Long term QOL re: bowel habits & Treatment/Surgical approaches

Posted by mikendale @mikendale, Feb 1, 2018

I have been diagnosed with stage 3 rectal cancer and have had both open/J-pouch and robotic/non-J-pouch surgical solutions proposed by various surgeons. While I’m probably naïve to assume there’s an answer to this beyond the conflicting papers I’ve read, I’d welcome insight from people who’ve had various procedures and what their experiences have been 2+ years after the surgeries. I’d love to make an optimal choice, but am coming to the conclusion no one really knows what that answer is.

Thanks,
Mike

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Hi Mike, welcome.
I'd like to bring @c945105 @soul @coliemore @lamerex4 @travelgirl and @starrlight into this discussion to share their experiences with either the J-pouch surgery (Ileoanal anastomosis) or robotic (laparoscopic) surgery for rectal cancer.

Such a difficult decision to make when the evidence does not clearly indicate one approach being superior to the other. Did your surgeon indicate any factors specific to the location of your tumor that might help your decision?

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@mikendale It has been 2 yrs and 1 month since my surgery for stage 1 cecum cancer. I had laparoscopic surgery. I am fine today. I healed perfectly and the pain was minimal. I actually only needed 2 Tylenol every 8 hours for 4 weeks after i was I discharged from the hospital. I had a foot of my colon removed along with 20 lymph nodes. Hope this helps and I wish you the best.

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@colleenyoung

Hi Mike, welcome.
I'd like to bring @c945105 @soul @coliemore @lamerex4 @travelgirl and @starrlight into this discussion to share their experiences with either the J-pouch surgery (Ileoanal anastomosis) or robotic (laparoscopic) surgery for rectal cancer.

Such a difficult decision to make when the evidence does not clearly indicate one approach being superior to the other. Did your surgeon indicate any factors specific to the location of your tumor that might help your decision?

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My Mom had rectal cancer 2 years ago. I am the care giver. We had a good discussion with the doctor before my Mom went on Laparascopic surgery. My Mom did not want the operations in the beginning but her doctor was so patient to explain and guide through detail procedures of the Laparascopic surgery. Besides, the doctor had introduced us with his other patients who had gone through the same procedure and have been treating the cancer. My Mom had finally negotiated the days to be shorten between the first Laparascopic surgery and second normal operation( to connect and remove the ostomy). My Mom was so pleased with the procedure for the 2 operations. She did not have to attach the bag after second operation. After one year, she did scan and found nothing. Doctors are so pleased with the outcome. It was a good experience for her. It is encouraging to go for Laparascopic surgery. The sooner the better.

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@colleenyoung

Hi Mike, welcome.
I'd like to bring @c945105 @soul @coliemore @lamerex4 @travelgirl and @starrlight into this discussion to share their experiences with either the J-pouch surgery (Ileoanal anastomosis) or robotic (laparoscopic) surgery for rectal cancer.

Such a difficult decision to make when the evidence does not clearly indicate one approach being superior to the other. Did your surgeon indicate any factors specific to the location of your tumor that might help your decision?

Jump to this post

Thank you for the welcome and thank you @soul and @travelgirl for sharing your experiences. I find the answers to my questions are often bigger than my questions. My impression has been that laparoscopic and robotic were independent approaches to surgery. Also, despite being described as a J-pouch by one of my surgeons, I will apparently be having my large intestine reattached to the remains of my rectum. I’m quite scared of quality of life following the reattachment from a bowel movement perspective regardless of a pouch or straight attachment. I’ve read papers suggesting both have problems and some that suggest the long-term experiences are comparable at more than two years out. Given the location of my cancer, radiation is typically indicated and I understand that can further degrade bowel movement experience. I have a chance to participate in a trial that is exploring whether radiation’s benefits outweigh the risks for my staging (where I could randomly be selected to not receive radiation). Anyway, sorry for the rambling and many, many thanks for the thoughtful responses!

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@colleenyoung

Hi Mike, welcome.
I'd like to bring @c945105 @soul @coliemore @lamerex4 @travelgirl and @starrlight into this discussion to share their experiences with either the J-pouch surgery (Ileoanal anastomosis) or robotic (laparoscopic) surgery for rectal cancer.

Such a difficult decision to make when the evidence does not clearly indicate one approach being superior to the other. Did your surgeon indicate any factors specific to the location of your tumor that might help your decision?

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I see I forgot to answer your question, Colleen. One surgeon believes that J-pouch will be necessary to minimize “stacking” & assist in control / frequency. Another, believes j-pouch comes with its own challenges that don’t warrant its use in my case, though he indicated he may form some type of pouch once surgery is underway and he sees what conditions may warrant. Both of these surgeons are very experienced and from top institutions. Consistently, both cited the complexity and challenge of operating in the tight space of the male pelvis. I really wish there was more consistency between the two, because I have immense confidence in and respect for both.

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@colleenyoung

Hi Mike, welcome.
I'd like to bring @c945105 @soul @coliemore @lamerex4 @travelgirl and @starrlight into this discussion to share their experiences with either the J-pouch surgery (Ileoanal anastomosis) or robotic (laparoscopic) surgery for rectal cancer.

Such a difficult decision to make when the evidence does not clearly indicate one approach being superior to the other. Did your surgeon indicate any factors specific to the location of your tumor that might help your decision?

Jump to this post

I'm not sure how one can make that call. Is getting a third opinion an option?

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I had laprascopic surgery for stage 3 rectal cancer in Vancouver Canada in July 2016 and reversal surgery in July 2017 all went well but now I am in the midst of LARS and considering further surgery and a permanent colostomy as QoL with all the LARS symptoms of leakage, frequency, clustering and daipers is very troublesome. Anyone had this third op after reversal?

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