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grandma047
grandma047 Member Posts: 381
edited March 2014 in Colorectal Cancer #1
Hi, I'm new to this group. I had rectal cancer, stage II in July, 2003. Had colon resection, no postive lymph nodes, no spread, good margins. No further treatment recommened. It shouldn't have come back, but it did to everyone's surprise. I was diagnosed with recurrent cancer in Jan, 2004. I have taking continuous 5FU by port 5 days per week, and radiation 5 days per week, for six weeks. Just getting ready to start week 4 on Monday. I will then have 4-6 week break and surgery plus a permanent colostomy. Then 4 week break and more chemo. Don't know how much yet. Anyone have similiar cancer and treatment that can tell me what to expect. Are my chances good of beating it this time?? My CAT scans look clear. My blood work has been good, so far. Can anyone tell me what to expect from the colostomy and about how long it takes to get used to it?? Any info or advice would be appreciated.
Judy

Comments

  • 2bhealed
    2bhealed Member Posts: 2,064 Member
    #2
    Welcome grandma to the semi-colons.

    Where did your cancer come back and why the permanent colostomy?

    What did you do after your first dx and surgery? Did you change lifestyle or diet? Did the doctors recommend any changes? I am just curious.

    I am Stage 3 lymph pos with no mets but did not do any chemo (my choice....long story) and know that at Mayo they do not recommend any chemo for Stage 2 and lower but they also gave me no lifestyle or diet change recommendations and I happen to think THAT is a travesty especially since colon cancer is so often due to diet and stress.

    I don't know what the doctor's say our "chances" are (cuz I never listen to them anyway....haha) but I just know that I have 5 kids and a hubby that need me alive and kickin' and I have no plans on going anytime soon. I have been cancer free for 2 1/2 years and that's w/out chemo! woohoo! But I did major dietary and lifestyle changes and continue to implement even more as I discover them. I encourage you to search in those arenas too.

    So come on back and hang out. We love newcomers to the gang though we're sad you had to join!

    peace, emily who plans on being a grandma someday herself! :-)
  • jsabol
    jsabol Member Posts: 1,145 Member
    #3
    Dear Judy,
    Sorry that you have been slammed with this recurrance, just when you must have thought you could breathe again! Welcome to this site, but also sorry that you have to become a member.
    I am diagnosed with stage III and on to chemo, but there are others here who have been fighting this dragon in situations similar to yours, and I hope you hear from them. Stacey has beat Stage 4 thus far, and I'm sure there are more. There are also links to ostomy sites, I believe, from the main page of the cancer society.
    Good luck, stay in touch. Sending positive thoughts your way.
    Judy, too (Does the 47 refer to a birth year? Mine's 1950)
  • StacyGleaso
    StacyGleaso Member Posts: 1,233 Member
    #4
    Hi Judy...

    I too had 5FU via port continuously and radiation, however, that was prior to my surgery. The intention was to shrink the tumor, and increase the chance of removing all of it. During my 10 hour surgery, it was discovered that my liver was also a target. So, they took 40% of my liver as well. I did qualify as a stage 4, and today I am fine. I cannot explain it except for the fact that attitude really does matter. No time to think about the "what ifs" regarding chances of survival, just do it. Failure is not an option.

    It must have been tough to feel you were through all of this, only to have it come back. But at least you are recognizing and tackling it head on. I had a temporary ileostomy, so I cannot comment on a permanent colostomy. But from what others have stated, don't feel it's the end of your "normal" life to have one. Heck, millions of people DON'T have one, and many of them are FAR from normal! You'll be ok. Stay strong, and understand we're all here to support in any way possible.

    I feel comfortable saying to contact any of us "regulars" through this web site to answer any additional questions you may have.

    Positive blessings your way,

    Stacy
  • pattieb
    pattieb Member Posts: 168
    #5
    Welcome again Judy
    I am so glad I told you about us semi colons, I think you will enjoy everybody here.
    Pattie
  • nanuk
    nanuk Member Posts: 1,358 Member
    #6
    Hi Judy: I'm 3+ years out from mesorectal exicision w/colostomy, and was dx'd with recurrent
    cc in lungs last Dec. Now on chemo. Feel free to send me an e-mail, and I'll answer any questions I can..
    Here are some chat sites and forums for more Ostomy information:
    Every second Sunday: http://clubs.yahoo.com/clubs/ukostomysupport (UK
    Time)

    Monday: http://clubs.yahoo.com/clubs/peopleswithostomy2 (US Time)

    Tuesday: http://www.stuartonline.com/chatroom.htm (US Time)

    Wednesday: http://clubs.yahoo.com/clubs/ostomatessupport (US Time) and http://clubs.yahoo.com/clubs/ukostomysupport
    http://www.uoa.org/discussion_main.htm
    http://ostomyinternational.org/
    Bud
  • KrisS
    KrisS Member Posts: 229
    #7
    I am sorry that you have had to join this group. I can't say what the statistics are for your situation, but remember, statistics only tell what the general likelihood is of a response. Even if they told you there was only a 1% chance of a cure (and I am sure that it has got to be a lot better than that in your case), someone has to be in that 1%. For that one percent of people, it is a 100 percent cure. People spend millions of dollars on those powerball lotteries with far more terrible odds, because someone always wins!

    The fact that you have a good CT scan is a good start. Have they done a PET scan? Occasionally these can add information, so they know as much as possible before surgery.

    I have stage 4 rectal carcinoma. I had an ileostomy done which I never had reversed because I developed more metastatic disease. It took me not time at all to get used to it. I had had a radiation induced stricture which was causing me problems eating,however, and just being able to eat without cramping was such a treat I was elated!

    Best wishes,

    Kris
  • grandma047
    grandma047 Member Posts: 381
    #8
    jsabol said:

    Dear Judy,
    Sorry that you have been slammed with this recurrance, just when you must have thought you could breathe again! Welcome to this site, but also sorry that you have to become a member.
    I am diagnosed with stage III and on to chemo, but there are others here who have been fighting this dragon in situations similar to yours, and I hope you hear from them. Stacey has beat Stage 4 thus far, and I'm sure there are more. There are also links to ostomy sites, I believe, from the main page of the cancer society.
    Good luck, stay in touch. Sending positive thoughts your way.
    Judy, too (Does the 47 refer to a birth year? Mine's 1950)

    Hi Judy, Thanks for your positive thoughts. No the 47 in grandma047 means that I was 47 years old at the time that I started it. I will be 50 at the end of the month. March 29th. LOL. I was born in 1954. thanks again for the good thoughts.
    Judy
  • grandma047
    grandma047 Member Posts: 381
    #9
    2bhealed said:

    Welcome grandma to the semi-colons.

    Where did your cancer come back and why the permanent colostomy?

    What did you do after your first dx and surgery? Did you change lifestyle or diet? Did the doctors recommend any changes? I am just curious.

    I am Stage 3 lymph pos with no mets but did not do any chemo (my choice....long story) and know that at Mayo they do not recommend any chemo for Stage 2 and lower but they also gave me no lifestyle or diet change recommendations and I happen to think THAT is a travesty especially since colon cancer is so often due to diet and stress.

    I don't know what the doctor's say our "chances" are (cuz I never listen to them anyway....haha) but I just know that I have 5 kids and a hubby that need me alive and kickin' and I have no plans on going anytime soon. I have been cancer free for 2 1/2 years and that's w/out chemo! woohoo! But I did major dietary and lifestyle changes and continue to implement even more as I discover them. I encourage you to search in those arenas too.

    So come on back and hang out. We love newcomers to the gang though we're sad you had to join!

    peace, emily who plans on being a grandma someday herself! :-)

    Hello, I never really had time to do any lifesyle changes since I've never been well since last year. As far as changes diet, I've not really been able to eat anything without getting diarehea. As far as stress, Yes, I guess you would say I have stress. My husband hasn't worked in a year, my dad's very ill, and I had cancer come back twice in 6 months. A little stress, don't you think?? The doctor's kept telling me that my continued symptoms were because my body hadn't gotten back to normal after the first surgery. I then went back and had outpatient surgery in Sept because my suture site had narrowed. No cancer seen then. Then I continued to bleed and it started getting worse, so they decided to do a colonoscopy. Then told me that the cancer had came back at the suture site. Some people can get well without chemo and others can't. Each person is different. I was told that by having chemo the other time that it would only increase my chances of not having a recurrence by 5% and that it really wasn't worth the side effects, so the doctors and I chose for me to not have it. You know, hind sight is 20-20. I have not bitter about it though. They didn't know and neither did I. I trust all my doctors. I will fight as hard as I can. I too, plan on being around for a while. My children are 23 and 27, and I have twin granddaughters 3 yrs old and a grandson 5. I plan on seeing them marry someday. I'm not ready to throuw the towel in. I will do all I can to beat this and I WILL!! Thanks for talking to me. Oh, yeah, the permanent colostomy is because I have and had rectal cancer and this time it's too low to reconnect. Any more question, just ask. I will try to help.
    Judy, hoping that one day you will be a grandma too, it's wonderful!!!!
  • grandma047
    grandma047 Member Posts: 381
    #10
    StacyGleaso said:

    Hi Judy...

    I too had 5FU via port continuously and radiation, however, that was prior to my surgery. The intention was to shrink the tumor, and increase the chance of removing all of it. During my 10 hour surgery, it was discovered that my liver was also a target. So, they took 40% of my liver as well. I did qualify as a stage 4, and today I am fine. I cannot explain it except for the fact that attitude really does matter. No time to think about the "what ifs" regarding chances of survival, just do it. Failure is not an option.

    It must have been tough to feel you were through all of this, only to have it come back. But at least you are recognizing and tackling it head on. I had a temporary ileostomy, so I cannot comment on a permanent colostomy. But from what others have stated, don't feel it's the end of your "normal" life to have one. Heck, millions of people DON'T have one, and many of them are FAR from normal! You'll be ok. Stay strong, and understand we're all here to support in any way possible.

    I feel comfortable saying to contact any of us "regulars" through this web site to answer any additional questions you may have.

    Positive blessings your way,

    Stacy

    Hi Stacy, I am so glad that you are doing fine. That is my goal too. I believe that I have a pretty postivie attitude. God and many prayers are helping me. Yes, it was tough hearing that it came back, but after my initial anger, i went into the fighting mode. You're right about normal. What is normal?? I'm not a vain person, but I've never had a very high opinion of myself, so It's kinda hard to face. but.....I will make it. For myself and my family. I appreciate this site and all of your info. If it is ok, I would like to become a regualr here. I will try and help anyone else that I can with the knowledge of what I've went through and I would appreciate any info you all can give me. Thanks for the positive thoughts.
    Judy
  • grandma047
    grandma047 Member Posts: 381
    #11
    pattieb said:

    Welcome again Judy
    I am so glad I told you about us semi colons, I think you will enjoy everybody here.
    Pattie

    Hi Pattie, Thanks for the welcome. I believe that everyone here is wonderful. Hope to talk to you again soon.
    Judy
  • grandma047
    grandma047 Member Posts: 381
    #12
    nanuk said:

    Hi Judy: I'm 3+ years out from mesorectal exicision w/colostomy, and was dx'd with recurrent
    cc in lungs last Dec. Now on chemo. Feel free to send me an e-mail, and I'll answer any questions I can..
    Here are some chat sites and forums for more Ostomy information:
    Every second Sunday: http://clubs.yahoo.com/clubs/ukostomysupport (UK
    Time)

    Monday: http://clubs.yahoo.com/clubs/peopleswithostomy2 (US Time)

    Tuesday: http://www.stuartonline.com/chatroom.htm (US Time)

    Wednesday: http://clubs.yahoo.com/clubs/ostomatessupport (US Time) and http://clubs.yahoo.com/clubs/ukostomysupport
    http://www.uoa.org/discussion_main.htm
    http://ostomyinternational.org/
    Bud

    hi Bud, I'm so sorry that you have had a recurrence. What type of chemo are you on now? How long did it take before you were able to go out with owrrying after the colostomy? I know I'm really dumb when it comes to this. Thanks for all the sites. I'll be sure and write them down. I appreciate you taking the time to answer my questions when I'm sure you are going through a lot. We have to be there for each other. If you need to talk, I'm here too.
    Judy
  • grandma047
    grandma047 Member Posts: 381
    #13
    KrisS said:

    I am sorry that you have had to join this group. I can't say what the statistics are for your situation, but remember, statistics only tell what the general likelihood is of a response. Even if they told you there was only a 1% chance of a cure (and I am sure that it has got to be a lot better than that in your case), someone has to be in that 1%. For that one percent of people, it is a 100 percent cure. People spend millions of dollars on those powerball lotteries with far more terrible odds, because someone always wins!

    The fact that you have a good CT scan is a good start. Have they done a PET scan? Occasionally these can add information, so they know as much as possible before surgery.

    I have stage 4 rectal carcinoma. I had an ileostomy done which I never had reversed because I developed more metastatic disease. It took me not time at all to get used to it. I had had a radiation induced stricture which was causing me problems eating,however, and just being able to eat without cramping was such a treat I was elated!

    Best wishes,

    Kris

    Hi Kris, I started you a long email but the electric went off and I lost it. LOL I'm sorry this one may not be as long. I don't like stats anyway. You're right if you win the lottery then your chances are 100 percent and that if we beat cancer are chances are 100% too. Yes, I did have a good cat scan. I don't think I've ever had a PET scan. So many tests, I don't even know anymore. I know what you mean about eating and cramping. I do that all the time now. I don't know if it would be the radiation already or not. I'm just starting my 4th week. So it didnt take long to get used to the ostomy. I hope that I do alright with it. I guess I have no choice. It's either that or die, so I choose to live. I apprciate all your help in answering my questions. I wish you luck in your fight.
    Judy
  • Unknown
    Unknown
    #14
    Judy, I'm sorry that you need to be here but you couldn't have picked a better place to come. I cannot share any information with you as my situation as caregiver to my husband Bert is different. But I did want to welcome you to the group and hope you will post often to keep us up to date. Here's wishing nothing but the best and yes, you can beat this...we all are trying real hard and no one yet has said we can't.

    Welcome to our semi-colon group.

    Fondly,
    Monika
  • Unknown
    Unknown
    #15
    grandma047 said:

    Hi Judy, Thanks for your positive thoughts. No the 47 in grandma047 means that I was 47 years old at the time that I started it. I will be 50 at the end of the month. March 29th. LOL. I was born in 1954. thanks again for the good thoughts.
    Judy

    Hey, too cool! I was born in 54 too!!!, but I'm not a grandma yet. Son is 27 and am so looking forward to becoming one. But he's not even married and not ready yet to become a father. Until he's ready to be that, I can wait to be a grandmother.

    Fondly, Monika who welcomes you too this group!
  • nanuk
    nanuk Member Posts: 1,358 Member
    #16
    grandma047 said:

    hi Bud, I'm so sorry that you have had a recurrence. What type of chemo are you on now? How long did it take before you were able to go out with owrrying after the colostomy? I know I'm really dumb when it comes to this. Thanks for all the sites. I'll be sure and write them down. I appreciate you taking the time to answer my questions when I'm sure you are going through a lot. We have to be there for each other. If you need to talk, I'm here too.
    Judy

    Hi Judy..the colostomy hasn't slowed me down much..I'm able to do pretty much everything I did before the surgery.
    I originally had chemo / radiation after the surgery, and clear tests until Dec 2003, when spots showed up on lungs, confirmed cc mets. I am
    now on Folfox 6 protocol; Oxal/5fu/Leuc IV every 2 weeks, and 2 days 5fu pump. Bud
  • kickerrn
    kickerrn Member Posts: 22 Member
    #17
    Hi Judy
    I was diagnosed with colorectal cancer in Nov. 2001. I had surgery to remove my entire colon & rectum and a permanent ileostomy in Dec.2001. Having a positive attitude and a good ET (stoma nurse) will help with the adaption to the ostomy. I haven't let my ostomy change my life. I was back doing my taekwon do within 4 months of my surgery. I even competed in a Canadian tournament during my chemo. One good piece of advice I got was to not let the ostomy rule your life. You are a person with an ostomy not an ostomy with a person (lol). Also keep your ostomy appliance routine as simple as possible. I know how scary it is to have a recurrence. I was diagnosed with a recurrence in my liver in Nov.2003 and had a liver resection in Jan 2004. i am on chemo know & will be having surgery to remove a node in my lung next month. i feel like Stacy in that failure is not an option for me either. I have 2 kids (12 & 14) and intend to see them grow up into the wonderful adults that I hope that they will become. As my surgeon said playing the numbers game really doesn't matter cause all you care about is the one in which you are cured. Take care.
    Barb
  • grandma047
    grandma047 Member Posts: 381
    #18
    unknown said:

    Judy, I'm sorry that you need to be here but you couldn't have picked a better place to come. I cannot share any information with you as my situation as caregiver to my husband Bert is different. But I did want to welcome you to the group and hope you will post often to keep us up to date. Here's wishing nothing but the best and yes, you can beat this...we all are trying real hard and no one yet has said we can't.

    Welcome to our semi-colon group.

    Fondly,
    Monika

    Thanks Monika for the welcome and the positive attitude. I plan on beating this too and I try to stay positive even though I have moments that I feel depressed. I look at my grown children , my husband, and my grandchildren, even my parents and I know I have to fight this. And...I will as long as there is something I can to to beat this. I think this a wonderful group of caring individuals who are fighting with all their might and I am glad to be a part of it.
    Love, Judy H(grandma)
  • grandma047
    grandma047 Member Posts: 381
    #19
    kickerrn said:

    Hi Judy
    I was diagnosed with colorectal cancer in Nov. 2001. I had surgery to remove my entire colon & rectum and a permanent ileostomy in Dec.2001. Having a positive attitude and a good ET (stoma nurse) will help with the adaption to the ostomy. I haven't let my ostomy change my life. I was back doing my taekwon do within 4 months of my surgery. I even competed in a Canadian tournament during my chemo. One good piece of advice I got was to not let the ostomy rule your life. You are a person with an ostomy not an ostomy with a person (lol). Also keep your ostomy appliance routine as simple as possible. I know how scary it is to have a recurrence. I was diagnosed with a recurrence in my liver in Nov.2003 and had a liver resection in Jan 2004. i am on chemo know & will be having surgery to remove a node in my lung next month. i feel like Stacy in that failure is not an option for me either. I have 2 kids (12 & 14) and intend to see them grow up into the wonderful adults that I hope that they will become. As my surgeon said playing the numbers game really doesn't matter cause all you care about is the one in which you are cured. Take care.
    Barb

    Hi Barb, Sorry that you had a recurrence. I like your attitude though. I appreciate your info about the ostomy. It helps to hear someone say that you can't let it rule or change your life. I go on to the Msn Cancer Network and there is a woman on there that is having a really hard time with hers and it kinda discouraged me reading it. I guess I just need to hear positive things right now, so I appreciate you taking time to post me. I also feel like failure is not an option for me either. I am a christian and none of my family is in church. I hope to live to see that happen. I also have twin granddaughers 3 yrs old and a grandson 5 yrs old that I want to see grow up. My son is 23 and not married yet and I want to live to see him marry and have kids.I have a lot to keep fighting for and I will. Hope to talk to you again soon. Everyone on here is great.
    Love and prayers, Judy H(grandma)
  • taraHK
    taraHK Member Posts: 1,952 Member
    #20
    Dear Judy H.,

    I'm sorry to hear about your recurrence and the further treatments you now face. I wish you every success with that. I wanted to respond specifically to your questions about colostomy. I was diagnosed with rectal cancer December 2002 age 43. I had chemoradiation followed by surgery followed by chemo. My tumour was very low and I ended up having a colostomy. Of course it is an adjustment - especially psychologically. But, as you yourself say, "I choose life!". I can honestly say that now (several months later) it is really no big deal for me. I can do anything I want in terms of sports/activities and wear anything I want (except a bikini -- but that wouldn't have been a pretty sight anyway ha ha). A previous comment listed some websites and I'd encourage you to check these out. In particular, the United Ostomy Association website (uoa.org) has been a godsend for me. Many wonderful folk (like this site!) who are willing to share their vast practical experience and support. Please feel free to contact me directly if there is any thing I can help with re colostomy. By the way, some individuals are able to irrigate following colostomy, which offers an additional option.

    With best wishes,
    Tara
  • retiretofish
    retiretofish Member Posts: 5
    #21
    2bhealed said:

    Welcome grandma to the semi-colons.

    Where did your cancer come back and why the permanent colostomy?

    What did you do after your first dx and surgery? Did you change lifestyle or diet? Did the doctors recommend any changes? I am just curious.

    I am Stage 3 lymph pos with no mets but did not do any chemo (my choice....long story) and know that at Mayo they do not recommend any chemo for Stage 2 and lower but they also gave me no lifestyle or diet change recommendations and I happen to think THAT is a travesty especially since colon cancer is so often due to diet and stress.

    I don't know what the doctor's say our "chances" are (cuz I never listen to them anyway....haha) but I just know that I have 5 kids and a hubby that need me alive and kickin' and I have no plans on going anytime soon. I have been cancer free for 2 1/2 years and that's w/out chemo! woohoo! But I did major dietary and lifestyle changes and continue to implement even more as I discover them. I encourage you to search in those arenas too.

    So come on back and hang out. We love newcomers to the gang though we're sad you had to join!

    peace, emily who plans on being a grandma someday herself! :-)

    Can you tell me more about your diet change?

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