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.

roywalton | @roywalton | Apr 8 3:38pm

Froedardt Hospital is ok but not in the same class as Mayo. Especially for rectal anal, you would be better at Mayo if your insurance covers

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2 replies
prettyeyes6 | @prettyeyes6 | Apr 8 5:17pm
In reply to @roywalton "Froedardt Hospital is ok but not in the same class as Mayo. Especially for rectal anal,..." + (show)
@roywalton

Froedardt Hospital is ok but not in the same class as Mayo. Especially for rectal anal, you would be better at Mayo if your insurance covers

Jump to this post

How do you get into Mayo? I thought you have to get a recommendation in order to get an apt. ?

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1 reply
roywalton | @roywalton | Apr 8 5:53pm

That was years ago when a referral was required.....anyone can call these days, however they are busy so call soon with your medical record or diagnosis in front of you. I had my consult and surgery 6 weeks from my first call to them. Good luck!

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hhsn12211 | @hhsn12211 | Apr 11 3:34am
In reply to @happygrandpa "Thanks for asking, Colleen. I had a few challenging side effects from chemo-radiation. First, I had..." + (show)
@happygrandpa

Thanks for asking, Colleen. I had a few challenging side effects from chemo-radiation. First, I had some very painful bowel spasms, urgency and pain passing stools starting in the second week. The team prescribed dicyclomine and that did seem to calm the spasms. Ibuprofen was surprisingly helpful with pain overall.

Second, the skin burn from the radiation got very significant over time, reaching a peak the week or two after treatment ended. It got very painful to be in a car, to get in and out of bed, sitting in certain positions... The team had started me on moisturizing from even before the treatment started and about halfway through prescribed an ointment that was Aquaphor with lidocaine and that seemed to help. I'm happy to say that a month after treatment ended, my skin is mostly healed. It's so nice to have smooth, soft butt again! It's encouraging to see the healing capacity of the body.

Sidenote: throughout my treatment, people would tell me how good I looked. I joked to my wife that sometimes I wanted to say, "Oh yeah, wanna see my butt?" (I did not say that...).

Finally the fatigue and brain fog were a challenge as the treatment progressed and continued after for a few weeks. I have a busy job and a couple of times, I just cleared my calendar for a morning of peace and quiet at home. In addition to all the physical symptoms, going through these treatments, we are living our lives in two worlds, including a parallel universe of uncertainty and new concerns and worries. I think it's important to be gentle with oneself.

One instinctual response I had to this whole process was to withdraw internally, somewhat silently and invisibly to those around me. But I needed the internal quiet and space. It reminded my of what I felt naturally and unexpectedly after my mom passed away. A space opened up inside that was where my sadness and need to reflect was made possible. It was a private space that I think it's important to notice and make room for in your life when going through something like this.

Hope this is helpful. It was helpful to write it! Love and encouragement to all on this journey,

Rich

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Hello, my mother has a tumor in her rectum, 6 cm from the anus. The doctor advised her to take a dose of chemotherapy. When she took the first dose, she had an allergic reaction to it, and the epiglottis swelled and the pharynx swelled from the inside. She felt suffocated and unable to breathe. She remained in this condition for 10 days. After two days, we went to the doctor and he told her that Do not take a dose of chemotherapy and leave it on radiation only for 6 weeks to shrink the tumor. After that, an operation is performed to remove it. My mother is 63 years old and also has heart muscle disease. What do you advise me? Is it good for her? I am from Iraq, Baghdad.

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2 replies
Moderator
Colleen Young, Connect Director | @colleenyoung | Apr 12 6:30pm
In reply to @prettyeyes6 "How do you get into Mayo? I thought you have to get a recommendation in order..." + (show)
@prettyeyes6

How do you get into Mayo? I thought you have to get a recommendation in order to get an apt. ?

Jump to this post

@prettyeyes6, fellow member @roywalton is right. You can self-refer to Mayo Clinic. Here is how to submit a request for an appointment http://mayocl.in/1mtmR63

Let me know if you have any questions.

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verol65 | @verol65 | Apr 17 12:03am
In reply to @hhsn12211 "Hello, my mother has a tumor in her rectum, 6 cm from the anus. The doctor..." + (show)
@hhsn12211

Hello, my mother has a tumor in her rectum, 6 cm from the anus. The doctor advised her to take a dose of chemotherapy. When she took the first dose, she had an allergic reaction to it, and the epiglottis swelled and the pharynx swelled from the inside. She felt suffocated and unable to breathe. She remained in this condition for 10 days. After two days, we went to the doctor and he told her that Do not take a dose of chemotherapy and leave it on radiation only for 6 weeks to shrink the tumor. After that, an operation is performed to remove it. My mother is 63 years old and also has heart muscle disease. What do you advise me? Is it good for her? I am from Iraq, Baghdad.

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We are not doctors, so we can't really say if a treatment is good for a particular person or not. Best would be to have a second opinion from another oncologist, if possible.

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cvestor | @cvestor | Jul 28 8:56am
In reply to @colleenyoung "@jenmo, anus-sparing surgery may not be possible in your situation. If you would like to get..." + (show)
@colleenyoung

@jenmo, anus-sparing surgery may not be possible in your situation. If you would like to get a second opinion from Mayo Clinic, start here: http://mayocl.in/1mtmR63

I know you wish to avoid a colostomy and may not want to hear this right now. People live well with colostomy. It's an adjustment for sure. But it doesn't need to upend your lifestyle.
- Ostomy Support Group https://connect.mayoclinic.org/group/ostomy/

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Depends upon your life style at work I am a large farm that has LOTs of big harvesting equipment. Like what you see in the fields harvesting wheat soybeans etc. Machines break in the fields we have to fix them as quick as possible as time is money, Craweling around & sometimes almost into a machine with a bag would almost be impossible. Doctors think the world sits around & we eat bon bons. SOrry you want to eat we have to provide for the mouths of American even no bon bons eating when running huge farm machine

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cjay | @cjay | Jul 29 10:52am
In reply to @hhsn12211 "Hello, my mother has a tumor in her rectum, 6 cm from the anus. The doctor..." + (show)
@hhsn12211

Hello, my mother has a tumor in her rectum, 6 cm from the anus. The doctor advised her to take a dose of chemotherapy. When she took the first dose, she had an allergic reaction to it, and the epiglottis swelled and the pharynx swelled from the inside. She felt suffocated and unable to breathe. She remained in this condition for 10 days. After two days, we went to the doctor and he told her that Do not take a dose of chemotherapy and leave it on radiation only for 6 weeks to shrink the tumor. After that, an operation is performed to remove it. My mother is 63 years old and also has heart muscle disease. What do you advise me? Is it good for her? I am from Iraq, Baghdad.

Jump to this post

I did not have any chemotherapy before my surgery, just 5 courses of intense radiation to shrink the tumor as much as possible before surgery. After the surgery (where the tumor and 26 lymph nodes were removed) I had a temporary ileostomy for 6 months. I am 66 years old.

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doralchevy | @doralchevy | Jul 29 8:14pm

My 75 year old husband was diagnosed with rectal cancer last November and began his first treatment in late January. They were trying to stage it because of possible liver and lungs involvement. He refused the remove the anus option and began aggressive chemotherapy for rectal cancer and did 8 chemotherapy sessions. Then he did 6 weeks of chemo radiation, again because he refused the remove the anus option. Just completed that about three weeks ago and his latest bloodwork shows no rectal cancer DNA strands. His doctors say he is the poster child for organ preservation. He's going in for scans in a month to see how the questionable lung "dodads" have behaved. So yes, you should read up on the OPERA studies that save the anus. There is definitely hope!

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1 reply
cvestor | @cvestor | Jul 30 8:16am
In reply to @roywalton "Froedardt Hospital is ok but not in the same class as Mayo. Especially for rectal anal,..." + (show)
@roywalton

Froedardt Hospital is ok but not in the same class as Mayo. Especially for rectal anal, you would be better at Mayo if your insurance covers

Jump to this post

Froedardt is a waste of time. I did have a polyp removed there surgeon was great but their bookkeeping dept is bad. They charged me for a post op MRI and report read by a doctor. The hospital refused to say they made a mistake on that test as s I was not even in the United States Told them I have my passport with stamps from countries I was in & they are dated. They insisted it was me and I insisted it was not me. Called the insurance company & let them battle a refund from them. And now they are saying we have bills not paid from Feb cancelled checks covering these bills still does not seem to get them to believe we have paid them. SO if you do this hospital keep very records or they will double dip you in charges

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