Just found out

SeanJohn77
SeanJohn77 Member Posts: 2 *
edited July 2022 in Colorectal Cancer #1

It's difficult for me to position myself as a "survivor" in the context of colon cancer because I just found out a few days ago and I don't even know what stage I'm in, but I am a survivor. I heard the gastroenterologist say the tumor was 2 cm (transverse colon), and the biopsy "shows cancer" (what the GS doctor said) and my CT scan said not metastasized. I have an appointment for a surgery consultation in like 10 days and it's pretty agonizing not knowing the stage at this point. I'm glad I found this resource because doctors seem too busy to reply to non emergency type questions. Any advice or experiences from when you just found out would be really appreciated.

Comments

  • SnapDragon2
    SnapDragon2 Member Posts: 720 Member
    #2

    2nd/3rd opinions are always a good idea.

    Board certified surgeon in CRC.

    Expanded bloodwork beyond standard labs.

    Write down all questions and ask them all. Record consults to review later. There will be things you missed so recording it is a good idea.

    Remember, it is your life and your cancer is unique to you. You have full control of surgery and any treatments.

  • Lily Flower
    Lily Flower Member Posts: 260 Member
    edited July 2022 #3

    Welcome to the board! You won't know the stage after the surgery. They count how many lymph nodes are affected, then determine which stage you'll be in. Since your CT scan says no metastasis, you'll be between stage 1-3. I was stage 3B when diagnosed in 2017. 3 of my lymph nodes were affected out of 21 taken out during surgery. After surgery and 8 rounds of adjuvant chemo treatments, I have been NED (No Evidence of Disease). Good luck on your surgery and treatments. You will be fine.

  • SeanJohn77
    SeanJohn77 Member Posts: 2 *
    #4
    https://csn.cancer.org/discussion/comment/1698538#Comment_1698538

    Thank you so much. Do you remember if your CT scan report showed that lymph nodes were affected? Did you need multiple surgeries? How did they know what kind of surgery to do to determine the stage?

  • Lily Flower
    Lily Flower Member Posts: 260 Member
    #5

    Hi SJ, the CT scan won't show how many lymph nodes were affected. This will be determined by your surgeon after your surgery. I only had 1 surgery, a laparoscopic one. Your colorectal surgeon will contact you and meet with you to discuss what type of surgery you will need.

  • SandiaBuddy
    SandiaBuddy Member Posts: 1,381 Member
    edited July 2022 #6

    It sure must be pretty nerve-wracking to have the worries but not the complete information. All of the comments so far seem right-on. If you have the stomach for it, you can likely find much more information in the CT scan report and biopsy report, which are available online from most providers. If not, you can likely get the reports from your physician's office. But be forewarned, these reports are written for doctors and can sometimes cause unneeded anxiety in the patient.

    I think the recommendation that you have a well-qualified surgeon you trust is essential. I switched surgeons and I am very glad I did. Also, it is sometimes surprising how inaccurate the CT and biopsy are compared to the result of the surgery. They thought my cancer was in a different location from where they found it! It turned out to my advantage, but I was shocked the imaging tools were so crude. Sometimes things come out better than you hoped, sometimes not.

    There seems to be no way to accurately evaluate lymph nodes, other than removing them and testing them. Your initial information seems pretty positive, but you will not know your staging until after the surgery. The recommendation that you keep a notebook and write down the questions for your surgeon is a good one. As many will tell you, it is essential that you be your own advocate in receiving good care.

    The term "survivors" appears in the banner on this site, but it is a term we all pretty much ignore. The site is for people dealing with colorectal cancer who seek information and support. This site is for you. It seems like the initial term was probably "support," but maybe they rejected it to avoid any ambiguity about supporting cancer instead of supporting people. As for me, I think of CSN as the "cancer support network."

    If you are preparing for surgery, it makes sense to be as healthy as possible. Focusing on improving your exercise, sleep and diet might be a good way to keep yourself busy while waiting for more information. I trained for surgery like it was an athletic competition, and it may or may not have helped me, but at least it kept me busy and gave me some sense of control.

    Best of luck to you.

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