u/Sad-Base-9220

Surgeon for second opinion eased my mind

I met with a colorectal surgeon for a second opinion yesterday for my low rectal cancer. He is more prestigious than the first surgeon I saw. He looked at my ctDNA test result during radiation and told me I had a high chance to become a candidate to watch and wait once the whole chemo treatment plan completed in 4 and half month.

He also said in case surgery is needed most likely I wouldn’t need a permanent bag considering my tumor doesn’t involve the sphincter muscles. He said the other surgeon was giving me a political correct answer when I mentioned the other surgeon wasn’t sure about sphincter preserving surgery.

He said he would be able to tell if he could preserve my sphincter by the MRI after chemo treatment. I finished 28 radiation sessions last week and I have 9 rounds of folfox starting August 5th. He said TNT is the standard plan for rectal cancer and surgery is the last resort nowadays. If no surgery and later local regrowth happens, salvage surgery still available to preserve the sphincter and there is no difference on survival rates.

i feel more reassured after seeing him

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u/Sad-Base-9220 — 3 months ago

ctDNA dropped to nearly undetectable during chemoradiation

Hi guys. Low rectal cancer here. My ctDNA before treatment was 35MTM/ml from Exact Sciences. On day 22 of my 28 radiation+oral chemo treatment my ctDNA test showed <0.13MTM/ml. Now it’s been a week since all 28 radiation sessions were done. I will start 9 rounds Folfox in 2 weeks. By the way I was diagnosed with T2N0M0 rectal cancer. What does this ctDNA test result mean? Does it mean my response is good so far? Would love to hear some feedback. Thanks

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u/Sad-Base-9220 — 3 months ago

Starting Chemoradiation Tomorrow….Excited and Nervous

Hi guys. I am starting 5 weeks radiation plus oral chemo tomorrow for my ultra low rectal cancer 4 cm from Anal verge and 0.9 cm from sphincter diagnosed at March 11th. It was staged at T2NxM0 on April 15th. It is either stage 1 or stage 3 due to a couple of 5mm indeterminate lymph nodes. Last scan was a Pet Scan on May 15 showed no spread still. The tumor is 6cm long and 1.8cm thick. It is near circumferential. Moderately differentiated.

Radiation starts tomorrow followed by 9 rounds Folfox. I am excited because after waiting for so long I finally will start treatment but am I also nervous about it. Hopefully the treatment can shrink and eradicate the tumor to avoid surgery or to shrink it enough to have clear distal margin for surgery to avoid permanent bag.

Feel free to share your success stories and suggestion. Thank you guys!

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u/Sad-Base-9220 — 4 months ago

About to start radiation and oral chemo in 2 weeks

Hi guys. I am finally about to start radiation and oral chemo for my low rectal tumor. I was diagnosed in a colonoscopy on March 11. T2N0M0 but the tumor is kind of big. near circumference. 2cm thick and 6.1cm long. It is also low. 4cm from anal verge and 0.9 cm from sphincter.

Staging MRI was on April 15. Since no treatment since then I dont know about the prognosis. Yet I had a PET scan on May 15 showed no prognosis no Met. However there was 2 indeterminate lymph nodes from the MRI on April 15. Pet Scan shows nothing so I am either stage 1 or stage 3 (if the nodes are spread)

My treatment is 28 days radiation and oral chemo followed by 9 rounds Folfox. Hopefully it shrink the tumor and avoid surgery or at least creat enough margin for surgery to avoid a permanent bag. wish me luck and feel free to share your similar stories with me please

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u/Sad-Base-9220 — 5 months ago

Doctor gave me two treatment options and I can’t decide

Hey everyone,

I’ve got T2NxM0 rectal cancer about 4 cm from the anal verge and 1cm to the sphincter. The tumor is 6cm long and 2cm thick. My doctor is recommending TNT (chemo + radiation + surgery), and I get to choose the order.

Option 1 is 28 days of radiation first, then 9 cycles of FOLFOX, then surgery if needed. Option 2 is chemo first, then radiation, then surgery.

I’m mainly trying to avoid a permanent colostomy.

What I’m unsure about is this: if I do radiation first, surgery could end up being like 18–20 weeks later, and I’m worried that long waiting after radiation is done might make sphincter-sparing surgery harder because of fibrosis. With chemo first, surgery happens sooner after radiation done (like 8–12 weeks), but maybe the tumor shrink isn’t as strong.

Has anyone actually had surgery 18-20 weeks after radiation in a TNT plan, and did that timing affect outcomes or sphincter preservation?

Appreciate any real-world experience 🙏

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u/Sad-Base-9220 — 5 months ago

starting chemoradiation treatment in 2 weeks

Hi guys. I’m about to start 5 and half weeks of radiation and oral chemo followed by 9 cycle of Folfox.

My tumor is low rectal T2NxM0. It’s 6cm long and 2 cm thick. circular. 4cm from anal verge and 0.9cm from sphincter (from MRI 4weeks ago)

The goal is to achieve a complete clinical response (eradicated) at the end if not hopefully the treatment shrink the tumor enough for sphincter preserving surgery

Not sure if a complete response is achievable due to the size but hopefully at least it will shrink enough for surgery to avoid a permanent bag. wish me luck!

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u/Sad-Base-9220 — 5 months ago

Is 9 rounds Folfox too much for T1/2NxM0?

I met with Onc today. They wanna do 9 rounds of Folfox. I am T1/T2 low rectal. Two 5mm indeterminate lymph nodes. No distant spread. They said either 9 rounds of folfox followed by 5 1/2 weeks radiation or starting with 5 1/2 weeks of radiation followed by 9 rounds of Folfox. Isn’t 9 rounds too much for my staging? I am also in a debate with sequence. I understand radiation first help shrink the tumor best. but followed by 9 rounds of Folfox means waiting for 18 + weeks for surgery after radiation is done. I heard best surgery window is week 10-16 after radiation is done. Should I choose chemo first then radiation so after radiation I have the perfect window for surgery without waiting for 18+ weeks? Also is 9 rounds fixated or they would evaluate during the course maybe after 4 rounds to see if I needed more?

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u/Sad-Base-9220 — 5 months ago

Hey guys. My low rectal cancer was staged at T2NxM0 on April 15’s MRI. I met with Radiation Onc today he ordered PET scan on next Friday to look at some indeterminate 5mm lymph nodes. Before that he would discuss with my chemo Onc on the sequence of radiation with chemo first or Chemo first. He said both are acceptable. I heard radiation first has an advantage on maximizing tumor shrinkage however he said he usually do chemo first then radiation. I forgot to ask him why. I will meet with my chemo Onc next Wednesday to find out their decision on the sequence. I think chemo first may start the treatment sooner while radiation first needs to take an extra 2 weeks for mapping and simulation. However researches always say radiation first helps shrinking the tumor best so sphincter preservation will become more possible later during surgery. I am hesitant about what sequence is better.

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u/Sad-Base-9220 — 5 months ago

Hi guys. I just got my ctDNA test result. It’s 34MTM/ml. I don’t have any treatment yet. I am T1/2NxM0. N stage indeterminat due to couple of 5mm lateral lymph nodes. What does this ctDNA number mean to my diagnosis. Does it mean the lymph nodes are more than like to be positive or the tumor is already in my blood circulation just not showing any spread yet ? Please help.

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u/Sad-Base-9220 — 6 months ago

Hi guys. How far is your tumor from anal verge? Were/are you able to keep your anus or you had/have to have a permanent bag? I would like to know because mine is 4cm and I want to see if there is anyone in similar situation and how did you end up with ? Feel free to share. Thanks

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u/Sad-Base-9220 — 6 months ago

Hi guys. New rectal cancer patient here. I found out I had rectal cancer in a colonoscopy on March 11, biopsy result confirmed in March 18 then CT found no spread on March 27th. Waited for 2 weeks for MRI until April 14th. Just got staging at T1/2NxM0 last week. Consultation with Oncologist next week to discuss about treatment plan, most likely chemo radiation first. Looks like the treatment will not start until 2 months after initial diagnosis. Is this delay or normal?

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u/Sad-Base-9220 — 6 months ago

Hi guys. T2NxM0 low rectal cancer. N stage indeterminate because of couple of 5mm lateral lymph nodes. They are located outside the mesorectal fascia in the pelvis. The nearby lymph nodes inside mesorectal fascia are all clean. MRI can’t tell they are spread or not. The standard TME surgery does not include the removal of these lymph nodes. Procedure to remove them are very risky due to the location. If they are spread , local reoccurence rates would be way higher. Anyone got experience with this?

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u/Sad-Base-9220 — 6 months ago