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Thread: Worried it will come back...

  1. #1

    Worried it will come back...

    Hello all,
    Please see my introduction to shorten what I need to say here.

    I am in remission after a long battle with colon cancer. During my last bout with it I had a colostomy for what seemed like forever. I really got to hate the &$%@ thing. (I really feel for those of you who have one).

    I am VERY lucky I was able to get rid of the colostomy (just barely) and if the cancer returns I am told it will be permanent. I don't have much colon
    remaining.

    My problem is I am worrying myself to death of having to need a colostomy again, some day, and I don't think I could live with another one (I think I would totally give up at that point, or worse). The multiple surgeries (not to mention the chemo) was really horrible and that worries me a whole lot too.

    Question. How do you deal with the fear???

    Thanks for any suggestions.

    I am very happy my friends directed me to this forum (they said you were a really a nice bunch of guys and gals).

  2. #2
    Moderator Top User
    Join Date
    Mar 2008
    Location
    Houston, Texas
    Posts
    592
    I just take it one day at a time and enjoy the good days.

    And this is true of every single person on this Earth- nothing last forever, so everyone should enjoy the time they have left on this Earth. Every single person has a last day on this Earth, and most of us have no control over that. It will happen when it happens. Worrying about it will not change things.

    So enjoy each and every day. Don't worry about the "what ifs" or what might happen. Live each day and make the most of it.

    As for your health, adopt an anti-cancer diet, exercise and get regular scans.

    When one gets cancer I don't think one is ever really free from it, even when in remission. It tends to stalk us over our shoulder. For some, it comes back... for others it doesn't. Worrying about it will not change that.

    Try not to worry. Worrying does not change things and may actually be bad for your immune system. Stay positive and take it one day at a time.

    Our life is going to do whatever it will do whether we worry or not. We can either be miserable, or we can enjoy what we have. It is our choice how we spend our time. Our state of mind is up to us.
    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

  3. #3
    Senior User swisecar's Avatar
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    Worry is an interest payment on a future debt you may not owe.

    That said, I see a therapist at the Wellness Community. The program is free and there are social, nutritional, and other programs as well. Your local American Cancer Society office should have information about similar offerings in your community.

    I also keep a journal, just to get it all out. Recurance is a fear that I face. I'm afraid sometimes, and that's ok. I acknowledge my fear or other feeling by writting it down. I then move on by doing something that brings me joy. It sounds silly and simple, but I've had good results.
    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

  4. #4
    Top User
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    Posts
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    HI WILL,

    Its natural to worry, But worry can not change a thing,, Live your life one day at a time and only cross the bridges when you come to them.

    Get the best out of the day and try and laugh as much as you can, as that sets off endorphines which builds the immnune system...

    Grasp life and go and live it and go and out and do what you like best.

    GOD BLESS YOU AND BEST WISHES ...ROB

  5. #5
    Regular User
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    Oct 2009
    Posts
    34
    Hopefully the cancer doesn't come back.... we all will be praying for you.

    As far as the possibility of having a permanent ostomy..... I have a permanent ostomy now for a year. I agree, at first it's difficult to live with. You have a ton of things running through your mind (will I leak in public, can people see it through my clothes, will i smell like poop). Eventually you become used to having one. Though it takes a while. Finding the right bag to fit you makes all the difference. It is always better to go in a bag than to be placed in a box.

    Do everything you can to beat the cancer. Constantly worrying about cancer does nothing. The fear will just consume you. Only when you are able to release from the fear will you truly live. This is cancer's true gift to us.... a new appreciation for life.

    But you are going to be cancer free so you won't have to worry about any of this.
    1/15/09 - Colonscopy Biopsy (Stage IIIc Colon Cancer)
    1/26/09 - FOLFOX - 5-FU, leucovorin, oxaliplatin, avastin
    5/5/09 - Removal of Stage IIIC Colon Cancer Tumor & Permanent Ostomy. 13 lymph nodes removed 12 positive for cancer.
    8/6/09 - Started 6 weeks radiation w/5-FU pump
    9/21/09 - FOLFOX regimen - 5-FU, leucovorin & oxaliplatin.
    10/12/09 - FOLFIRI regimen - 5-FU, leucovorin & irinotecan.
    05/07/10 - Stage IV cancer in bones and lymph nodes.

    Age Diagnosed 34. Current Age: 35

  6. #6
    Super Moderator Top User sheila's Avatar
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    REB-well put! jcondit also Ill keep you in my prayers that it will not return and if it does that its something you can deal with. one day at a time. as mom would say-one minute at a time
    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.

  7. #7
    Top User joepet's Avatar
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    Every time you catch yourself worrying, ask yourself "Why am I worrying?" If it's about something important that you need to do, try and hash out exactly what it is right then and there. Much more often though, you find yourself going over and over things that aren't going to change no matter what you do. There is absolutely nothing good that can come of that...no study has ever shown that consistent worry reduces our chances of illness.

    Unfortunately, we humans are wired so as to not think logically when we have idle time. Fortunately, it is also impossible for us to be mentally engaged in more than one thing at a time. So it is possible for you to crowd out your worry by doing something else. Not something like a walk in the park or vegging out in front of the TV...you can do those things with your brain on autopilot, and you'll still have room for pointless worry. Put together a thousand piece jigsaw puzzle, read a book, have a conversation with someone about something other than what you're worrying about...whatever keeps your mind elsewhere. Do it even if you don't want to do it. A busy person doesn't have time for worry.

    If you are diligent and keep at it long enough, soon you'll be over the worry habit, and be able to keep living all the extra life you have earned.
    My Story: http://cancerforums.net/viewtopic.php?t=11396
    Diffuse Large B cell Lymphoma
    Stage 1AE (localized in colon)
    Began six cycles of R chop 21 3rd Dec 2008
    Finished R chop 21 Apr 2009
    Complete remission as of May 2009
    Confirmed April 2010

  8. #8
    Top User topazil's Avatar
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    I understand your posting and I sympathize. I am not and will never be at the level you are at, wondering if it will come back as for me there is never any "Going away", it might slow, it might pause in it's relentless drive through my body, it might even stop for a time but it will always be there, my very own "dark passenger" (Reference: TV series Dexter but I am not a serial killer (grins) So I have my own sets of worries I go through although my oncologist is trying to move me from "I am going to die" to "I am going to die, just not right now" attitude (grins)

    Everyone here is so very supportive and as you see has so much to offer. I know it is so hard not to worry and to wait for the other shoe to drop but if you do that, then you will miss out on the life around you. Have fun, do things to take your mind off the anxiety, whatever it is you like to do, enjoy life. (((((Hugs))))

    You have been given some really good suggestions Will and I hope they help, god bless and keep you and you are in 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

  9. #9
    Regular User
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    I have not been diagnosed with this monster, but I have been through a lot of struggle in life. One strange incident in my life brought me to this forum. Fear, anger, depression, feeling of uncertainty has all been part of my life.

    Sometime back I started reading OSHO and his articles helped me a lot. Helped me look at life from different perspective, fight my fears, worries etc.

    If any of you are interested you can go to www.oshoworld.com and read his ebooks.

    May God bless you all.

    My prayers and thoughts are with all of you.

  10. #10

    Thanks!

    Hello again,

    Those are some awesome suggestions! I really feel I was directed to the right forums, and I am very grateful.

    What has been helping me the most is keeping my mind busy.

    Several of the other residents here at the health care facility are still very active and they even host things like knitting, sewing, and quilt making groups for others in the surrounding community (an few hours a week or so). They all seem to have a great time.

    I am working on plans for hosting a weekly session myself on getting others started with some very basic electronics like building "crystal radios". My friends are going to help me with setting things up here (the parts are not very expensive). We won't be doing any soldering or working with dangerous voltages, so hopefully it will be happy and relaxing for everyone.

    Do you think I am headed in the right direction with this?

    Thanks again, and God bless all of you!

 

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