of chemo and really prefer the port.  It's easy to access and you can shower and swim without having to cover it.  If you will be on Avastin it may take a while for the scar to heal.  Mine was hard until I stopped treatment, then if smoothed out. 

I'm frightened of the neuropathy, debilitating cold sensitivity, and risk of infection in particular?  It seems that depending on where you are in the world they will start with FOLFOX or FOLFIRI.  The 5-FU is the same for both, but OX is oxaliplatin and the IRI is Irinotecan.  both have side effects, but OX is cold sensitivity and neuropathy while IRI is diarreha and hand and foot syndrome.  If you are really worried about one, ask your onc about the other.  I've had 26 rounds of FOLFOX and still have some minor neuropathy 3 years later.  Mostly it goes away after treatment is completed, but I still soemtimes feel like I have a sleeve over my calves and ankles.  If it were me, I would ask about the irinotecan instead of oxaliplatin because the side effects won't last as long and the benefit is the same, at least for colon cancer.  Regarding infections, I never had a problem with infections or colds while on chemo.  If your white cell count gets too low, your onc will likely postpone treatment for a week.  I've never had a port infection either.  If you are on OX use hand sanitizer because man public restrooms have cold water, but if you're on IRI it's best to skip it because it dries your skin.

- How do you handle the constant fear and pit in your stomach about the uncertainty and potential recurrence?  I try to focus on life, keep on doing what you've been doing as much as possible.  For me recurrance seems to be something I will continually have to deal with and so I try to do as much as I can when I'm not in treatment.  With time, the fear will subside and will occur just before testing as you are reminded of the cancer.

- Is it possible to okay (perhaps even cured) years later? Not to sound greedy, but at 39, I'm wanting 50 more years, not just five.  The statistics are so dated that I just ignore them.  There are new drugs coming out all the time and they are extending the life of patients.  Given that you are young and just stage II, you have a good chance of living many more years with good health.

Good luck, Traci

Anonymous user (not verified)

I can only confirm what the others have told you because I have IVb CRC and have been through the ups & downs for 5 yrs now.  One thing I know is that you have been diagnosed at an exciting time in cancer research therapies. The direction of therapy is rapidly focusing on particular genomes in each of our cancers.  Because no one has exactly the same cancer.  Until now therapy was focused on stopping cells which are fast growing and rapidly replaced: skin, hair, WBCs, and others.  Being able to reduce a tissue sample to its genomic structure and immune activity has brought researchers to be able to take your particular biopsy and develop a drug that attacks only the cancer cell through a particular genomic pathway or an immune system enhancer that will attack the cancer.  These therapies are still in a developmental stage right now, but within only a few years many cancers will be treated specifically rather than generally.

I happen to be at the end of my routine therapy rope, after a successful 5 yrs of keeping the mets controlled but still active.  I have just been accepted for a consult at Mary Crowley Cancer Research Center ( one of the leading and most aggressive research facilities in the world) to determine which options are available for me to participate in a phase one or phase two trial. I go Monday for my first meeting with one of the research docs. Lucky for me the travel from Fort Worth to Dallas is only about 50 miles which is more than acceptable to me.

Don't worry, you'll be able to handle anything that comes along.  You're at that point right now where all of us have been when we found out we had cancer, overwhelmed, questions, wondering what happens next.  Step back and take one day at a time,  things will become clear as you work through the initial shock. Dan

 

BusterBrown's picture
BusterBrown
Posts: 221
Joined: Mar 2005

That's awesome. I'm very interested in finding out how this goes for you, please keep me in the loop. 

Buster

LindaK.
Posts: 490
Joined: Apr 2013

Hi and welcome to the board.  I have found so many kind and generous people on this board.  I am the wife of a Colon Cancer patient.  My husband was diagnosed in December, 2012 with Stage II cancer, surgery sounds very similar to yours.  He had a large tumor also which had gone through the first layer but not found elsewhere.  He had a port and 12 rounds of Folfox.  The port is great, you will agree once you start IV chemo.  His surgeon told him "No one has ever regretted having a port"  Looking back I would say the first few weeks/months were the most scary, you just don't know what to expect and of course your mind goes to every deep dark place imaginable.  Don't follow information you find on line.  You should only listen to your oncologist, they know you and your case best.  Our oncologist gave us stats from a program he uses for people who are my husband's age, type of cancer, etc.  The prognosis was very good and those are the numbers we keep in mind.  He did have the cold sensitivity with the Oxaliplatin, which seemed to get worse each treatment and last longer.  He ended up back in the hospital after the 5th treatment and then they cut the Oxaliplatin out of his remaining treatments.  He had severe constipation, which most people have the opposite problem.  Stay on top of either condition, call the oncolgoist's office at the first sign of any issues.  He never had nausea or lost his hair.  In fact, he has had an almost voracious appetite.  Be prepared to spend 4-6 hours at your oncology center for treatment, especially for the first one.  Make sure you tell them any strange thing you are feeling, they can easily adjust the meds.

The fear in your stomach will probably never go away, but you will learn to live with it, it will get easier and easier.  I'm not the patient so I can't really speak as many others here can.  This is a good place to ease your fears and express your feelings.  Come back often, you will find it very helpful. 

Linda

annalexandria's picture
annalexandria
Posts: 2573
Joined: Oct 2011

I hope the answers you've already gotten here have helped a bit.  Cancer is one of the most frightning challenges we can face in life, regardless of the stage.  I think, despite the relative rarity of cancer in the small intestine, that it sounds to me like you have a very good shot at a cure.  I had spread to my small intestine, although it started in the large, and this was treated like any other crc tumor, with resection.  The fact that the surgeon was able to remove your entire tumor, and no nodes were involved, is great news!  I know it's hard to see how anything qualifies as "great news" in this situation, but if you spend some time on this forum, you will understand what I mean.  There is always the chance of recurrence, but given your circumstances, you are starting back on the road to good health from a good spot.

Good luck, and keep us posted~Ann Alexandria

PS  I had spread to lg and small intestine, peritoneum, rectum and uterus, plus 5 nodes, and am still here and NED 4 years later, thanks to surgery.  Starting out with surgery is a very good thing.

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

Thank you all for accepting me. I was feeling quite like a little orphan. As you can imagine, there are no real resources out there for someone with my exact type of cancer, and so finding that support has been really hard. I truly appreciate all of you who have taken the time to respond, ask questions, send messages, and make me feel welcome and like I've found a place to not be quite so alone with this. Thank you so very much.

annalexandria's picture
annalexandria
Posts: 2573
Joined: Oct 2011

called a carcinosarcoma.  Usually found in the uterus, almost never in the colon.  As my doctor put it, there was no "recipe in the oncology cookbook" for me.  But I'm still around four years later, and NED for the moment, so while it's not easy to be an "outlier", there is still lots of hope!

mdm2
Posts: 17
Joined: Dec 2013

Not certain if you are still using this website or not but I was just diagnosed with stage 4 small bowel adenocarcinoma that originated in my ileum on 11-30-13. I can totally relate to the age issue as I am 32. Anyway I am still in the stage of praying a lot and recovering from my bowel resection. Good luck.

Daffodil58
Posts: 8
Joined: May 2015

Your stories are encouraging.  My 58 yr old husband was just diagnosed stage 4 Small Intestine Cancer of the Jejunum end January.  There are small metastases in the 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 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 believing his follow-up CT scan in a few weeks will show shrinkage.  Thank you for your stories of your journies .. 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.  :)

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

I am so sorry that both of you are going through this.  If you want to talk, please don't hesitate to reach out.  Otherwise, I am fairly active here too.

Also, I believe it was Danker who quoted Mark Twain to me.  "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 :)

Phil64's picture
Phil64
Posts: 835
Joined: Apr 2012

It sounds like you have good doctors and a good prognosis. Chemo can be irritating but it is tollerable. I (and many others ) have managed to work through chemo. It is managable. Oxciliplatin does cause neuropathy and cold sensitivity. However, I'm guessing your doctors will adjust dosage if/when neuropathy is encountered.

Good luck and best wishes.

Phil

blog: http:\\pscamihorn.me

 

MAliceR's picture
MAliceR
Posts: 98
Joined: Mar 2015

TheLadySkye,

I am sad you have landed here due to cancer, but this is a great place to come for support. I wish I would have found it much sooner then I did.

I am a colon cancer recovering survivor. I was diagnosed just about 4 years ago with stage 3. I had a similar experience in that I had been to the Dr a number of times for symptoms of this or that and no one caught it. I was actually on vacation in Europe when the symptoms got so bad I nearly didn't make it home. I went to the Dr the next day and was sent to the hospital in an ambulence. The rest is history. It was a very frightening time. So I can relate to what you have been going through. Let me assure you, you can make it through this. Remember to advocate for yourself. If you don't no one will. Ask questions and expect answers. If you aren't comfortable with a Dr. get a new one. This is your treatment and you should be an equal partner in it. 

As for your port. I can tell you from experience you want one. The first time through chemo, I did 8 sessions by IV unfusions in my arm. Honestly the pain in my arm was worse then the chemo. Be sure to let your Dr know if you start experiencing neuropathy. My oncologist was supportive of acupunture and I had 38 sessions. I am fortunate that I have been left with very little after effects. 

I had a small recurrence 22 months ago. I had another surgery and more chemo, this time I was ready for it. I had learned from experience. I had a port and it worked really well. No sore arms or vein issues to deal with. I still have it in place even though I have been finished with treatment since July and so far have clean scans. It isn't bothering anything so I decided to wait a bit before having it removed. It's kind of a security blanket of sorts I guess. 

Do yourself a favor and don't focus on the odds or percentages. Everyone is different. Focus on your treatment and healing. Think like a survivor. You are strong. You can have a chance for life. Live it every minute.

Feel free to ask for help if you need it. I see a cancer counseling specialist. It really helps process everything. Give yourself the gift of emotional support.

I wish you all the best in your uncoming journey. I speak for myself and I am sure all of us here when I say we are here for you.

Blessings

MAlice

 

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

This is an old post, with the date of October 2013.

The Lady Skye is still posting though.

Sue - Trubrit

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