New Member and a Question

Lily Flower
Lily Flower Member Posts: 260 Member
in Colorectal Cancer #1

Hello everyone,

I joined this site a few days ago and I have read some of the topics. You guys are so inspiring and brave to talk about personal battles and being there for one another. 

They found a malignant tumor in my sigmoid colon during my colonoscopy about 2 weeks ago. The tumor actually obstructed the camera scope to go further. I have been going to the doctors' appointments with blood tests, CT scan of the abdominal area to see if the tumor has spread to my nearest organs.  I have another CT scan for the chest area this coming Monday. Yesterday I even had the genetic counseling/testing for the Lynch Syndrome and that result won't be available until next month.

Good news is from the CT scan (abdominal area) and the pathology report stated that my tumor has not been matastisize.  All my organs by my abdoinal area are good. Also after the examination from my surgeon on this past Tuesday, he said the tumor is intact in my colon, has not affected my rectum and he said the surgery will be done easily. He still wanted me to have the CT scan for the chest area just to rule it out. 

My question is: Has anyone here had a total colectomy? I have to decide whether I should just have the affected sigmoid colon taken out and have colonoscopy every year afterwards, or have the whole thing taken out and don't have to worry having colon cancer in the future. The surgery for the total colectomy will not require a colostomy bag. The small intestine will be resected to the rectum. I was also told that I will have to go to the bathroom about 4-6 times a day. Yikes! What is the lifestyle like afterwards? I don't want to always have to worry about where the bathroom is especailly when I'm outside. 

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Comments

  • Lily Flower
    Lily Flower Member Posts: 260 Member
    edited July 2017 #2
    lp1964 said:

    Dear Friend.

    I am sorry to hear about your diagnosis. From all I know not having any large intestine where most of the liquids are resorbed often require an ostomy. You don't want to end up with uncontrollable bowel issues. In my opinion you should get at least one ideally two more completely independent opinions. 

    Wish you all the best.

    Laz

    Hi Laz,

    Hi Laz,

    Thank you! My surgery date still has not been set yet so I still have time to think about what I need to do. :)

  • lp1964
    lp1964 Member Posts: 1,239 Member
    edited July 2017 #3
    Dear Friend.

    I am sorry to hear about your diagnosis. From all I know not having any large intestine where most of the liquids are resorbed often require an ostomy. You don't want to end up with uncontrollable bowel issues. In my opinion you should get at least one ideally two more completely independent opinions. 

    Wish you all the best.

    Laz

  • JanJan63
    JanJan63 Member Posts: 2,478 Member
    #4
    Welcome! They gave you a

    Welcome! They gave you a choice? Interesting. I have an illeosomy and I have no problem with it. Some minor annoyances but compared to the bathroom issues I had forever, this is a walk in the park. I'm glad you're open to the idea of a colostomy so that if they have no choice you won't be as upset. Some people are very against the idea and are traumatized by just the thought of it. I have a friend who has one and she's terrified that people will find out. I tell people if the subject comes up, like if I have to explain certain eating habits. It's just a part of me and helped save my life. If someone is disturbed by it, whatever. I'm sure they have some hidden secret I'd be disturbed by, too if I knew about it.

    Jan

  • Lily Flower
    Lily Flower Member Posts: 260 Member
    edited July 2017 #5
    JanJan63 said:

    Welcome! They gave you a

    Welcome! They gave you a choice? Interesting. I have an illeosomy and I have no problem with it. Some minor annoyances but compared to the bathroom issues I had forever, this is a walk in the park. I'm glad you're open to the idea of a colostomy so that if they have no choice you won't be as upset. Some people are very against the idea and are traumatized by just the thought of it. I have a friend who has one and she's terrified that people will find out. I tell people if the subject comes up, like if I have to explain certain eating habits. It's just a part of me and helped save my life. If someone is disturbed by it, whatever. I'm sure they have some hidden secret I'd be disturbed by, too if I knew about it.

    Jan

    Hi Jan! Thanks! Love the

    Hi Jan! Thanks! Love the picture of you and your horse. 

    I'm open minded of having the ileostomy bag if I have to.  It doesn't bother me. Just like you said, it saves my life and it is part of me. People shouldn't judge and people shouldon't feel embarrassed if they have to wear one. 

    My surgeon gave me all the ins and outs, pros and cons of having either the partial colectomy and total colectomy. I just have to decide if I want the partial and deal with having colonoscopy every year after and the chance of having colon cancer coming back in the future, or do the total colectomy and never have to worry about having the colon cancer again but do have to deal with the inconvenience of going to the bathroom more frequently on the daily basis. 

  • lp1964
    lp1964 Member Posts: 1,239 Member
    edited July 2017 #6
    Dear Friend.

    In my opinion unless you have a crazy family history of colon cancer or Chrowns disease removing the entire colon is excessive. It is not just a bathroom issue, it's an overall health issue. A lot of nutrients are absorbed in the colon. Losing all that may attribut some major health issues in your future. Just get other opinions.

    All the best.

  • danker
    danker Member Posts: 1,276 Member
    #7
    Choices

    I had tumor removed and a temporary ileostomy for 6 weeks,then my plumbing was reconected. Been NED(no evedence of disease) for last 7 years.  Only effect: occasional diarrhea.  Otherwise normal life style.  Suggest you do same. Good luck!! 

  • blessed39
    blessed39 Member Posts: 90 Member
    #8
    Options

    Hi Lily Flower, It's great that you have some options. I had stage four colon cancer several years ago.
    The surgeon removed about twelve inches of my colon. I had several rounds of chemo and all the radation

    treatments my body could tolorate. I agree with Laz on the second opinion. As for as the bath room visits

    I just start yelling "short colon" and usually get a laugh. I firmly believe a good sense of humor will get you a

    long ways. After a couple of years of clear CT scans, my oncologist told me he would release me if I would keep getting colonoscopys. I now get one every year like clockwork. He always finds a small polyp or two. These are inconvient, but sure beats dying. My cancer experience effected me so much, I wrote a short entitled "How I Beat Stage Four Colon Cancer." If you care to read it just go to my page and click on blog.You will see the story there. God bless you in your journey. blessed39

     

     

  • EissetB
    EissetB Member Posts: 133
    #9
    I'm glad you've found this

    I'm glad you've found this site of very friendly and caring group. We're a family here in the same boat. In my CT scan and MRI, it showed healthy organs. The surgeon though suggested to have chemo therapy for 12 sessions in 6 months. I didn't get colostomy but 6 months treatment is awful long for me. So I quit my job and collected my SS benefits instead. Yesterday I had my 7th infusion and will pull it out on Sunday which will be tomorrow. I'm glad you have the options. Wish I had, but I was kind of scared when my oncologist explained about the percentage of surviving level when chose not to have the chemo therapy. I wish you the best and good luck with whatever your decision would be. God bless us all

    Eisset

  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
    #10
    Sorry

    Sorry for your diagnosis and it sounds like you have gotten a lot of information already.  I'm also glad to hear that it didn't spread so that is very encouraging news.  Mine was rectal cancer and they took out my rectum and part of my colon and then resected some of the larger colon and made a new rectum, which they call the J-pouch.  This is not something you would get if you have colon cancer.  My bathroom issuses are difficult even having made a new rectum because I'm not able to process my food because a lot of the colon/rectum has been removed and sometimes it can be 15 times a day.  I'm limited to what I'm able to do and where to go.  Never can I go to a restaurant and eat out because it would go right through me.  Your doctors won't tell you this so be very careful in what you decide and try to get a lot of information from a lot of different people.  I'm wishing well for you and a full recovery.

    Kim

  • darcher
    darcher Member Posts: 304 Member
    edited July 2017 #11
    As annabelle41415 said, learn

    As annabelle41415 said, learn all you can about the pros and cons of either result.  Once it's done, it's done and there is no going back.  Plus, your prognosis can change from one test to another.  I started out being told all I'd need was a simple surgery.  That was one month ago.  Now it's 28 sessions of chemo and radiation plus surgery and who knows what after that.  I want to keep as much of me as I can.  It's there for a reason so I'm going to try to leave things intact as much as possible.

  • beaumontdave
    beaumontdave Member Posts: 1,289 Member
    #12
    Lily Flower, welcome. I had

    Lily Flower, welcome. I had the sigmoid section removed almost ten years ago now, and have had no recurrance in my colon, not even a polyp. I did have mets pop up in my liver twice, but I've had no bathroom issues or colon trouble for a very long while. Unless they demonstrate that you're prone to have more cancer show up, or colon issues have plagued you before the cancer arrived, I'd be wary of removing the entire colon, until you and your doctors are certain that's the best course.....................................................Dave

  • Lily Flower
    Lily Flower Member Posts: 260 Member
    #13
    lp1964 said:

    Dear Friend.

    In my opinion unless you have a crazy family history of colon cancer or Chrowns disease removing the entire colon is excessive. It is not just a bathroom issue, it's an overall health issue. A lot of nutrients are absorbed in the colon. Losing all that may attribut some major health issues in your future. Just get other opinions.

    All the best.

    thank you. I will. I'm

    thank you. I will. I'm fortunate that I still have some time to decide. 

  • Lily Flower
    Lily Flower Member Posts: 260 Member
    #14
    danker said:

    Choices

    I had tumor removed and a temporary ileostomy for 6 weeks,then my plumbing was reconected. Been NED(no evedence of disease) for last 7 years.  Only effect: occasional diarrhea.  Otherwise normal life style.  Suggest you do same. Good luck!! 

    Thank you Danker and

    Thank you Danker and congratulations! Best wishes to you too. 

  • Lily Flower
    Lily Flower Member Posts: 260 Member
    #15
    blessed39 said:

    Options

    Hi Lily Flower, It's great that you have some options. I had stage four colon cancer several years ago.
    The surgeon removed about twelve inches of my colon. I had several rounds of chemo and all the radation

    treatments my body could tolorate. I agree with Laz on the second opinion. As for as the bath room visits

    I just start yelling "short colon" and usually get a laugh. I firmly believe a good sense of humor will get you a

    long ways. After a couple of years of clear CT scans, my oncologist told me he would release me if I would keep getting colonoscopys. I now get one every year like clockwork. He always finds a small polyp or two. These are inconvient, but sure beats dying. My cancer experience effected me so much, I wrote a short entitled "How I Beat Stage Four Colon Cancer." If you care to read it just go to my page and click on blog.You will see the story there. God bless you in your journey. blessed39

     

     

    Blessed, thank you. I read

    Blessed, thank you. I read your blog with tears and laughs. Love your gas story. Lol! i hope others can find your story as a hope and solace like I do. Best wishes to you sir! 

  • Lily Flower
    Lily Flower Member Posts: 260 Member
    #16
    EissetB said:

    I'm glad you've found this

    I'm glad you've found this site of very friendly and caring group. We're a family here in the same boat. In my CT scan and MRI, it showed healthy organs. The surgeon though suggested to have chemo therapy for 12 sessions in 6 months. I didn't get colostomy but 6 months treatment is awful long for me. So I quit my job and collected my SS benefits instead. Yesterday I had my 7th infusion and will pull it out on Sunday which will be tomorrow. I'm glad you have the options. Wish I had, but I was kind of scared when my oncologist explained about the percentage of surviving level when chose not to have the chemo therapy. I wish you the best and good luck with whatever your decision would be. God bless us all

    Eisset

    Thank you Eisset. i find

    Thank you Eisset. i find everyone here are caring and wonderful folks. 

  • Lily Flower
    Lily Flower Member Posts: 260 Member
    #17
    Annabelle41415 said:

    Sorry

    Sorry for your diagnosis and it sounds like you have gotten a lot of information already.  I'm also glad to hear that it didn't spread so that is very encouraging news.  Mine was rectal cancer and they took out my rectum and part of my colon and then resected some of the larger colon and made a new rectum, which they call the J-pouch.  This is not something you would get if you have colon cancer.  My bathroom issuses are difficult even having made a new rectum because I'm not able to process my food because a lot of the colon/rectum has been removed and sometimes it can be 15 times a day.  I'm limited to what I'm able to do and where to go.  Never can I go to a restaurant and eat out because it would go right through me.  Your doctors won't tell you this so be very careful in what you decide and try to get a lot of information from a lot of different people.  I'm wishing well for you and a full recovery.

    Kim

    Hi Kim. Oh my goodness...15

    Hi Kim. Oh my goodness...15 times a day? I'm so sorry to hear. Yes I'm doing a lot of research and also asking everyone here as well. It's a decision I have to make and live by it. My best wishes to you! 

  • Lily Flower
    Lily Flower Member Posts: 260 Member
    #18
    darcher said:

    As annabelle41415 said, learn

    As annabelle41415 said, learn all you can about the pros and cons of either result.  Once it's done, it's done and there is no going back.  Plus, your prognosis can change from one test to another.  I started out being told all I'd need was a simple surgery.  That was one month ago.  Now it's 28 sessions of chemo and radiation plus surgery and who knows what after that.  I want to keep as much of me as I can.  It's there for a reason so I'm going to try to leave things intact as much as possible.

    Thank you Darcher for your

    Thank you Darcher for your input. I know this decision I make is permanent. I have to weigh in a lot of pros and cons. 

  • Lily Flower
    Lily Flower Member Posts: 260 Member
    #19
    beaumontdave said:

    Lily Flower, welcome. I had

    Lily Flower, welcome. I had the sigmoid section removed almost ten years ago now, and have had no recurrance in my colon, not even a polyp. I did have mets pop up in my liver twice, but I've had no bathroom issues or colon trouble for a very long while. Unless they demonstrate that you're prone to have more cancer show up, or colon issues have plagued you before the cancer arrived, I'd be wary of removing the entire colon, until you and your doctors are certain that's the best course.....................................................Dave

    Thank you Dave! I know this

    Thank you Dave! I know this isn't a decision I can make in a snap. I do have to weigh all the pros and cons since I'm in the high risk category. Best wishes to you!

  • Lily Flower
    Lily Flower Member Posts: 260 Member
    #20
    Thank you everyone!

    Thank you everyone for all your inputs and sharing your experiences. I'm so grateful for every one of you. Both of my parents passed away from colon cancer as well as my maternal grandfather and uncle. So I'm in the high risk category. im doing a lot research and talking to my family and I hope whatever the decision I make will be the best one for me. Hugs to all! 

  • Trubrit
    Trubrit Member Posts: 5,804 Member
    #21
    Lily Flower said:

    Thank you everyone!

    Thank you everyone for all your inputs and sharing your experiences. I'm so grateful for every one of you. Both of my parents passed away from colon cancer as well as my maternal grandfather and uncle. So I'm in the high risk category. im doing a lot research and talking to my family and I hope whatever the decision I make will be the best one for me. Hugs to all! 

    Family history

    I am truly sorry for you losses, but lets put a stop to that, right now.

    YOU WILL BEAT THIS!

    We have come a long way over the years, and know more about using not only medication, but our own natural abitilites, to beat this disease. 

    Tru

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