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Thread: 27 Years old Just diagnosed

  1. #1

    27 Years old Just diagnosed

    Hi all!

    I am a 27 year old woman who has just recently (I mean days ago) been diagnosed with colon cancer.

    I still dont know much, but I thought I would share my story with the hopes that it may help even just one person - and also so I might find some comfort in the words and experience of all of you.

    It started about two years ago. I noticed a change in my bowel habits. Intermittent diahrea and constipation, occasional blood in my stool, and gas. My mother's brother was only 26 when he was diagnosed with colon cancer, my grandfather died at 39, so immediately my mind went to cancer.

    After a visit to the clinic, my mind was eased when the doctor told me my chances were so very slim for colon cancer, and to not be worried. Considering my family history, and the fact that his own father was diagnosed at a young age, he assured me that he would get some tests in order, but that more than likely everything was fine. Weeks passed, my symptoms diminished, and I found myself thinking I had "textbook diagnosed" myself, and the doc knew so he didn't bother with the tests. I eventually forced myself to stop thinking about it.

    I became pregnant soon after, and had constant stomach pains my entire pregnancy. I told my OB-GYN, but she sluffed it off as pregnancy uncomfortableness. I had 3 other children and never remembered that pain, but hey .. that's why the doctors make the big money right? We put our trust in them, and so once again I ignored my body.

    I gave birth to a beautiful girl last Feb. By the summer, I felt better once again.

    Then in January of this year, my symptoms returned. By February, there was blood in my stool each time I passed, though it was only noticable because I was looking out for it. A little on the toilet paper, a little in the stool. By March, it hurt so bad to go I actually cringed each time I had the urge.

    I kept getting this feeling in my bones, this cold achy feeling that told me something just wasn't right. I began googling and reading and asking about colon cancer. The more I did, the more I knew. Now, I was afraid to go to the doctors.

    To try to make my long story short <<<roll>>> A week and a half ago, I went to the bathroom and there was no mistaking the blood. It was clearly evident. I told myself that was it. I was going to the emerg, and I wasn't leaving until a colonoscopy was in order.

    I was in emerg for only a half hour before the Chief of Medicine was examining me. He also reassured me, told me my chances were a little higher because of my family history, but that was still so very low for my age. After a quick examination, he had me booked for a colonoscopy two days later.

    He removed 3 polyps which he said not to worry about, but found a 3cm mass in my sigmoid colon (I think that's it? Geez I don't even know the correct terminology yet, please bear with me) He said he took a biopsy, and he put his hand on my leg while he told me he would have to take most of my colon. I'm am so very grateful I will not have to have a full colestomy.

    I'm still in shock. I have many questions. I haven't even had a catscan, or the results of the biopsy ... How can he make the diagnosis just by looking? How can he be so sure that surgery is the answer without really knowing what we're dealing with? Does this mean he thinks the cancer is in a higher stage?

    I'm on call for a catscan right now, and I'm sorta numb. Positive, but numb. I would appreciate any help or advice you all can give me .. and I want anyone out there who's body doesn't feel right to listen to your gut! Don't stop until you get the answers you need.

  2. #2
    Senior User swisecar's Avatar
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    I had no family history, but I also ignored symptoms for months. I also went to my doctor multiple times and was diagnosed with irritable bowel syndrome. I requested a colonoscopy, but my doc talked me out of it because of cost, ect and said let's just wait and see. 6 months later, I was in the emergency room with alternating constipation and diarrhea with horrible pain. Three days later, after nothing they did in the hospital got my bowels to move, I got a colonoscopy. The next morning I had surgery . . . my tumor was blocking passage which had led to impaction.

    As for your questions: Write them down and leave room to write notes during your next visit with your doctor. Good doctors appreciate prepared patients.

    The polyps can be examined and used for cancer by a pathologist.

    I would get a second opinion before surgery.

    Ask for an estimate of how much of your colon needs to be removed, which parts, and if resection will be possible.

    How much of the colon that is removed may depend on the proliferation of the polyps.

    Were there additional polyps to the 3 that were removed? Are there any other smaller tumors in your bowel?

    With you're family history, I would also ask about genetic testing. This can potentially help an oncologist with treatment strategies because the presence of certain abnormalities respond differently to chemotherapy.

    I don't know your work situation, but ask when you can return to work after surgery. Be prepared for time out of work. How long will depend on what kind of job you have, and how you recover.

    If you need to be out of work for a significant amount of time, then you should be aware of FMLA (Family Medical Leave Act). You may want to use sick/leave time you have banked while getting FMLA filed. I would start looking into this NOW.

    I don't know the ages of your children, but you may need help with childcare as well. (There is no way I could have cared for myself completely after surgery. I can't imagine caring for one child. I had to move in with my parents for 3 weeks after I was released from the hospital.)

    If you are going to have chemotherapy, then ask for a port-a-cath. A port is a catheter that is under the skin and connected to a vein. You can have blood drawn and receive treatment through the port rather than searching for viable veins all the time.

    Since you'll be on pain meds after surgery I would suggest that you have someone with you as often as possible. This is both for your care and so that when the doc visits, someone will be there to remember what is said. I also kept a pad of paper which I handed to my docs so they could write important points and I could have fun decoding them later

    After surgery, questions will be:

    What stage is the tumor?
    When is my follow up with the surgeon?
    When will I get a consult with an oncologist? (you might see one in the hospital)
    What are the results of my genetic testing and what do they mean?
    Do I need chemotherapy and/or radiation?
    When will I start chemotherapy?
    Will I be able to work during chemotherapy?

    That's plenty for now . . . maybe too much

    From one young one to another, I wish you and your family all the best.
    May 1988 acute lymphoblastic leukemia (2 yrs chemo & radiation)
    Sept 2009 papillary thyroid cancer (thyroid removal & radioactive iodine)
    Sept 2009 colon cancer stage IIIC (removal of sigmoid colon & resection)
    Oct 2009-May 2010 FOLFOX6
    July 2010 stage IV colon cancer, irinotecan & avastin
    Dec 2010-July 2011 avastin maintenance
    Sept 2011 tumor removal involving small bowel resections
    Nov 2011-April 2012 resume irinotecan
    May 29 2012 begin radiation treatments 15 total
    current age: 28

  3. #3
    Top User topazil's Avatar
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    swisecar just gave you the best information you could have gotten (smiles) I can't think of a thing to add except to say I am sorry you have to join "the club" but I am glad you found this forum as you will find no more wonderful people here willing to help you in any way possible. ((((((((((((hugs))))))))))))) and you are added to my thoughts and prayers.
    Total hysterectomy July 23 2008, mass in colon.
    Colonoscopy Aug 2008
    Rigid Sigmoidoscopy with a laparoscopic-assisted partial colectemy with enbloc small bowel resection Sep 2008
    Diagnosed: Stage IV Colon Cancer mets to lungs and liver. (T3,N2,M1,G2) KRAS Mutation
    Started chemotherapy: 09/14/09 Folfox-6/Avastin then Camptosar/Avastin & last Folfox-6/Avastin
    On Hospice, started 11/12/10
    Last PET scan: Oct 12th
    Most recent CEA Level: 09/27/10: 696.7 up from 08/16/10: 284.8

  4. #4
    Thank you guys so much for responding.

    The polyps that were removed didn't seem to cause him too much concern. It was the mass in my sigmoid colon that made him diagnose me.

    I'm still not sure how much of my colon they are going to take, his exact words were, "...most of your colon." Of course my first question was, "Will I need a bag." After he said no, I sorta drifted off into my own thoughts, and honestly can't remember much else of what he said. It was just so shocking.

    I am so happy to have found this forum. Thanks for all of the helpful things you have written. I will be sure to ask all the questions I can when I go back in for my catscan.


  5. #5
    Super Moderator Top User sheila's Avatar
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    first off swisecar covered it well(good job!) in the meantime our thoughts and prayers are with you as your waiting to find out what you need to do. a second opinion wouldnt hurt but that all depends on what they said to you besides that statement and if you trust the doctor your seeing. please keep us posted and try to stay as positive as possible.things could always be worse than whatever you need to deal with.
    MOMS Journey
    April06- Emergencysurgery,exploratory,10units blood,largetumor and 10inches of colon removed,temp.colostomy.diagnosed stage IV colon.
    oxyplatin,5fu
    Oct06-radiation,surgery,several lymphs,cervix,1 ovary,fallopian,40% remaining colon,large tumor to adipose tissue,appendix,gallbladder removed.permant colostomy/iliostomy
    oxyplatin,transfusion.
    April 07-xeloda-overdose
    surgery-1/3liver,partial diaphra, removed clipped and questionable spots oblated.
    port-port rejection-port removed 1week.
    picc line,5fu,oxyplatin,camptosar.
    Oct-08-surgery-remaining ovary engulfed in tumor,partial bone scrape.
    transfusion central line TPN 1 month.
    oct-09-surgery tumor ,colon and jejuneum removed.
    xeloda reduced. severe dehydration,heart attack.
    april10-remission-avistan
    oct-10-erbitux,camptosar
    Jan-11-5fu
    mar-11 return to original site-oxyplatin,5fu
    Aug-11-erbitux,camptosar.
    dec-28-blood transfusion
    dec-30-back to chemo erbitux camtosar
    Jan-16 injections neulasta and aranesp
    feb16-transfusion
    feb 21-Tumor found stomach,liver, and liver "hot spots" inflamed lymph in rt ureter in kidney causing obstruction-surgery schedualed Mar 16.
    march 16/12-no more kidney obstruction not lymph ...dehydration is causing blockage, two litters blood for anemia, stomach liver tumor small-med,abalation, 1 hidden tumor deep in muscle mass on side flank(hid from scans) -gone!
    june/15/12-blood transfusion
    starting a regimine of celebrex
    aug/16/12-blood transfusion
    aug/30-12 discontinued celebrex -failure one kidney. needed to see urologist
    sept/10-12-good urologist report one kidney functioning well for now.
    oct/23/12-chemo pill Stivarga(regorafenib)
    Nov/22/12-blood transfusion
    dec/18/12-blood transfusion chemo pill dosage cut back to 1 pill.
    Feb/21/13 neulasta injection
    Feb/22/13-blood transfusion. still taking stivarga.
    mar/20/13-arenespt injection rehydration and magnesium IV
    mar/21/13-acute renal failure-kidney infection
    april/1/13.-recovery from 4 day coma infection cleared/4 units blood/ off stivarga/starting rehab therapy,
    swollen hand no apparent reason black spots in vision off and on. both cleared up.
    may/22/13-home oxycodone for pain shoulder neck arm
    june/1/13 pain subsided off oxy onto aleve
    june/09/13-pain back off aleve on vicodin
    june 10/13-cancer in back/neck- starting radiation for arm neck and shoulder pain.
    june24/13-last day of radiation-on steroids
    july1/13-swollen legs and feet-lasix off steroids still on vicodin and xanax
    july 23/13 vicodin cut in half blood transfusion.
    sept/6/13-off all pain meds since late aug
    scan results fracture in spine mid back
    sept/12/13-spine healing on its own,weaning off steroids, no visible tumors.
    nov/7/13-edema both legs and one arm on lasix since oct.
    nov/21/13- leg edema subsiding still alot in one arm- she is talking but keeps her eyes closed. achy but no major pain. nurse and aide to visit once a week schedualed. having trouble standing.
    nov/24/13-sadly but peacefully moms cancer journey is at an end, she will start her new spiritual journey together hand in hand with dad.

  6. #6
    Moderator Top User
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    I would get a second opinion before they removed most of my colon.

    For me, they just removed a few inches of my colon- the tumor and a few inches on each side. Since then, my colon has been clear.

    I am not sure why on some people they remove most or all of the colon when there is one tumor, and wht on some they don't. Perhaps it is based on the number of lymph nodes effected by the cancer?
    10/01/07 - Removal of Colon Cancer Tumor & Temporary Colostomy
    11-07-07 to 04-09-08 FOLFOX and Avastin. 04-28-08 Colostomy Reversal
    June 2009 3 Tumors in the Peritoneal tissue- FOLFIRI and ERBITUX.
    11-25-09 Tumors inactive(Oct). Finish FOLFIRI, continue ERBITUX
    Jan 2010-May 2010 FOLFIRI and ERBITUX.
    June 2010 Cancer in Liver. Nov 2010 - Oxyplatinum, Avastin and IROX
    Age Diagnosed 40. Current Age:44

  7. #7
    Senior User swisecar's Avatar
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    Knoxville, TN
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    Because of your age and family history, ask about familial adenomatous polyposis (FAP) and hereditary nonpolyposis colorectal cancer (HNPCC). Both are characterized by family history or colon cancer, young age of diagnosis in some or all family members, and also diagnosis of other related cancers. It may be useful to obtain your uncle's and grandfather's medical records. This information will also benefit your children in the future.

    I second REB in asking for a second opinion about removing most of your colon. I would definately have the doctor explain to me exactly what the surgical plan is and WHY this is the best plan.
    May 1988 acute lymphoblastic leukemia (2 yrs chemo & radiation)
    Sept 2009 papillary thyroid cancer (thyroid removal & radioactive iodine)
    Sept 2009 colon cancer stage IIIC (removal of sigmoid colon & resection)
    Oct 2009-May 2010 FOLFOX6
    July 2010 stage IV colon cancer, irinotecan & avastin
    Dec 2010-July 2011 avastin maintenance
    Sept 2011 tumor removal involving small bowel resections
    Nov 2011-April 2012 resume irinotecan
    May 29 2012 begin radiation treatments 15 total
    current age: 28

  8. #8
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    Bangalore, India
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    5

    Look after yourself

    Hi,

    You're doing all the right things medically and you're getting lots of good advice from others on the forum too.

    My concern is how you (and the people around you) are dealing with it emotionally and psychologically.

    The early days are always turbulent ... I know, because I went through a similar situation soon after I turned 40 ... but then things will settle down and you will be able to draw upon a whole set of resources you didn't know you had!

    You'll be learning lots of new medical jargon and making friends with hi-tech equipment in various hospitals and clinics; the only piece of advice I can offer is to remember that you're a human being first ... don't let anyone take that away from you.

    Stay strong and stay open to what life is revealing, at every moment.

    All the best!
    Vijay (4 is a colon cancer survivor since 2001 and Nilima (43) is his wife and caregiver. We have experienced both conventional and complementary therapies, including yoga, meditation, Chinese medicine, Ayurvedic diet and mind-body-energy medicine on the road back to health. We want to share with other cancer patients and their families, our distilled learnings of 9 years. And through more such interactions, we hope to continue our own healing

  9. #9
    Thank you guys for all of your help.

    At this point, I am still unsure of the stage or grade. I had my catscan on Thursday of this week, and I am now awaiting the results.

    Emotionally, I think I am numb. Physically, on a scale from 1-10 my pain ranges certain days from a 6-8. Tolerable, but so very painful. It's like menstral cramps intensified by a hundred. I called the office on Friday hoping he might be able to prescribe something for the pain, but his office is closed until Tuesday because of the long weekend.

    He cited the reason as removing most of my colon because of my family history and the way the tumor appeared during the colonoscopy. His exact words to me were, "If we don't do surgery, this will come back." How he knows that I have no idea. Though I have many questions, I am putting my faith in him and following his direction. He is the Chief of Medicine at the hospital and has a very good reputation.

    I guess now the next step is awaiting the results of my catscan.

    I will keep you all posted on my progress, and I thank you all for your support and knowledge.

  10. #10
    Super Moderator Top User sheila's Avatar
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    bethel park pa
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    Ill say a prayer for you waiting is difficult but we'll be here for you no matter what. think positive and hang in there
    MOMS Journey
    April06- Emergencysurgery,exploratory,10units blood,largetumor and 10inches of colon removed,temp.colostomy.diagnosed stage IV colon.
    oxyplatin,5fu
    Oct06-radiation,surgery,several lymphs,cervix,1 ovary,fallopian,40% remaining colon,large tumor to adipose tissue,appendix,gallbladder removed.permant colostomy/iliostomy
    oxyplatin,transfusion.
    April 07-xeloda-overdose
    surgery-1/3liver,partial diaphra, removed clipped and questionable spots oblated.
    port-port rejection-port removed 1week.
    picc line,5fu,oxyplatin,camptosar.
    Oct-08-surgery-remaining ovary engulfed in tumor,partial bone scrape.
    transfusion central line TPN 1 month.
    oct-09-surgery tumor ,colon and jejuneum removed.
    xeloda reduced. severe dehydration,heart attack.
    april10-remission-avistan
    oct-10-erbitux,camptosar
    Jan-11-5fu
    mar-11 return to original site-oxyplatin,5fu
    Aug-11-erbitux,camptosar.
    dec-28-blood transfusion
    dec-30-back to chemo erbitux camtosar
    Jan-16 injections neulasta and aranesp
    feb16-transfusion
    feb 21-Tumor found stomach,liver, and liver "hot spots" inflamed lymph in rt ureter in kidney causing obstruction-surgery schedualed Mar 16.
    march 16/12-no more kidney obstruction not lymph ...dehydration is causing blockage, two litters blood for anemia, stomach liver tumor small-med,abalation, 1 hidden tumor deep in muscle mass on side flank(hid from scans) -gone!
    june/15/12-blood transfusion
    starting a regimine of celebrex
    aug/16/12-blood transfusion
    aug/30-12 discontinued celebrex -failure one kidney. needed to see urologist
    sept/10-12-good urologist report one kidney functioning well for now.
    oct/23/12-chemo pill Stivarga(regorafenib)
    Nov/22/12-blood transfusion
    dec/18/12-blood transfusion chemo pill dosage cut back to 1 pill.
    Feb/21/13 neulasta injection
    Feb/22/13-blood transfusion. still taking stivarga.
    mar/20/13-arenespt injection rehydration and magnesium IV
    mar/21/13-acute renal failure-kidney infection
    april/1/13.-recovery from 4 day coma infection cleared/4 units blood/ off stivarga/starting rehab therapy,
    swollen hand no apparent reason black spots in vision off and on. both cleared up.
    may/22/13-home oxycodone for pain shoulder neck arm
    june/1/13 pain subsided off oxy onto aleve
    june/09/13-pain back off aleve on vicodin
    june 10/13-cancer in back/neck- starting radiation for arm neck and shoulder pain.
    june24/13-last day of radiation-on steroids
    july1/13-swollen legs and feet-lasix off steroids still on vicodin and xanax
    july 23/13 vicodin cut in half blood transfusion.
    sept/6/13-off all pain meds since late aug
    scan results fracture in spine mid back
    sept/12/13-spine healing on its own,weaning off steroids, no visible tumors.
    nov/7/13-edema both legs and one arm on lasix since oct.
    nov/21/13- leg edema subsiding still alot in one arm- she is talking but keeps her eyes closed. achy but no major pain. nurse and aide to visit once a week schedualed. having trouble standing.
    nov/24/13-sadly but peacefully moms cancer journey is at an end, she will start her new spiritual journey together hand in hand with dad.

  11. #11
    Regular User
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    Mumbai, India
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    Hi iceis,
    As mentioned earlier by swisecar, your doctor is most probably suspecting HNPCC in your case, and has hence advised to remove the whole of colon. Just few things I would wish to know:
    - What was the biopsy result of those three polyps, and the sigmoid mass.
    - How many polyps were there in colon, only three, or more. If more, where are they scattered.
    - CTScan result.
    - Have they advised for Serum CEA

    I am sorry I am burdening you with questions, but these help in planning

    Colon cancer prognosis has changed by leaps and bounds over last 20 years, and we have good options to tackle colon cancer. So dont worry, we can fight it. Just be positive

  12. #12
    Thank you.

    I will keep your questions in mind for my next trip. You have all given me so much to think about. It seems like it has been forever since he told me, and I'm still waiting. I hate this waiting game.

    My stomach has been hurting really bad the past two days.

    Does anyone else get(or ever experienced) a really bad pain when you try to urinate? This never used to happen, but the past two days everytime I try to pee I get a sharp pain in my left side, and it hurts so bad I have to suck in air. I've also been feeling so nauseus.

    I can't wait to feel "normal" again.

  13. #13
    Moderator Top User
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    Houston, Texas
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    I would still be hesitant about removing the colon. As long as it is monitored, they could always remove anything that shows up in future scans or colonoscopy. If it showed up a second time, then I would consider removing it all.

    I would go with whatever your doctor says, but I would get a second opinion before I had them do the surgery.
    10/01/07 - Removal of Colon Cancer Tumor & Temporary Colostomy
    11-07-07 to 04-09-08 FOLFOX and Avastin. 04-28-08 Colostomy Reversal
    June 2009 3 Tumors in the Peritoneal tissue- FOLFIRI and ERBITUX.
    11-25-09 Tumors inactive(Oct). Finish FOLFIRI, continue ERBITUX
    Jan 2010-May 2010 FOLFIRI and ERBITUX.
    June 2010 Cancer in Liver. Nov 2010 - Oxyplatinum, Avastin and IROX
    Age Diagnosed 40. Current Age:44

  14. #14
    Super Moderator Top User sheila's Avatar
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    Jul 2008
    Location
    bethel park pa
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    6,634
    The problem your experiencing with the pain and urinating may all be tied in with your main problem, but then again it may be a kidney problem or a simple bladder infection working on you(till you see your doctor- drink plenty of water to flush your kidneys and stay away from things such as alcohol) let us know what your doctor says . for your questions, write them down while theyre fresh on your mind and with the limited time you have to discuss(you need to get the questions answered) I write a question skip a space so I can jot in his/her answers soon as I leave the building or take notes do that with each Q. and hand the doctor the list-it gets to the point and takes less of both of your time without getting sidetracked. You will both be satisfied. hang in there
    MOMS Journey
    April06- Emergencysurgery,exploratory,10units blood,largetumor and 10inches of colon removed,temp.colostomy.diagnosed stage IV colon.
    oxyplatin,5fu
    Oct06-radiation,surgery,several lymphs,cervix,1 ovary,fallopian,40% remaining colon,large tumor to adipose tissue,appendix,gallbladder removed.permant colostomy/iliostomy
    oxyplatin,transfusion.
    April 07-xeloda-overdose
    surgery-1/3liver,partial diaphra, removed clipped and questionable spots oblated.
    port-port rejection-port removed 1week.
    picc line,5fu,oxyplatin,camptosar.
    Oct-08-surgery-remaining ovary engulfed in tumor,partial bone scrape.
    transfusion central line TPN 1 month.
    oct-09-surgery tumor ,colon and jejuneum removed.
    xeloda reduced. severe dehydration,heart attack.
    april10-remission-avistan
    oct-10-erbitux,camptosar
    Jan-11-5fu
    mar-11 return to original site-oxyplatin,5fu
    Aug-11-erbitux,camptosar.
    dec-28-blood transfusion
    dec-30-back to chemo erbitux camtosar
    Jan-16 injections neulasta and aranesp
    feb16-transfusion
    feb 21-Tumor found stomach,liver, and liver "hot spots" inflamed lymph in rt ureter in kidney causing obstruction-surgery schedualed Mar 16.
    march 16/12-no more kidney obstruction not lymph ...dehydration is causing blockage, two litters blood for anemia, stomach liver tumor small-med,abalation, 1 hidden tumor deep in muscle mass on side flank(hid from scans) -gone!
    june/15/12-blood transfusion
    starting a regimine of celebrex
    aug/16/12-blood transfusion
    aug/30-12 discontinued celebrex -failure one kidney. needed to see urologist
    sept/10-12-good urologist report one kidney functioning well for now.
    oct/23/12-chemo pill Stivarga(regorafenib)
    Nov/22/12-blood transfusion
    dec/18/12-blood transfusion chemo pill dosage cut back to 1 pill.
    Feb/21/13 neulasta injection
    Feb/22/13-blood transfusion. still taking stivarga.
    mar/20/13-arenespt injection rehydration and magnesium IV
    mar/21/13-acute renal failure-kidney infection
    april/1/13.-recovery from 4 day coma infection cleared/4 units blood/ off stivarga/starting rehab therapy,
    swollen hand no apparent reason black spots in vision off and on. both cleared up.
    may/22/13-home oxycodone for pain shoulder neck arm
    june/1/13 pain subsided off oxy onto aleve
    june/09/13-pain back off aleve on vicodin
    june 10/13-cancer in back/neck- starting radiation for arm neck and shoulder pain.
    june24/13-last day of radiation-on steroids
    july1/13-swollen legs and feet-lasix off steroids still on vicodin and xanax
    july 23/13 vicodin cut in half blood transfusion.
    sept/6/13-off all pain meds since late aug
    scan results fracture in spine mid back
    sept/12/13-spine healing on its own,weaning off steroids, no visible tumors.
    nov/7/13-edema both legs and one arm on lasix since oct.
    nov/21/13- leg edema subsiding still alot in one arm- she is talking but keeps her eyes closed. achy but no major pain. nurse and aide to visit once a week schedualed. having trouble standing.
    nov/24/13-sadly but peacefully moms cancer journey is at an end, she will start her new spiritual journey together hand in hand with dad.

  15. #15
    Regular User
    Join Date
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    25
    I was dx'd May 20th, 2008- the mass in my sigmod so large I was nearly obstructed. He knew immediatley it was cc- there is just a certain look to them. It was 10 days before I got into the colorectal surgeon- he couldn't even schedule me until JULY- within 3 days I was at Mayo, all testing done in 3 days, met the surgeon and was on for a resection on June 9th. No clue at this point the stage of the cancer- the surgeon refused to speculate other than to say due to the size of the mass, more than likely stage 3 or 4. Immediate genetic testing was done- she called me late Friday to tell me it was negative- and it would have meant the difference between a resectionn and taking the entire colon out. That night my bowel obstructed, I went to the local ER, they pumped me full of morphine and transported me to Mayo, about an hour away. The entire surgery team met me and went right to work.

    Moral of my story- yes, the waiting is a nightmare- at this point if you don't have more of a definite idea of what is going on, please get an appoinmtment at a cancer center, like Mayo or a speciality hospital- where they do treat you quickly and completely.

    I ended up stage 3B and just completed 2 years cancer free.

  16. #16
    Super Moderator Top User sheila's Avatar
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    Pattysm-2 years! congratulations
    MOMS Journey
    April06- Emergencysurgery,exploratory,10units blood,largetumor and 10inches of colon removed,temp.colostomy.diagnosed stage IV colon.
    oxyplatin,5fu
    Oct06-radiation,surgery,several lymphs,cervix,1 ovary,fallopian,40% remaining colon,large tumor to adipose tissue,appendix,gallbladder removed.permant colostomy/iliostomy
    oxyplatin,transfusion.
    April 07-xeloda-overdose
    surgery-1/3liver,partial diaphra, removed clipped and questionable spots oblated.
    port-port rejection-port removed 1week.
    picc line,5fu,oxyplatin,camptosar.
    Oct-08-surgery-remaining ovary engulfed in tumor,partial bone scrape.
    transfusion central line TPN 1 month.
    oct-09-surgery tumor ,colon and jejuneum removed.
    xeloda reduced. severe dehydration,heart attack.
    april10-remission-avistan
    oct-10-erbitux,camptosar
    Jan-11-5fu
    mar-11 return to original site-oxyplatin,5fu
    Aug-11-erbitux,camptosar.
    dec-28-blood transfusion
    dec-30-back to chemo erbitux camtosar
    Jan-16 injections neulasta and aranesp
    feb16-transfusion
    feb 21-Tumor found stomach,liver, and liver "hot spots" inflamed lymph in rt ureter in kidney causing obstruction-surgery schedualed Mar 16.
    march 16/12-no more kidney obstruction not lymph ...dehydration is causing blockage, two litters blood for anemia, stomach liver tumor small-med,abalation, 1 hidden tumor deep in muscle mass on side flank(hid from scans) -gone!
    june/15/12-blood transfusion
    starting a regimine of celebrex
    aug/16/12-blood transfusion
    aug/30-12 discontinued celebrex -failure one kidney. needed to see urologist
    sept/10-12-good urologist report one kidney functioning well for now.
    oct/23/12-chemo pill Stivarga(regorafenib)
    Nov/22/12-blood transfusion
    dec/18/12-blood transfusion chemo pill dosage cut back to 1 pill.
    Feb/21/13 neulasta injection
    Feb/22/13-blood transfusion. still taking stivarga.
    mar/20/13-arenespt injection rehydration and magnesium IV
    mar/21/13-acute renal failure-kidney infection
    april/1/13.-recovery from 4 day coma infection cleared/4 units blood/ off stivarga/starting rehab therapy,
    swollen hand no apparent reason black spots in vision off and on. both cleared up.
    may/22/13-home oxycodone for pain shoulder neck arm
    june/1/13 pain subsided off oxy onto aleve
    june/09/13-pain back off aleve on vicodin
    june 10/13-cancer in back/neck- starting radiation for arm neck and shoulder pain.
    june24/13-last day of radiation-on steroids
    july1/13-swollen legs and feet-lasix off steroids still on vicodin and xanax
    july 23/13 vicodin cut in half blood transfusion.
    sept/6/13-off all pain meds since late aug
    scan results fracture in spine mid back
    sept/12/13-spine healing on its own,weaning off steroids, no visible tumors.
    nov/7/13-edema both legs and one arm on lasix since oct.
    nov/21/13- leg edema subsiding still alot in one arm- she is talking but keeps her eyes closed. achy but no major pain. nurse and aide to visit once a week schedualed. having trouble standing.
    nov/24/13-sadly but peacefully moms cancer journey is at an end, she will start her new spiritual journey together hand in hand with dad.

  17. #17
    Top User topazil's Avatar
    Join Date
    Aug 2009
    Location
    California
    Posts
    971
    I second the congratulations ((((((((hugs))))))))))
    Total hysterectomy July 23 2008, mass in colon.
    Colonoscopy Aug 2008
    Rigid Sigmoidoscopy with a laparoscopic-assisted partial colectemy with enbloc small bowel resection Sep 2008
    Diagnosed: Stage IV Colon Cancer mets to lungs and liver. (T3,N2,M1,G2) KRAS Mutation
    Started chemotherapy: 09/14/09 Folfox-6/Avastin then Camptosar/Avastin & last Folfox-6/Avastin
    On Hospice, started 11/12/10
    Last PET scan: Oct 12th
    Most recent CEA Level: 09/27/10: 696.7 up from 08/16/10: 284.8

  18. #18
    New User
    Join Date
    May 2010
    Location
    Bangalore, India
    Posts
    5
    Dear Iceis,

    In one of your posts, you said "Emotionally, I think I am numb. Physically, on a scale from 1-10 my pain ranges from 6-8."

    The emotional numbness is very common ... it is one of our coping mechanisms to deal with very difficult situations ... feeling nothing protects us from feeling too much.

    However, if this goes on for too long, then you may be blocking something and it may be a good idea to try and release it.

    For the pain, have you considered doing some breath-work or acupressure/ acupuncture?

    There are many breathing techniques that you can learn, which can moderate pain very sigificantly. Ditto for acupressure/ acupuncture.

    Please check around if you have a good yoga therapist and/or Chinese medicine practitioner in your area (ideally, who has previous experience with cancer) and they will be able to advise you.

    Breathwork can also help you in releasing emotions, so I highly recommend it.

    Cheers and all the best,

    Vijay
    Vijay (4 is a colon cancer survivor since 2001 and Nilima (43) is his wife and caregiver. We have experienced both conventional and complementary therapies, including yoga, meditation, Chinese medicine, Ayurvedic diet and mind-body-energy medicine on the road back to health. We want to share with other cancer patients and their families, our distilled learnings of 9 years. And through more such interactions, we hope to continue our own healing

  19. #19

    questions

    i have had several of these symtom for a long time and just started having bleeding and loose stool within the last years for bleeding on and off and loose stool diarrea for the 6 months and diarrea and other symtom like pain in my stomach area fatigue and vominiting trouble eating ect. for going on 3-4 years and my doctor just order three test colonescopy, sigmoidoscopy and a ultra sound of my liver though the problem are coming from my rump and stomach does this mean he think i have cancer? i was adopted so i don't know my family medical history. please let me know
    angel

  20. #20
    I was diagnosed at age 20(male)...well it was more like I had to get an emergency surgery done to remove 2/3 of my colon and afterwards diagnosed with colon cancer. I am 22 now and everything is well. My mother carries the mutated gene that causes Lynch syndrome(HNPCC), 3 out of 4 uncles also had colon cancer. I strongly suggest that you (actually almost everyone) also see's a genetics experts in their hospital. If you have hereditary syndromes such as HNPCC it is important for all your children to also be tested later on to see if they carry the gene. Genetic syndromes that cause colon cancer can cause other harms as well. My doctor and the genetic researcher told me that I will need to have my skin and stomach also examined every now and then since HNPCC is now known to cause problems in those areas, as well in female reproductive organ(not sure which parts exactly).

 
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