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Stage IV met. jejunal adeno.-21 yrs old

kinsey0882 Member Posts: 2
edited March 2014 in Colorectal Cancer #1
i'm 21 years old and was diagnosed with metastatic jejunal adenocarcinoma (small bowel cancer) in Feb of 2004. I have been told that this is extremely rare especially in people my age. I was completely shocked to learn this, since I thought the problem was my appendix. A CT scan revealed otherwise.

I had surgery in Feb. to remove a large tumor, an ovary and tube, and pieces of m liver. During my one month of recovery, my tumor grew back to it's pre-surgery size. I immediately started chemo and have since undergone 5 treatments.

I was told from the beginning that there was really nothing that could be done, except to prolong my life as much as possible through chemo. I refuse to believe that there is nothing that can be done. I have a wonderful three-year old son that I have to be here for. So far, all has gone well, but I fear that the chemo may stop working at any time and am wondering if anyone out there is in a similar situation. If so, I am interested any treatment options.


  • RMGill
    RMGill Member Posts: 20
    Very similar situation, despite otherwise good health and no family histery, I was diagnosed with stage IV at 34. Only had some relatively minor bowel issues that I wanted to get checked out. I've also read that its very rare in people in their 20s and 30s and like you I was totally shocked. I spent the first week after diagnosis on valeum and scotch to cope (not a recommended combination).

    I heard the same general words when first diagnosed. They threw out that evil word palliative. However, my oncologist has slowly been getting more positive, the lab tests show my liver is doing fine and my CEA level has dropped. Much like you, I'm looking for alternatives to just extending my life, I want to beat this and live. I've heard much encouragement from the group here and some testimonials of those who have been stage IV and beat this, so that is what is keeping me going.

    Not sure I've given any treatment options, other than to say I can relate and I'm fighting with you, if you like hit my e-mail any time and we can compare notes. Will add you to my prayers, hang in there,

  • RMGill
    RMGill Member Posts: 20
    just had a second thought so adding to my previous post....

    as pointed out to me on this site, don't rely on the stats too much. 90% of colorectal cases occur in people over 50, average age 67 (which means 10% hit those of us who are younger and don't get colonoscopies at the "full" physical we had 6 months ago, ggrrrr!). Anyway, the point is the stats the oncologists are using are very skewed for those who are far younger. Your body is generally healthier, your immune system stronger, and you're less likely to have other health complications. All of which increase the probability of you making it through. Low probability still means some make it (someone always wins the lottery). Never been a gambler till now, but I'm shooting to be that 1 in 10 person that makes it... hard to stay positive but this is what is keeping me going anyway.
  • I am so very, very sorry that you have to be here and my gosh, yes indeed, you are very young to be dealing with this disease. I've often wondered how many more extremely young people this damn disease will have to touch before the lower the colon cancer screening. No doubt you will be hearing from Andrea...sweet as can be...and she too was diagnosed with stage iv colon cancer...I believe, if memory serves me correctly, that she is just about your age...perhaps even a little younger.

    For me, I am caregiver to my husband who was diagnosed last year at stage III...granted he's older than you but no where near the average age of 67!!!! Be that as it may, Rick hit the nail right on the head...there are lottery winners out there every single day and I for one feel that it May as well my husband, or for that matter, it can be anyone. Don't pay attention to the stats...each person is an individual and when you consider the high numbers of survivors as a percentage of those diagnosed each year, there's a darn good chance that you will beat this disease. Hang tough...keep fighting, and don't loose your hope and faith that you will make it. The power of positive thinking and prayers is awesome and I will most definitely keep you in my prayers.

  • sharonM
    sharonM Member Posts: 12
    First of all I am really sorry to hear about your situation, not fair is an understatement. I am 41 years old and diagnosed in April 2004 with stage IV as well. My oncologist had the same kind of story for me as well. Since his initial prognosis I have kept plugging at different opinions from different doctors. I recently went back and saw my surgeon who removed the tumor. He had a different story, one I liked much better. My met is on my liver with cancerous lymphnodes in the bowel area. He felt surgery was a definate option (my oncologist said surgery was absolutely not an option). He felt if I responded well to chemo and stuff shrunk than he would go in and resect the liver and have another go at the remaining lymphnodes. He said he thinks outside the box, but alot of surgeons would not even go there. That was just what I needed, someone who did not so readily throw in the towel because of statistics or their past experience. Long and short of my story is there is no one like you and you can do this. Seek out other advice from as many people as you can, until someone starts saying things that make sense to you and how you want to proceed with this disease. I also bought the book Beating Cancer with Nutrition. It's a great book with a completely different perspective, of course my oncologist won't even go there with me but it is another option. I have three great children and know exactly how you feel.

    Take Care and try to stay as positive as possible. Someone said to me recently as long as your alive you have the ability to survive.

  • StacyGleaso
    StacyGleaso Member Posts: 1,233
    Hope my little success story will boost your morale...

    I was a healthy 33 yr old female when I was diagnosed. Stage 4, with positive lymph nodes and liver affected. 40% of my liver was removed, and the original tumor as well. Today, I am a healthy CANCER FREE 36 yr old. Don't give up. Throw out all those ridiculous statistics. When I was given my treatment plan, I asked my surgeon and oncologist if they would suggest the same for their family members, and they said yes. I had chemo and radiation prior to surgery, and afterwards as well.

    Be strong, and don't give up. That son of yours needs you, as much as you need him to get through this. My kids were 2, 4, & 7 when I was diagnosed, and they were my driving force.

    Keep me posted,

  • kangatoo
    kangatoo Member Posts: 2,105

    Hope my little success story will boost your morale...

    I was a healthy 33 yr old female when I was diagnosed. Stage 4, with positive lymph nodes and liver affected. 40% of my liver was removed, and the original tumor as well. Today, I am a healthy CANCER FREE 36 yr old. Don't give up. Throw out all those ridiculous statistics. When I was given my treatment plan, I asked my surgeon and oncologist if they would suggest the same for their family members, and they said yes. I had chemo and radiation prior to surgery, and afterwards as well.

    Be strong, and don't give up. That son of yours needs you, as much as you need him to get through this. My kids were 2, 4, & 7 when I was diagnosed, and they were my driving force.

    Keep me posted,


    Hi--hope you are listening to these guys--sure is a lottery--but you know-in the statistic field someones in with a chance--we all hope that you are it!
    There are so many people here that have been dx'd and told many different things by many different doctors.I am sad to hear of your cancer and truly wish you the best--please do not give up!
    Many of us are told conficting things fronm surgeons, oncologists etc. etc.
    Heres a sample;
    I was told;
    I might end up with a colostomy--didn't happen
    I might end up impotent--didn't happen
    I might have/develop liver mets--didn't happen
    I may not be able to urinate--didn't happen
    I probably won't do chemo--I did--6 months.
    The surgeon said he will only take about 8 inches of colon--he took over 1/3
    He said the incision would not be too big--they cut from breastbone to pubic bone.

    This is some small example of things that one can be told and things that happen in reality.

    REFUSE to believe what you are told--things in the medical world change daily--believe and fight that you have every chance to beat this!
    our sincere best wishes--kanga n Jen
  • andreae
    andreae Member Posts: 236

    I'm so sorry about the diagnosis... My heart just bleeds for you. I was diagnosed at 20 years old in January 2003 with rectal adenocarcinoma. I was supposedly stage 3 at the time, but by September 2003, despite aggressive chemo/surgery/radiation, the cancer progressed to my lungs. I have been on chemo (Oxaliplatin and Xeloda) ever since and I'm looking forward to thoracic surgery this summer. I know how much this situation sucks, but there is HOPE. My cancer hasn't progressed since September and now they are willing to try surgery. It's a long shot, but resection means a chance at cure. You have a lot to live for. I don't have a kid and I'm just aching for you. I'm already worried enough about my loved ones... I couldn't imagine having a child, but hopefully your baby will give the strength to fight. I have done extensive research (I am a McGill student and have access to a lot of material) and talked to a lot of experts. I sincerely believe we have a realistic shot. We are young and we can fight and the studies do not have any data on young people (the mean age of colorectal cancer studies is usually between 50 and 60 so the results do not necessarily generalize to our age group). I have to get to class, but I would absolutely love to hear from you. Briefly though, talk to your doctor about the ASCO presentations (presented in New Orleans from the 5th-8th of June), ask him/her about Erbitux, Avastin, Oxaliplatin, Iritinocan, Xeloda (extremely convenient and studies have shown efficacy) more surgery, radiation, radiofrequency ablation. Is your tumor resectable? What chemo are you presently on? Is your doctor committed to you? Is he willing to take it all the way? Lots to say, so little time! I promise I'll be in touch, but keep us posted and come for support. Great group of people here, and support is so essential.

    Lots of love, hugs and positive thoughts,
  • andreae
    andreae Member Posts: 236

    I'm back and wanted to finish my thought. I'm sorry if I'm giving too much info.. Pay me no mind if you don't want to, but my heart goes out to you and I just thought I would share some tips that have kept me alive. My old oncologist, upon discovering the mets. in my lungs in September, wanted to postpone treatment until after Christmas so I could have, and I quote, "a good holiday". I hauled **** to a new doctor. I adore my new oncologist, but I stay on top of everything, my bloods, my CEA levels, my CT scans, and I push and push and push. I live in Canada and our medical resources can be limited, so I paid for a PET scan (have you had one done?), MRIs and CTs. My philosophy is that you have to be willing to be aggressive and subject yourself to a lot - but if you do the latter, you can survive. Of course, quality of life is also important to keep in mind. So I'm careful to balance both. I don't want to be a live vegetable, but so long as I can continue to live relatively normally, I'm not giving up. Look how many drugs have come up lately... It's simply incredible... And , colorectal being the number two cancer, well there is a big target market and pharmaceutical companies are willing to invest the time, money and research into developing new drugs. More drugs equal more time. I view my cancer as a chronic condition. I know I might have to undergo several years of different therapies
    to keep me going till they find the cure but it's well worth it. Sorry if I'm overwhelming, I just get so enraged when I hear of doctors adhering to a "prolonging" approach, insinuating that death is inevitable. Quite frankly, they can kiss my stoma, he, he.

    Hopefully, some of my ramblings instilled some hope and offered some usable info.. Again, please don't hesitate to post.

  • Fitlisa
    Fitlisa Member Posts: 99
    I am almost at a loss for words...when I read your and Andreae's stories I cried. I wish the healthy people out there who chronically complain about nothing could walk just one hour in either of the shoes of you two.

    I am 42 and diagnosed Stage III in May, 2004. I have no children but am a newlywed, married just 6 months. My heart is sooo going out to you..you need to not give up. I am fighting this with every fibre of my being...you are so young and have your entire life ahead of you (which is what I think of my own life also)...read, talk, ask, speak up, get all the info you can...draw strengh from anywhere you can, including here on this board...we are all in the same boat, therefore we are all uniquely qualified to help each other.

    I dont know what else to say...

  • 2bhealed
    2bhealed Member Posts: 2,064
    Hello kinsey,

    So sorry to hear about your dx. My sister also had the rare adenocarcinoma of the small intestine with no family history. Had the doctors called it colon cancer just once I may not be where I am today (on the cancer survivors network cuz I would have gone for regular colonoscopies....but that's another story).

    So since you have been told there is really nothing that can be done take that as your ticket to freedom! RESEARCH your alternative options. There are many many viable treatments that do not include chemo that have been successful. You will not hear about them from your onc because it is on the "other side of the fence" where their pocketbooks do not reach.

    First of all get off of all "whites"...sugar, flour, grains etc. If you drink, quit. If you live on fast food, stop. If they serve you donuts at your chemo treatments, decline. Cancer feeds on sugar so you want to starve the cancer and feed your immune system.

    There are tons of wonderful books on the subject but it can be confusing. A fabulous book to start with is my personal favorite:

    Beating Cancer with Nutrition by Patrick Quillin.

    A Cancer Battle Plan by Anne Frahm
    A Cancer Battle Plan Sourcebook by David Frahm

    When Hope Never Dies by Marlene McKenna

    The Cancer Prevention Diet by Michio Kushi

    Prescription for Nutritional Healing by Balch and Balch

    Questioning Chemo by Dr. Ralph Moss

    This is just a starting point if you seriously want to find a way to heal your cancer.

    there are also websites:


    Personally I have only used alternatives to heal my cancer of the sigmoid colon....Stage III lymph pos no mets. Have been cancer free for almost 3 years (in August). I was dx'ed at 39 and have 5 kids. We all have reasons to live and feel we are way too young to be checking out of life. My heart goes out to you especially because of your tender age. It just isn't fair. At all. It sucks.

    But please please know that you DO have treatment options. Go to your local natural foods store or co-op and pick up a copy of Alternative Medicine Magazine and there are bunches of legitimate cancer treatment centers for you to go to.

    Fortunately my oncologist is supportive (he was dx'ed with colon cancer last feb) and is curious about my holistic approach. He even read all the books on the list I gave him when I found out about his illness. (his wife found the list and bought all the books!!) :-)

    Please keep us posted on your prognosis. The semi-colons rock!

    peace, emily who is happy to share her protocol with any interested parties
  • jana11
    jana11 Member Posts: 705
    We are all there with you. Like the others, I am so sorry you have this. Don't loose hope - find another doctor, or tell the one you have that response is not satisfactory!

    The major cancer centers are more aggressive, but getting there can cost money... Where do you live? The major centers are in: NY, Boston, Houston, with some at Duke and I think in LA. Check the internet.

    I am now 34 and have been battling cancer for almost 2 yrs. I had ZERO risk factors, but the cancer doesn't care. I just got a lung met and am starting chemo this weekend.

    We feel your pain. Think about what activities make you happy and give you strength - try to increase your positive energy. I am a doctor, but think that alternative medicines that increase your inner power are great. Find what helps you. I also have changed my diet to healthier foods. More soy has been shown to help with prostate cancer, but I am willing to try.

    If your chemo stops working, they can changes the medicines.... and research is discovering new ones. What agents are you on?

    The younger and fewer risk factors you have, typically the more aggressive the cancer - more aggressive cancers respond to chemo more!!!

    Lance Armstrong had about a 1% chance of cure - and he's OK. (His book is very inspirational).

    Let your doctors heal your body (make sure they are doing what you want), and you concentrate on healing your mind and spirit - it helps sooo much. I wish you all the best.

    Keep us posted. jana
  • Patteee
    Patteee Member Posts: 945
    small bowel cancer thread
    bumping this up