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

I am so sorry you are going through this. It is a roller coaster of emotions. I, too, was diagnosed with stage 3 colon/rectal cancer in April, 2014.
I had 28 rounds of radiation with a 5fu pump. I then had surgery which showed no sign of cancer but I still had to have the temporary ileostomy (which I despised).
I then had 8 rounds of Oxaliplatin and then the reversal of the Ileostomy. I was never so thankful to hear Dr. Hunt say that he heard "bowel sounds".
My surgeon was Dr. Steven Hunt at Barnes Hospital in St. Louis. He was amazing. I remember him saying "we can get this".
Be aware of the Oxaliplatin. It has left me with Peripheral Neuropathy that seems to be getting worse. I was told it could do nerve damage and it did. Still having issues 10 years later.

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...

So glad you are cured, but worry about the neuropathy. My story is very similar to yours, diagnosed in April 2023, all the same treatment, and it is gone. I did not have any surgery, but I still have side effective (7 months out from treatment)..hand and feet neurophathy and lots of bowel movements every day…hope it subsides over time. So sorry you are still having issues with it.

@nildam, I'm tagging @gabriel74 to make they saw your post and the other helpful posts from fellow members.

Gabriel, how are you doing?

It is a difficult time attempting to take in all the information that is thrown at newly diagnosed cancer patients.

I would continue to get recommendations from friends, nurses, doctors, online reviews, etc, for who to see to get second and third opinions. Develop list of questions and take notes. I recommend having someone that you trust "sit in" with your visits to each doctor. ( put your cell phone on desk, select speaker option during visit)

I had stage three colon cancer and was also given the the option after chemo/radiation to get surgery.

I was fortunate that my cancer went into full remission after 4 rounds of chemo and short course radiation, no detectable signs of cancer. Pathological complete response. PCR . Studies indicate that pathological complete response can vary between 15 to 30%

I am currently following a watch and wait protocol of twice per year MRI and PET scans and yearly colonoscopy. I did not have surgery.

Neuropathy is a common feature of oxiplatin chemo. Several drugs ( like pregabalin) can reduce the pins and needles aspect but not numbness. Good support/ cushioning shoes are also helpful. I wear Hoka shoes in and out of the house

Not all doctors are comfortable with the watch and wait approach. Good luck.

"It is a difficult time attempting to take in all the information that is thrown at newly diagnosed cancer patients."

It's like trying to get a drink from a firehose - so much hitting all at once, much of which is confusing to the patient

I recommend having a trusted person go along to sessions discussing treatment options since there is so much to learn/understand.

As noted in the previous post (rephrased a bit), learn as much as you can from reliable sources. Knowledge helps dispel fear.

Some insurance companies offer assistance with major medical decisions,
The insurance company or your company may have add on benefits may provide the option for remote second opinions or trained staff to help through these difficult decisions.
You will need to ask since these type of guidance programs are not always are offered automatically.

https://www.nccn.org/patients/guidelines/content/PDF/colon-patient.pdf
this link will take you to NCCN site. Basic information on colon cancer that is helpful.

You may need to register, but its free.

National Comprehensive Cancer Network (NCCN)

I would recommend adding a trusted family member or knowledgeable friend to your file in the doctor's office that allows the doctor to discuss or disclose medical information.

I would also recommend filling out a medical directive form for your specific state.

@gabriel74 Have you been able to get a second opinion?