Stage 2 T3B questions.

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indianamatt
indianamatt CSN Member Posts: 8 Member
in Colorectal Cancer #1

Diagnosed with stage 2 T3B last week and has not entered my lymphs. Will start the chemo pill with radiation in a week for 33 sessions then full chemo only every 2 weeks for 8 weeks.

The Cancer Center said the outlook is very good for shrinking and killing the 5cm tumor near my rectum. Received a call from a surgeon the other day whom I have never met and only gave me a 50% chance of remission and I may need a lifelong colostomy. I am at loss for words and now moderately depressed.

Why would the Cancer Center give me a great prognosis only to hear a negative one from a doctor? I could tell he knew nothing about my situation or the planned treatment prior to the phone call as he was asking me questions about the recommended treatment.

Any comments would be much appreciated. Thanks…

Comments

  • amarinack
    amarinack Member Posts: 1 *
    #2

    Have you had any more support or information from your doctor? My family is facing a similar recent diagnosis and very difficult to receive info to feel confident in from the doctors. Seems like they see so many patients every day that it is easy to auto-pilot stats and treatment plans without taking time to explain the risks or possible positive outcomes.

    I hope the info received here is helpful and give you some hope, being realistic is one thing and understanding the good that you can have in life is another very important thing to consider.

    In searching for similar info after a t3b diagnosis, pretty unsuccessful here so far….will share if I come up with anything helpful. Please do keep us posted as well.

  • indianamatt
    indianamatt CSN Member Posts: 8 Member
    #3

    I have had an enormous amount of care here at IU in Muncie, IN. The very first thing my Doctor at IU told me was we are going to protect your anus and cure you of this decease. The protocol in the past has always been surgery because that's what surgeons do, cut and remove not cure.

    I have read may a survivors story that stated they went into surgery for removal of the tumor but 'may' wake up with a perm colostomy if the margins are not clear.

    I also found the info on T3B scarce which I feel is due to the success of Chemo/Rad then full chemo.

    I have included a couple of links you should watch since they did make me feel more at ease through this struggling times.

    https://www.youtube.com/watch?v=JaurBJUcTSg

    https://www.mskcc.org/news/how-watch-and-wait-approach-may-help-people-rectal-cancer-preserve-their-quality-life

  • Axel7
    Axel7 Pre-Moderated Member, CSN Member Posts: 16 New User
    #4

    When I was diagnosed I met with and oncologist who seemed to want to keep me in chemo forever after meeting me for may 3 minutes. I spoke with some people who had gone through a similar diagnosis, I met with several oncologists and settled on a different one. I am not saying keep meeting with different doctors until you hear what you want to hear, but I have found you should not be afraid to take control of your health care. I would suggest getting a second opinion and maybe a third, if they all say the same thing well then you know.

  • greengrass42
    greengrass42 CSN Member Posts: 3 Member
    #5

    Was Staagee 2+ with a 10cm tumor 17 cm from the anal verge. 7 weeks of oral-chemo-radiation. 8 chemo infusions + 42 hour of home infusion. My colonoscopy 10 weeks after finish of chemo shows no tumor.

    Maybe no surgery. Will know in a couple of days.

  • indianamatt
    indianamatt CSN Member Posts: 8 Member
    #6

    Thanks for the comment greengrass42, it was encouraging new for me. Mine is 3.7CM long, 1CM from the dental line. I finished up the 28 radiation treatments in April and just finished my 4th of 8 infusions + 46 hours of take home pump. I am told by multiple OC and Radiation staff that stage 2 is very curable for a complete clinical response without surgery however you don't see many posts on this site reflecting that.

    Keep me posted on your follow ups, Matt…

  • greengrass42
    greengrass42 CSN Member Posts: 3 Member
    #7
    https://csn.cancer.org/discussion/comment/1723238#Comment_1723238

    One thing you should know about that the Dr.'s may not have informed you about: CIPN Chemotherapy Induced Peripheral Neuropathy. In my case, about 8 weeks after I finished my chemo, I developed "pins and needles" in my fingertips and almost total loss of touch in my feet and ankles. The 8 weeks or so between finish of chemo and the onset of CIPN is called "coasting". CIPN may resolve itself after 5 months or so. In some individuals the neuropathy can be permanent.

    Not meaning to add another worry as it may not happen. Just a heads up of what may happen.

    Does your chemo include Oxaliplatin?

  • indianamatt
    indianamatt CSN Member Posts: 8 Member
    #8

    Hello Greengrass42,

    My neuropathy started after the very first chemo infusion 2 days later. It goes away around 5 days later. Yes, Oxaliplatin is one of the chemo medicines I am infused with.

    Ironically, my last infusion the 16th of June, I had no diarrhea or upset stomach which was common during the first 3 treatments which caused me to loose 25 lbs. I have gained 10 of it back already by eating everything in sight.

    Keep me updated on what they find with your follow up and thanks for the most recent post.

    Matt…

  • greengrass42
    greengrass42 CSN Member Posts: 3 Member
    #9
    https://csn.cancer.org/discussion/329034/stage-2-t3b-questions

    I just reread your first post. My surgeon, who was the first cancer Dr I spoke with, had similar views on colostomy bags and surgery. At the UofM cancer center they have a cancer board that decides on your treatment path. I had a specialists radiation Dr. for the 7 weeks of radiation. I saw ham once a week during that time. Then a oncologists for the chemo period and the post chemo period. An MD/PhD did the final colonoscopy with resection of polyps and biopsy of scar tissue. I meet with the surgeon next week. He may still want to cut but I was advised after the biopsy result by that Dr to avoid unnecessary surgery". The surgeon is only a small part of the treatment team. Listen to your oncologists

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