Has anyone had to have the APR Surgery?

kgd322
kgd322 Member Posts: 10 Member
in Anal Cancer #1

I completed my treatments on 4/9, but a pathology report I had on 6/8 came back as suspicious for possible malignancy... my surgeon said that means it is inconclusive and they have sent the tissue samples to Moffitt Cancer Center Pathology for them to run test on it.  I am now waiting for them to contact me to set up an appt to see their surgeon and do any test they want to run (MRI, CT.. PET.. don't know)

My surgeon from the begining said my chances of needing APR surgery is 80 to 90 percent based on the type of cancer and how low it is in the anus.  It is a scary surgery from what I have read, so just wondering if anyone has had to have it and how it went and how their doing?

 

Thanks,

Kim

Comments

  • pacificnw
    pacificnw Member Posts: 29 Member
    #2
    Hi Kim, 

    Hi Kim, 

    I had the surgery a year and a half ago. Let me know what you find out and I can share my experience if you want. It's not that bad!

  • kgd322
    kgd322 Member Posts: 10 Member
    edited July 2020 #3
    pacificnw said:

    Hi Kim, 

    Hi Kim, 

    I had the surgery a year and a half ago. Let me know what you find out and I can share my experience if you want. It's not that bad!

    Thanks... I would GREATLY

    Thanks... I would GREATLY appreciate you sharing your experience with me.

  • eihtak
    eihtak Member Posts: 1,473 Member
    edited July 2020 #4
    Kim...

    Hi, 

    (And welcome, but sorry for the need)

    I was initially dx in 2011 with Stage 3b anal cancer and due to the size and location of my tumor I had ostomy surgery prior to starting my chemo/radiation regimen.  At the time I was sooooo sick and in such pain that I did little research on surgeries of this nature. I have since learned a lot! There are several different ways to perform a colostomy (large intestine) or ileostomy (small intestine)...these terms relate to where the stoma (or opening on the abdomen) is located and collection bag is attached. Within that there are some variations as well. Also, there are surgeries that are not permanent but done with the hope of future reversal so do not include the removal of the anus/rectum. Mine is a "loop" ostomy which means  a loop of the colon has been pulled through the opening (stoma) on my belly. Mine was not meant to be permanent and in an ideal world would have been reversed after healed from radiation. That was going on 10 years ago now and it is permanently a part of me and my life. While technically it could have been reversed as I have all the parts (just out of commission in the anal area) the severe scaring has left the potential for bowel incontinence too high. This is not always the case but after seeing a specialist and testing sphincter control, I know I made the right choice. 

    APR (abdominal perineal resection) is permanent right off the bat and involves removal of anal/rectal stump and because of that is a longer healing time too. Yet, since I have my anus, I deal with a common mucus discharge so wear a pad pretty much 24/7 and that would not be the case with APR and what is light heartedly called a "barbie butt."

    I'll admit there is an adjustment period both physically and emotionally to living with an ostomy, but it really did not take long to get used to it for me. I learned to tweak my diet just a little as to what and when I eat (not always, sometimes I have no rules and just enjoy in moderation) but, with a few simple changes I am able to control or anticipate when I may have output (poop) in the bag because there is no sphincter in the stoma to control that. If I do that, I then immediately empty the bag and am able to go through most of my day with a flat, empty, unnoticeable bag for much of the day. I am active...I swim, I travel, outside of covid I chase grandkids on baseball and soccer fields, and live a full life! The bag can even have advantages if in a situation where you are not near a restroom and HAVE to go (poop anyhow) Lol. 

    I did find an in person ostomy support group that was very helpful early on and there are several on line groups. I really think this is one area that you need to have someone who isn't just supportive but can relate first hand to what there is to deal with and help learn options. If you find that this is in your future, please try to connect with what is called a wound care or ostomy nurse and they will assist with placement of stoma on your belly (makes a difference depending on how you typically dress and with finding the best supplies for your personal size and skin type).

    Maybe none of this will ever be necessary for you, but if it is, please reach out for more tips and tricks, and know that life with an ostomy is truly less frightening than whatever is going through your mind right now and there are maybe even people you know who have one and you don't even know it!

    Stay in touch, be well...

    katheryn

  • kgd322
    kgd322 Member Posts: 10 Member
    #5
    eihtak said:

    Kim...

    Hi, 

    (And welcome, but sorry for the need)

    I was initially dx in 2011 with Stage 3b anal cancer and due to the size and location of my tumor I had ostomy surgery prior to starting my chemo/radiation regimen.  At the time I was sooooo sick and in such pain that I did little research on surgeries of this nature. I have since learned a lot! There are several different ways to perform a colostomy (large intestine) or ileostomy (small intestine)...these terms relate to where the stoma (or opening on the abdomen) is located and collection bag is attached. Within that there are some variations as well. Also, there are surgeries that are not permanent but done with the hope of future reversal so do not include the removal of the anus/rectum. Mine is a "loop" ostomy which means  a loop of the colon has been pulled through the opening (stoma) on my belly. Mine was not meant to be permanent and in an ideal world would have been reversed after healed from radiation. That was going on 10 years ago now and it is permanently a part of me and my life. While technically it could have been reversed as I have all the parts (just out of commission in the anal area) the severe scaring has left the potential for bowel incontinence too high. This is not always the case but after seeing a specialist and testing sphincter control, I know I made the right choice. 

    APR (abdominal perineal resection) is permanent right off the bat and involves removal of anal/rectal stump and because of that is a longer healing time too. Yet, since I have my anus, I deal with a common mucus discharge so wear a pad pretty much 24/7 and that would not be the case with APR and what is light heartedly called a "barbie butt."

    I'll admit there is an adjustment period both physically and emotionally to living with an ostomy, but it really did not take long to get used to it for me. I learned to tweak my diet just a little as to what and when I eat (not always, sometimes I have no rules and just enjoy in moderation) but, with a few simple changes I am able to control or anticipate when I may have output (poop) in the bag because there is no sphincter in the stoma to control that. If I do that, I then immediately empty the bag and am able to go through most of my day with a flat, empty, unnoticeable bag for much of the day. I am active...I swim, I travel, outside of covid I chase grandkids on baseball and soccer fields, and live a full life! The bag can even have advantages if in a situation where you are not near a restroom and HAVE to go (poop anyhow) Lol. 

    I did find an in person ostomy support group that was very helpful early on and there are several on line groups. I really think this is one area that you need to have someone who isn't just supportive but can relate first hand to what there is to deal with and help learn options. If you find that this is in your future, please try to connect with what is called a wound care or ostomy nurse and they will assist with placement of stoma on your belly (makes a difference depending on how you typically dress and with finding the best supplies for your personal size and skin type).

    Maybe none of this will ever be necessary for you, but if it is, please reach out for more tips and tricks, and know that life with an ostomy is truly less frightening than whatever is going through your mind right now and there are maybe even people you know who have one and you don't even know it!

    Stay in touch, be well...

    katheryn

    Thank you Katheryn.... the

    Thank you Katheryn.... the waiting to know what direction this is going to go... safe to monitor and watch.. or APR surgery only option.... or more treatments... is stressful in it self.. so just have to take it one day at a time, keep a positive outlook and obviously hope and pray for the best!!

  • eihtak
    eihtak Member Posts: 1,473 Member
    #6
    Kim...

    Yes, the waiting seems to be the one constant for us all one way or another! 

    Keep in touch and stay well...

    katheryn

  • tanda
    tanda Member Posts: 174 Member
    edited August 2020 #7
    kgd322

    one thing to consider is that radiation is still working and can be working up to 6 months or more..  Was there a reason for a biopsy so soon after the end of treatment?  Usually the area is tender and swollen and scar tissue is forming, which can be misleading.  A slide review from Moffit was a good idea; further surgery so soon after the end of treatment is a bit unusual . ..if offered, a second opinion would be useful.

     

    Let us know the outcome of this investigation.  I hope it turns out to be  nothing serious.

     

     

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