1. < Colorectal Cancer

Very low rectal cancer, I've got so many questions

Posted by gabriel74 @gabriel74, Jun 8, 2024

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.

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crollins527 | @crollins527 | Jul 16, 2024

I too had a very low rectal tumor 5cm so staged at 3 due to the size. I did 6 months of chemo and 5 weeks of radiation. All the cancer was gone. first two scans were still gone. Had an MRI in June, some concerns for residual/recurrence disease. Just had biopsy at Brigham in Boston yesterday. Surgeon said it does not look like cancer, looks like scar tissue, but doing biopsy anyway. we are on the Watch and Wait. So far it has worked. Hope everything goes as we think this week. I have another friend doing the same treatment, she had a stage 2 rectal cancer. she is still clean after 6 months on the watch and wait. If it reoccurs we will need the surgery but I am okay with waiting and hopefully will never need it. I did go to a general surgeon when I was first diagnosed and they wanted to take everything out and put a bag on me. I got a second opinion at Dana Farber, they told me they were going to cure me and if I needed surgery, they would do it not a general surgeon…so much to think about with this disease.. hope this helps.

REPLY
1 reply
9hoursand23minutes | @9hoursand23minutes | Mar 17 8:42pm
In reply to @crollins527 "I too had a very low rectal tumor 5cm so staged at 3 due to the..." + (show)
@crollins527

I too had a very low rectal tumor 5cm so staged at 3 due to the size. I did 6 months of chemo and 5 weeks of radiation. All the cancer was gone. first two scans were still gone. Had an MRI in June, some concerns for residual/recurrence disease. Just had biopsy at Brigham in Boston yesterday. Surgeon said it does not look like cancer, looks like scar tissue, but doing biopsy anyway. we are on the Watch and Wait. So far it has worked. Hope everything goes as we think this week. I have another friend doing the same treatment, she had a stage 2 rectal cancer. she is still clean after 6 months on the watch and wait. If it reoccurs we will need the surgery but I am okay with waiting and hopefully will never need it. I did go to a general surgeon when I was first diagnosed and they wanted to take everything out and put a bag on me. I got a second opinion at Dana Farber, they told me they were going to cure me and if I needed surgery, they would do it not a general surgeon…so much to think about with this disease.. hope this helps.

Jump to this post

Hi, my husband just diagnosed with 5cm low. We haven’t been given further info except ctscan no M. Did they check lymph nodes for yours? I’m very nervous. We meet Dana Farber team this week. Thanks.

REPLY
2 replies
hopenjoy2024 | @hopenjoy2024 | Mar 17 10:25pm
In reply to @9hoursand23minutes "Hi, my husband just diagnosed with 5cm low. We haven’t been given further info except ctscan..." + (show)
@9hoursand23minutes

Hi, my husband just diagnosed with 5cm low. We haven’t been given further info except ctscan no M. Did they check lymph nodes for yours? I’m very nervous. We meet Dana Farber team this week. Thanks.

Jump to this post

Take a breath. Give him a big hug and stay strong.

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mjdavey36 | @mjdavey36 | Mar 18 2:02pm

My Mother completed Folfox treatment and they said she had a near complete response. There is something left of the tumor, but the biopsy was negative. The protocol is the big surgery - but our surgeon reccomended another option they have been trying - going to a special GI Dr that does a colonoscopy and tries to scoop out the tumor. If they can access it and they find no cancer beneath then you are in good shape to not need the Big Surgery. We will know more next month!

Best wishes to you!!

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quimbie | @quimbie | Mar 19 5:22am
In reply to @nildam "Hi Gabriel. Your medical history is so similar to someone I know. The treatment, the stage...." + (show)
@nildam

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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Thank you for your answer here. My son faces this now. He has not started treatment yet but maybe next week. He will be 51 end of month and he did have some issues before having the colonoscopy. We heard all the worse things that might happen during all this but we are hopeful that the treatment will save him from surgery.

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niki28 | @niki28 | Mar 24 11:25am
In reply to @crollins527 "I was diagnosed last April 2023, my tumor was 5 cm, lower rectum. Stage 3 as..." + (show)
@crollins527

I was diagnosed last April 2023, my tumor was 5 cm, lower rectum. Stage 3 as it was in one lump node. My local surgeon did the same thing, wanted to take everything out, put a bag on me for life and then to chemo. All this over the phone, didn't even take time to meet with me and do an exam. Said it was in my spinchter too..made an appointment at Dana Farber in Boston. They read my MRI, PET Scan and bloodwork. Not in my spinchter at all…after a very thorough exam, both the surgeon and oncologist told me..there will be no surgery, we are going to cure you and if you have any surgery done after treatment, it will be done in Boston. I could finally breath again. Fast forward…5 weeks, of radiation along with chemo pills, then IV Chemo every other week for 8 cycles with oxilplatin, and my tumor is gone. Second scan, still gone, Going for my third one next week…If I had listened to my surgeon in my home town, it would have been much worse. Sometimes cutting into a cancer mass can make it spread…so greatful Dana Farber is only 4 hours away. I was able to have all my treatments in my hometown, but my team of heroes are at Dana Farber, who set up my treatments to help me keep my rectum. So far, still have some side effects, but getting better every month...

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What was the mg for your chemo pills during radiation? I’m trying to figure out is 2600mg is a lot / to much

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Moderator
Colleen Young, Connect Director | @colleenyoung | Mar 27 3:01pm
In reply to @9hoursand23minutes "Hi, my husband just diagnosed with 5cm low. We haven’t been given further info except ctscan..." + (show)
@9hoursand23minutes

Hi, my husband just diagnosed with 5cm low. We haven’t been given further info except ctscan no M. Did they check lymph nodes for yours? I’m very nervous. We meet Dana Farber team this week. Thanks.

Jump to this post

@9hoursand23minutes, how are you and your husband doing? Did you find out more at the appointment about the diagnosis and treatment plan?

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