who had an APR and a colosomy bag.....how is it and any regrets

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u574713
u574713 Member Posts: 6
edited September 2014 in Anal Cancer #1

I am scheduled to have APR(Adominoperineal Resection) surgery with colostomy bag on Oct.6, 2014 @ University California of Irvine due to  stage 3 anal cancer. Not sure I am making the right decision. I went through chemo( 5FU/mitimyicin) and 33 treatments of radiation in 2013. was considered "cured" in Dec 2013, however they neglected to treat the lump I originally went to the doctors for so now went from stage late one/early 2 to stage 3, the lump never showed up on the CT or Pet scans although my colonoscopy showed it. The doctors explained even if they knew about the mass, it would have been treated the same way as this is the normal procedure for treating anal cancer. So now I have gone out of network of my HMO insurance and have the chief of colorectol surgery at UCI saying the only thing left to do is surgery. I have a 50% chance it will be cured. I also got a 3rd opinion and he said surgery is the only option now. UCI did put me on Xleloda for another 2 weeks to keep it at bay. It is in my regional lymph nodes. Any thoughts?

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  • eihtak
    eihtak Member Posts: 1,473 Member
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    u574713

    Wow, how frustrating this must be for you.

    I do have a colostomy as a result of Stage 3b anal cancer as well. I though, had my ostomy surgery prior to the protocal chemo/rad treatment. There are several ways to perform this surgery and mine was originally supposed to be temporary so is called a loop ostomy which is easier to reverse. Because of this I still have my anus and rectum. Well, the radiation did more damage then anticipated and the reversal is suspected to leave me incontinent of stool so it is now permanent. I have had it now for almost 3 1/2 years.

    I will admit there was an adjustment period both emotionally and also physically. I joined both an on-line and in person support group that were extremely helpful especially early on. This is one area that others who don't deal with, even our loved ones, try as they might, just do not have the ability to relate.....so important to talk with some who do to answer some unique questions.

    All that being said, regrets.....NO, not at all! Sure it would be nice if none of this was ever laid at my feet, but it truely is a managable thing. I am active with kids and grandkids, I swim, and at 55yrs old am back in college. I do have to be mindful of some foods as the digestive process is a bit more touchy but so are many others who do not have an ostomy. I had to make some easy clothing adjustments so as to fit comfortably with the bag, but again an easy fix.

    I do reccommend searching for what is called a stoma or wound care nurse prior to the surgery and to answer immediate questions following. This is their specialty and will help with placement of stoma (opening on your abdomen) and getting the best supplies for your body. Also check out some online info through    C3life   (a support group) and the  UOAA  (United Ostomy Association of America) They have groups throughout the country and are full of helpful advice and can google on line.

    In time, and it does take time, it becomes like second nature to deal with an ostomy, so you will need to be patient. I kept reminding myself that babies are not comfortable with toilet issues for a couple years and so our bodies need to relearn this new routine as well.

    Please feel free to ask me any questions you may have regarding this and hopefully I can help or find someone who will.

    My situation is slightly different than yours as my surgery was first, but the ostomy concerns are similar. I hope this helped.

    Be well.....

    katheryn

     

  • sandysp
    sandysp Member Posts: 868 Member
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    Yes - can you get to a Cancer Center?

    Where is the best place near you to go for a 2nd opinion?? In the Anatomy of Hope (a great book, by the way). Having no regrets is a big contributor to recovery due to "The Anatomy of Hope".

    Good luck,

    Sandy

  • mp327
    mp327 Member Posts: 4,440 Member
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    u574713

    I can't give you any advice on dealing with an ostomy, but I am very sorry that you are in this situation now.  As has already been said here, after an adjustment period, most people adapt just fine. 

    Unfortunately, when initial treatment for anal cancer has failed or there is recurrence, APR is almost always the next step.  It seems to me that the lump you say was missed was in the treatment field and would have been radiated.  I guess I'm a little unclear about how it could possibly have been missed.

    Have you checked out the colorectal board on this site?  I'm sure there are people on that discussion board who are living with ostomies who can give you some great advice and information.

    I wish you all the very best with your upcoming surgery.  You will get through this, you will. 

    Martha

  • Ouch_Ouch_Ouch
    Ouch_Ouch_Ouch Member Posts: 508 Member
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    eihtak said:

    u574713

    Wow, how frustrating this must be for you.

    I do have a colostomy as a result of Stage 3b anal cancer as well. I though, had my ostomy surgery prior to the protocal chemo/rad treatment. There are several ways to perform this surgery and mine was originally supposed to be temporary so is called a loop ostomy which is easier to reverse. Because of this I still have my anus and rectum. Well, the radiation did more damage then anticipated and the reversal is suspected to leave me incontinent of stool so it is now permanent. I have had it now for almost 3 1/2 years.

    I will admit there was an adjustment period both emotionally and also physically. I joined both an on-line and in person support group that were extremely helpful especially early on. This is one area that others who don't deal with, even our loved ones, try as they might, just do not have the ability to relate.....so important to talk with some who do to answer some unique questions.

    All that being said, regrets.....NO, not at all! Sure it would be nice if none of this was ever laid at my feet, but it truely is a managable thing. I am active with kids and grandkids, I swim, and at 55yrs old am back in college. I do have to be mindful of some foods as the digestive process is a bit more touchy but so are many others who do not have an ostomy. I had to make some easy clothing adjustments so as to fit comfortably with the bag, but again an easy fix.

    I do reccommend searching for what is called a stoma or wound care nurse prior to the surgery and to answer immediate questions following. This is their specialty and will help with placement of stoma (opening on your abdomen) and getting the best supplies for your body. Also check out some online info through    C3life   (a support group) and the  UOAA  (United Ostomy Association of America) They have groups throughout the country and are full of helpful advice and can google on line.

    In time, and it does take time, it becomes like second nature to deal with an ostomy, so you will need to be patient. I kept reminding myself that babies are not comfortable with toilet issues for a couple years and so our bodies need to relearn this new routine as well.

    Please feel free to ask me any questions you may have regarding this and hopefully I can help or find someone who will.

    My situation is slightly different than yours as my surgery was first, but the ostomy concerns are similar. I hope this helped.

    Be well.....

    katheryn

     

    Concur

    eihtak's advice about seeing an ostomy nurse is excellent. They have their own certification program and are incredibly knowledgeable with much practical experience and can offer a lot of education about living after the procedure. A medical center such as the one you plan to go to will have at least one available for sure. See theirs now.

  • u574713
    u574713 Member Posts: 6
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    Thanks everyone for your input

    I really appreciate your thoughts and is helpful. However, I am still thinking about not doing the surgey as I feel fine right now except for the fatique and bleeding from the core biospy on the lump that has not healed yet. I am worried about that too. My 1st surgeon told me she wouldn't perform the APR as she felt she could not get all of the cancer in the lymph nodes and that I would have to deal with wound care that would involve several surgeries down the road. She gave me 1 year to live so that is why I went to the university. Now he is telling me it would heal because they do a new prcedure where they take skin from the buttocks to use to help it heal and has been successful. Does anybody know of anyone who did not do surgery and how long they lived?  I don't know who to believe as the doctors all have different opinions. The third doctor told me he could do the surgery and cure me, well that's what they told me in the begining that I would be cured with the chemo and radiation. Most people and all of the doctors think I should do the surgery as I have 50% of being cured. Thanks for any input.

  • mp327
    mp327 Member Posts: 4,440 Member
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    u574713 said:

    Thanks everyone for your input

    I really appreciate your thoughts and is helpful. However, I am still thinking about not doing the surgey as I feel fine right now except for the fatique and bleeding from the core biospy on the lump that has not healed yet. I am worried about that too. My 1st surgeon told me she wouldn't perform the APR as she felt she could not get all of the cancer in the lymph nodes and that I would have to deal with wound care that would involve several surgeries down the road. She gave me 1 year to live so that is why I went to the university. Now he is telling me it would heal because they do a new prcedure where they take skin from the buttocks to use to help it heal and has been successful. Does anybody know of anyone who did not do surgery and how long they lived?  I don't know who to believe as the doctors all have different opinions. The third doctor told me he could do the surgery and cure me, well that's what they told me in the begining that I would be cured with the chemo and radiation. Most people and all of the doctors think I should do the surgery as I have 50% of being cured. Thanks for any input.

    Surgery or no?

    I would say that the only thing you can probably be sure of is that without the surgery, your cancer will advance to the point of being uncurable.  I would hate to see you not do the surgery then have later regrets.  But it's a hard decision, no doubt about that.  I believe that doing a flap to help with healing is done quite often with this surgery. 

    Have you had tests to rule out any spread to other organs?  That would help make my decision if I were in your situation. 

    I wish our friend, Laz, would chime in and let you know how his experience has been.  I think it's been almost a year since he had APR surgery.

    Take care and please let us know what you decide to do.

  • lp1964
    lp1964 Member Posts: 1,239 Member
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    Dear Friend,

    I had that surgery due to rectal cancer. The surgery included taking half of my abdominal muscle to support the pelvic floor and promote healing.

    I had the surgery a Cedar Sinai in Los Angeles by Dr. Murrell colorectal surgeon and Dr. Tahernia plastic surgeon.

     

    I always say if you have a chance in life take it. It may be better or may be worse, but what you don't want is regret that you didn't try.

    You may feel ok now, but as your illness progresses you may change your mind and it might be too late. Stage 3 cancer is not the end of the world and most people do great.

    The colostomy is not too hard to adjust to either.

    Laz 

     

  • sandysp
    sandysp Member Posts: 868 Member
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    u574713 said:

    Thanks everyone for your input

    I really appreciate your thoughts and is helpful. However, I am still thinking about not doing the surgey as I feel fine right now except for the fatique and bleeding from the core biospy on the lump that has not healed yet. I am worried about that too. My 1st surgeon told me she wouldn't perform the APR as she felt she could not get all of the cancer in the lymph nodes and that I would have to deal with wound care that would involve several surgeries down the road. She gave me 1 year to live so that is why I went to the university. Now he is telling me it would heal because they do a new prcedure where they take skin from the buttocks to use to help it heal and has been successful. Does anybody know of anyone who did not do surgery and how long they lived?  I don't know who to believe as the doctors all have different opinions. The third doctor told me he could do the surgery and cure me, well that's what they told me in the begining that I would be cured with the chemo and radiation. Most people and all of the doctors think I should do the surgery as I have 50% of being cured. Thanks for any input.

    The Anatomy of Hope by Jerome Groopman

    I keep recommending this book so if you have read me saying this before, I apologize. This is an easy read. He devotes quite a bit of time to the subject of regret. It's a wonderful book. I am glad you are posting your true feelings here. It helps everyone when you do that.

    Have you talked with a psychologist at all? I see one at my cancer center. Depression can certainly taint our decision making process so I would make sure that you are getting help with anxiety and/or depression even if it is just talking to a professional who deals with cancer patients. I am not taking meds and find getting support from talk therapists is working for me if I keep at it.

    Just a couple of thoughts. Whatever you decide is right for you, we all support you here.

    Sincerely,

    Sandy