Very low rectal cancer, Ive got so many questions

Posted by gabriel74 @gabriel74, 6 days ago

Hello all, Im new here.
Im Gabriel, 49 years old diagnosed on march 11 th with low rectal tumor sessile 2.1 cm.
after MRI it was discovered that tumor had not gone through rectal wall, but they did say 3 lymph nodes look swollen.
so the staging was set to T1-2 N1 M0
the tumor is 1.6 CM above the anorectal junction.
It was found during a routine colonoscopy, I had no symptoms whatsoever.
My oncologist put me on CAPOX, 4 rounds or oxiplatin and xeloda, then radiation for 5 weeks as part of my CRT.
I just finished my 3 out of 4 infusions today with oxiplatin
I was sent to see a surgeon, who straight out told me APR surgery with permanent colostomy.
didnt trust this surgeon much because he is a general surgeon, not a proctologist.
Got a second opinion with a proctologist, he said some surgeons do whats called a Sphincter preserving surgery, but he doesnt do that and all he would be able to do is APR.
he did feel inside and also looked inside and said he didnt feel anything, or saw anything. He looked puzzled and said chemo seems to be reducing the tumor size quite a bit.
Im now temped to do watch and wait if cCR is achieved, or at the very least seek a surgeon that can possibly do a sphincter preserving surgery.
Does anyone have any experience with this kind of situation?
Id like to preserve my anus, if at all possible
Does anyone know surgeons that do that procedure?
I live in Arizona
Thank you so much, God bless.

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

I don’t have a referral, but I wish you all the best as you get your treatment and surgery. I get what you want and why. I hope you can find someone to help. I’m sure you’ll get some responses from those who are dealing with this condition.

Was this a screening colonoscopy?

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run from that surgeon all they know is cut but they do not have to live with the after effects That is what surgeons are taught cut I was give a choice of an surgery with a bag or die. I ran from that person Get to Mayo clinic in Az You will be in good hands I did Mayo in Rochester Whole different attitude on treating patients

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@celia16

I don’t have a referral, but I wish you all the best as you get your treatment and surgery. I get what you want and why. I hope you can find someone to help. I’m sure you’ll get some responses from those who are dealing with this condition.

Was this a screening colonoscopy?

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Thank you Celia,
I too hope to find a better option.
Yes, I was feeling perfectly fine. No symptoms whatsoever, just routine check up because of my age.

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@cvestor

run from that surgeon all they know is cut but they do not have to live with the after effects That is what surgeons are taught cut I was give a choice of an surgery with a bag or die. I ran from that person Get to Mayo clinic in Az You will be in good hands I did Mayo in Rochester Whole different attitude on treating patients

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@cvestor I agree, im in the midst of looking and Mayo clinic is on the top, Ill call them monday to see when I can set up an appointment.
Was your situation similar to mine?
how long ago was that?
Thanks for taking the time to reply to my message and give me some hope, I just have a hard time accepting what the first surgeon said.
the second one did say that some surgeon do perform sphincter preserving surgery but that he doesnt do it.
thats why Ive keep looking.
from my research, the location of my tumor is in an area where sphincter surgery can be performed, especially after reducing the size.
Anyway, thank you. have a great day.

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Have you consulted with Tori City Coko Rectal or Md Anderson? I am in AZ and I met with a comp rectal surgeon that wanted to remove my colon and Mayo surgeon who recommended same. I was able to have a LAR and while I did have lots of complications, it has now been 5 years and I’m still NED. I was reluctant to change my lifestyle so significantly. My tumor was in the sigmoid though and removal was recommended because if my 25 year history with Ulcerative colitis

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MD Anderson is also on the top of best in the whole for cancer treatments. Most hospitals and doctors just want your money, since cooperations have taken over the medical field, they don't care what your life is after they have chopped your body up After all if you die which we all will do at some time there are 100 more people behind you looking for a cure. I have asked questions said no that's not what I want and even with the local oncology dept they hate me. As I say it is my body I will have control of what is going on Or I ask is this really what we need to do or why are we doing this. Since I am not a sheep & follow the flock of what ever they say I have been labeled a difficult patient. I had one bully doctor shame
me for taking up 20 minutes of his time. gee he was the oncologist seeing patients for that time. so Ask questions if you don't understand ask again too bad they have to take more than 15 seconds it's your life & your body

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Hi Gabriel. Your medical history is so similar to someone I know. The treatment, the stage. He was told by a surgeon the same permanent ileostomy. He got a second opinion at Mayo and got the help of preserving the sphincter. To make the story short, he got the surgery with the ileostomy. After 3 month got the reversal. Now almost 2 month post surgery he is adjusting to the reversal and now feeling much better. Dr is Dr Young-Fadoc. I wish you the best. Keep looking for alternative.

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I had anal cancer. Six weeks of Xeloda and radiation. It was brutal. I was told that the treatment continues to work for 6 months after it is stopped. I waited patiently and sure enough after close to a year , I was declared in remission. My sphincter muscle was completely destroyed from the radiation. I needed a colostomy. It was difficult to accept, but better than APR surgery. It’s been almost 8 months now. My quality of life has improved dramatically. My surgeon was Dr. Luca Stocchi Mayo Clinic Jacksonville Florida. I highly recommend him.

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@cvestor

MD Anderson is also on the top of best in the whole for cancer treatments. Most hospitals and doctors just want your money, since cooperations have taken over the medical field, they don't care what your life is after they have chopped your body up After all if you die which we all will do at some time there are 100 more people behind you looking for a cure. I have asked questions said no that's not what I want and even with the local oncology dept they hate me. As I say it is my body I will have control of what is going on Or I ask is this really what we need to do or why are we doing this. Since I am not a sheep & follow the flock of what ever they say I have been labeled a difficult patient. I had one bully doctor shame
me for taking up 20 minutes of his time. gee he was the oncologist seeing patients for that time. so Ask questions if you don't understand ask again too bad they have to take more than 15 seconds it's your life & your body

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cvestor (@cvestor)
Good for you for continuing to advocate for yourself! We are all we have really, and when it comes to life choices we are the only one who should be making them! And HOW the heck can we make an informed decision without all the knowledge we can find!

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My husband has a similar history and dx, although he is older. The first doctor wanted to dive right in with surgery, bag, reversal. Ran from him. Went to Mayo in Phoenix. We also live in AZ. Best decision ever! Currently doing fu5 chemo with 25 radiation treatments
. Goal is to shrink it to avoid surgery. He's been very comfortable and getting excellent care.
Time will tell the rest of the story, but I'd run to Mayo if I were you. Best wishes

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