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.

I just had my tumor removed from my sphincter muscle. They were able to reconstruct the muscle and I have no issues going to the bathroom. The recovery was not pleasant, but worth it to be able to poop normal.
Fingers crossed your outcome is great!!

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Welcome @jenmo. I hope you saw the hopeful post from @trishdep189 who also had a tumor removed from the sphincter muscle with successful reconstruction and full functionality.

Jen, when will you have surgery? Has your surgeon talked about reconstruction options and likely outcomes with you?

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@colleenyoung

Welcome @jenmo. I hope you saw the hopeful post from @trishdep189 who also had a tumor removed from the sphincter muscle with successful reconstruction and full functionality.

Jen, when will you have surgery? Has your surgeon talked about reconstruction options and likely outcomes with you?

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I haven’t been able to see the surgeon yet because she’s only in the office one day a week and we got COVID on our appointment day so now it’s pushed out weeks again. And every day seems more likely it will grow and I’ll end up on the bag. They haven’t discussed anything with me other than the oncologist saying she suspects the surgeon will want to do neoadjuvant chemo radiation first prior to surgery. And their attitude appeared to be one that makes me fear they’ll just put me on the bag as a matter of routine because they haven’t been responsive or sensitive to my needs at all including that I have a small child at home that I’m the sole caregiver for (and thus the chemo will affect them). Anyway they haven’t mentioned that they will try to save or spare or repair the sphincter just “it’s hard” so the bag seems likely because it’s easier for them 🙁 this is a major cancer research hospital too

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@trishdep189

I just had my tumor removed from my sphincter muscle. They were able to reconstruct the muscle and I have no issues going to the bathroom. The recovery was not pleasant, but worth it to be able to poop normal.
Fingers crossed your outcome is great!!

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Thank you so much and I’m so glad to hear this. I wonder if you mind sharing which hospital so I can tell my surgeon. I’m glad you’re doing well.

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I had my surgery in Stamford CT. I had. Nodule that they thought was at risk for but not cancerous so she scheduled the surgery to remove it. Turned out it was a tumor and she had to clean the margins, and due reconstruction of the muscle. Normally they do not remove the tumor but treat with chemo and radiation. Why are they removing yours?

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@jenmo

I haven’t been able to see the surgeon yet because she’s only in the office one day a week and we got COVID on our appointment day so now it’s pushed out weeks again. And every day seems more likely it will grow and I’ll end up on the bag. They haven’t discussed anything with me other than the oncologist saying she suspects the surgeon will want to do neoadjuvant chemo radiation first prior to surgery. And their attitude appeared to be one that makes me fear they’ll just put me on the bag as a matter of routine because they haven’t been responsive or sensitive to my needs at all including that I have a small child at home that I’m the sole caregiver for (and thus the chemo will affect them). Anyway they haven’t mentioned that they will try to save or spare or repair the sphincter just “it’s hard” so the bag seems likely because it’s easier for them 🙁 this is a major cancer research hospital too

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Hello, sorry for all your going through now. However, you wrote something that caused me to pause:

“And their attitude appeared to be one that makes me fear they’ll just put me on the bag as a matter of routine because they haven’t been responsive or sensitive to my needs at all.”

If you feel uncomfortable about the physician’s group should you maybe consider getting another doctor?

God has a way of revealing signs and situations that let us know this is not the one, time to look for another.

I was having horrible pain from herniated disc for years which led me to fall several times due to nerve issues as a result of the disk.

December 2021, I fell and broke my left foot it healed and three months later foot turned to jello turning and I broke the right foot.

The spine doctor wanted to do spinal fusion surgery right after the right foot healed. I asked him what were some other options aside from that.

For some reason He was insulted that I asked about other options. He went on a rant saying I was challenging his credentials and he did surgery on his 85 year old mother and she was doing great. He knew what was the best treatment for me, I couldn’t get a word in.

When he stopped ranting, I explained that it was not about his credentials it was about my quality of life after surgery and there should be options other than fusion surgery. I asked if he could guarantee a positive outcome.

He said no, and huffed and puffed citing based on X-rays and nerve test, spinal fusion was the best alternative, but I stood firm.

My husband and I prayed about the doctor, talked it over and both came to the conclusion this doctor didn’t have my best interest in mind.

We both started surfing the net looking at other alternatives and talked with people personally and social media groups who had the same experience I was having.

Surprisingly, many who opted for spinal fusion surgery on hindsight wished they would have considered other alternative sources. Then there were those who said they were doing well after surgery and their only issue were the limited bending and twisting spinal flexibility.

As my mobility deteriorated due to chronic pain and fatigue from being in pain I just wanted to feel better. Then my mom passed away and between disk issues and grief I was in serious pain.
We decided to go to Florida to enjoy the sunshine and worked at a Hurricane Ian relief shelter.

Eventually, I took a break but my husband kept volunteering to help others. Our motto has always been that despite our personal circumstances and struggles we’re never to overwhelmed to help others.

Prayer and faith I pushed through and thank God daily for healing even though I was hurting. He heard our prayers and I began to make changes based on what I believed God’s directions for me was.

I kept making changes and doing what I was led to do and now I am pain free and was able to enjoy the beaches after not being able for years to lift my feet to walk without having to stop and sit down.

Long story I know. 🙃

I just want to encourage you to take the time to get a second opinion. You are fighting to live and as Colleen asked, “ Has your surgeon talked about reconstruction options and likely outcomes with you?

If not please ask the doctor. If you’re not satisfied with the answer, then seek out another physician(s) to make the best informed decisions about your health.

Said a prayer for you. Wishing you a New Year filled with of happiness, healing, and peace!

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I was diagnosed with anal cancer in april. My cancer was HPV related and that responds to chemo and radiation very well. I saw a surgeon and he said he'd only do surgery if treatment didn't cure the cancer. I did 6 weeks of radiation and 2 weeks of chemo. Jumping to Sept I had a sigmoidoscopy (sp) and the cancer is gone. It sounds like you need a second opinion .

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Jemma, I am newly diagnosed anal/rectal cancer , also a single mum of 4 with daughter in renal dialysis, although older than you . For me, surgery is last option (Australia) with combined radiation/chemo being the go to. I am a nurse who has changed other people's colostomy bags for years, but for me, getting this out of me the quickest way possible (surgery) was my priority . We are taught that body image is everything…it is not & I took on the mantra that " my body does not define who I am" . My daughter also shared a view from a friend with a colostomy who said that given the choice, she would not return to the normal way . She controls how, when & where she poops, no more urgency, no more accidents. This helped me accept the possibility of not having an anus. I also looked at the fact that visually nobody would know. Its very important that you build a support network for yourself & for your child. I adopted the attitude that it is what it is & threw myself into researching what I could do to retain some control of this 'thing' & the symptoms that didn't belong in my body. This helped the sense of helplessness & fear I was feeling. I hope this has helped a little.

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Please reach out to me. 42 year old Mom of 3 here and Mayo was able to cut mine out very near sphincter with robotic surgeon and colorectal surgeon working together to do so. So far, no colostomy. Doing my darkest to keep it that way. I also did rectal and pelvic radiation and chemo. No easy thing! But I’m doing well a year later.

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I would definitely get a second opinion and even a third if you still don’t feel comfortable. I was diagnosed with a partial blockage and assumed cancerous tumor. They couldn’t get much of a sample and it came back as high grade dysplasia. I had a CT and it suggested that lymph nodes may be involved indicating a later stage. My GI referred me to a colorectal surgeon. If met with him and felt very dismissed and that he was basically not taking my current lifestyle into consideration at all. He recommended removal of my entire colon, and said that I would possibly end up with a permanent colostomy if they couldn’t do a J pouch. He didn’t read my CT notes or even look through the images and didn’t really even address the cancer portion of the diagnosis. I then paid for an out of pocket consult with Mayo. They spent over two hours with me, but ultimately agreed that my colon should be removed (I have ulcerative colitis so higher risk). I couldn’t have the surgery there because of insurance, but got in with a major cancer center after the tumor board met and accepted me. My surgeon said he wanted to be as conservative as possible and while he said I may have a temporary colostomy, was confident it wouldn’t be permanent. His goal was to do a resection if possible. That was what ended up happening (actually had a to resect two separate areas (sigmoid and then he removed my cecum, ovary appendix and resection was done in that side). I developed complications after surgery (a leak at the reconnection site) and had another surgery. No bag yet again. I ended up with two more surgeries within six months (again complications and unexpected things) but still did not require a bag. It’s been 3.5 years and I am still doing well. I’ve maintained my active lifestyle and still run and exercise and live life. I’m so thankful he gave me a chance and thought outside the box. Trust your gut instinct

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