1. < Colorectal Cancer

Don’t want to lose anus

Posted by jenmo @jenmo, Dec 23, 2022

New member. Just received diagnosis with tumor 1cm from sphincter. Has anyone had a tumor shrunk and removed without losing their anus/sphincter and ability to poop normally? Any hope at all?

The idea of losing my body parts and changing my life forever, colostomy bag and whatnot as a single mom in her 40s is excruciatingly scary and depressing. Afraid of how I will manage chemo as a single mom but even more how to feel whole.

Desperate to hear hope that I might not lose ability to poop normally.

Interested in more discussions like this? Go to the Colorectal Cancer Support Group.

gr20230301 | @gr20230301 | Mar 19, 2023
In reply to @trishdep189 "I too had my tumor removed from my sphincter muscle in November. I had no chemo..." + (show)
@trishdep189

I too had my tumor removed from my sphincter muscle in November. I had no chemo or radiation and my last scan came out clean. It took a bit yo heal but I have no issues with going to the bathroom. Hoping I will never have to go thru it again. My surgeon was in Stamford, CT and my oncologist in NYC at Sloan.

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Hi, @trishdep189, can you share your surgeon name? I am in CT Hartford region. I have a tumor 1.4 cm away from anus, and looking for help. Thanks.

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1 reply
amariewilkinson | @amariewilkinson | Mar 19, 2023

Sorry to hear of the diagnosis. They couldn’t prove cancer with me prior to surgery, so my surgeon, Dr D’Angelo got together with another young robotic surgeon at Mayo in Rochester, MN, and they resected my rectum and saved me from having permanent colostomy bag. It was after pathology came back that they found 2 cancers in it and a few months later, I started Chemo/radiation protocol. My oncologist at same location is Dr Halfdanarson. Hope this helps some.

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2 replies
amariewilkinson | @amariewilkinson | Mar 19, 2023
In reply to @amariewilkinson "Sorry to hear of the diagnosis. They couldn’t prove cancer with me prior to surgery, so..." + (show)
@amariewilkinson

Sorry to hear of the diagnosis. They couldn’t prove cancer with me prior to surgery, so my surgeon, Dr D’Angelo got together with another young robotic surgeon at Mayo in Rochester, MN, and they resected my rectum and saved me from having permanent colostomy bag. It was after pathology came back that they found 2 cancers in it and a few months later, I started Chemo/radiation protocol. My oncologist at same location is Dr Halfdanarson. Hope this helps some.

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Dr Behm was the name of the robotic surgeon there.

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2 replies
trishdep189 | @trishdep189 | Mar 19, 2023
In reply to @gr20230301 "Hi, @trishdep189, can you share your surgeon name? I am in CT Hartford region. I have..." + (show)
@gr20230301

Hi, @trishdep189, can you share your surgeon name? I am in CT Hartford region. I have a tumor 1.4 cm away from anus, and looking for help. Thanks.

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Dr. Marilee Freitas
Surgeon in Stamford, Connecticut

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2 replies
Yousif Al-Saleh | @yssaf | Mar 20, 2023
In reply to @omardr "Hi Hoping all turns out well for you Just wanted to explain a point. It’s not..." + (show)
@omardr

Hi
Hoping all turns out well for you
Just wanted to explain a point. It’s not that your doctors are insensitive to your needs or that it’s easier for them to put you on the bag, it’s your disease stage that dictates the type of surgery most suitable for you. If your tumor is malignant then the surgeon must remove it completely to avoid recurrence. They must remove the tumor with a safety margin around it which is very difficult to achieve and still keep your sphincter intact since tumor is only 1cm from sphincter. I’m sure your doctors have your best interest in mind and will always seek the best management option for their patients, however sometimes this is out of their hands like in your case.

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Thanks @omardr for your valid point, and I hope @jenmo was able to make the best decision for her by now .

I am a Rectal Cancer Patient at Mayo since 2021 Dec , and Have just gone through TNT ( total neoadjuvant treatment ) followed by a Long-course radiation and finally underwent an Abdominal perineal resection with End Colostomy .

In fact, After finishing the Chemo Therapy and Then Radiation, I felt completely fine but i was not sure if this situation would last . However i have asked the doctor to reevaluate if I really need such opera-tion at that time and I went in different process of evaluation for this purpose . Until it was found out that it would best to go for it to avoid any future complication which was explained accordingly by the doctor .

Now . What i wanted to highlight is that the fact that I am a person with Very Active Life Style , in which if I would got my rectum reconnected ( Assumption ) , the risk of potential complication would always be there . Specially there is no solution to create the Rectum function in Medical Science yet. Hence my surgeon suggested to go for Colostomy as the chance of my ability to adapt was height as per him as I had a positive attitude towards the plan .

I am happy I did, and I will continue this attitude of looking at my situation in constructive mindset . I can share with you that I am doing well with the Stoma since my Surgery back in Oct 2022 without feeling any limitation.

My message to everyone who is going through similar case is to be keep reflecting on the fact that there are solutions that could save your life and Also create a better life style when its compared to what we would think “ going back to normal” would be .

God created lots of reasons for every one of us to still enjoy life and go forward with own missions, However it's imperative to show gratitude to all blessings around us. e.g. Science, Technology, Doctors , Researches , people etc etc etc

Take your time to decide based on current risk and your aspiration and Go forward .

Good Luck ,

Yousif

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1 reply
gr20230301 | @gr20230301 | Mar 20, 2023
In reply to @amariewilkinson "Dr Behm was the name of the robotic surgeon there." + (show)
@amariewilkinson

Dr Behm was the name of the robotic surgeon there.

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Thank you so much.

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gr20230301 | @gr20230301 | Mar 20, 2023
In reply to @trishdep189 "Dr. Marilee Freitas Surgeon in Stamford, Connecticut" + (show)
@trishdep189

Dr. Marilee Freitas
Surgeon in Stamford, Connecticut

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Thank you very much.

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Moderator
Colleen Young, Connect Director | @colleenyoung | Apr 2, 2023
In reply to @yssaf "Thanks @omardr for your valid point, and I hope @jenmo was able to make the best..." + (show)
@yssaf

Thanks @omardr for your valid point, and I hope @jenmo was able to make the best decision for her by now .

I am a Rectal Cancer Patient at Mayo since 2021 Dec , and Have just gone through TNT ( total neoadjuvant treatment ) followed by a Long-course radiation and finally underwent an Abdominal perineal resection with End Colostomy .

In fact, After finishing the Chemo Therapy and Then Radiation, I felt completely fine but i was not sure if this situation would last . However i have asked the doctor to reevaluate if I really need such opera-tion at that time and I went in different process of evaluation for this purpose . Until it was found out that it would best to go for it to avoid any future complication which was explained accordingly by the doctor .

Now . What i wanted to highlight is that the fact that I am a person with Very Active Life Style , in which if I would got my rectum reconnected ( Assumption ) , the risk of potential complication would always be there . Specially there is no solution to create the Rectum function in Medical Science yet. Hence my surgeon suggested to go for Colostomy as the chance of my ability to adapt was height as per him as I had a positive attitude towards the plan .

I am happy I did, and I will continue this attitude of looking at my situation in constructive mindset . I can share with you that I am doing well with the Stoma since my Surgery back in Oct 2022 without feeling any limitation.

My message to everyone who is going through similar case is to be keep reflecting on the fact that there are solutions that could save your life and Also create a better life style when its compared to what we would think “ going back to normal” would be .

God created lots of reasons for every one of us to still enjoy life and go forward with own missions, However it's imperative to show gratitude to all blessings around us. e.g. Science, Technology, Doctors , Researches , people etc etc etc

Take your time to decide based on current risk and your aspiration and Go forward .

Good Luck ,

Yousif

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@yssaf, please accept my belated welcome. I really appreciate your sharing your story along with @omardr's comment supporting @jenmo and decisio-making. It helps so much to hear from others who have been there.

I hope you'll also follow the Ostomy support group here: https://connect.mayoclinic.org/group/ostomy/

Yousif, you mention that you have returned to your active lifestyle with a stoma without feeling limited. Can you share an activity that you thought you'd have to adapt or give up and that you were able to continue after all?

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1 reply
phylicaf22 | @phylicaf22 | Apr 3, 2023
In reply to @amariewilkinson "Sorry to hear of the diagnosis. They couldn’t prove cancer with me prior to surgery, so..." + (show)
@amariewilkinson

Sorry to hear of the diagnosis. They couldn’t prove cancer with me prior to surgery, so my surgeon, Dr D’Angelo got together with another young robotic surgeon at Mayo in Rochester, MN, and they resected my rectum and saved me from having permanent colostomy bag. It was after pathology came back that they found 2 cancers in it and a few months later, I started Chemo/radiation protocol. My oncologist at same location is Dr Halfdanarson. Hope this helps some.

Jump to this post

Did they do transanal robictic

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phylicaf22 | @phylicaf22 | Apr 3, 2023
In reply to @amariewilkinson "Dr Behm was the name of the robotic surgeon there." + (show)
@amariewilkinson

Dr Behm was the name of the robotic surgeon there.

Jump to this post

Which robictic procedure did you have? Trans anal or something else

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