Stage 2 - chemo decision help!

lep9035
lep9035 Member Posts: 2 Member
edited November 2022 in Colorectal Cancer #1

Hi all, I found this forum as I’ve been trying to understand if I should be doing chemo or not for my recent diagnosis. I had surgery a few weeks ago after discovering a 7cm tumor in my colon. Presented with some abdominal cramping but big concern was low hemoglobin (8.7) indicating I was bleeding internally. Tumors removed, all margins clear as well as 16 lymph nodes. I have one risk factor around the number of buds on my tumor, 12 (considered high risks if 10 or more). T3, N0, M0 and my CEA was low at 0.7 pre surgery. I do have a small spot on my liver so need to get a MRI but no one is worried that it is related. I was quite surprised to learn that there wasn’t clear guidance on chemo or no chemo. My gut says that I should be doing something vs not… but I’m unsure and my oncologist said it was unclear and my decision. Btw, I’m 43 with 12 yo twins which makes me want to be aggressive with approach but I don’t want to do chemo if it isn’t helpful. If I do it I think the oncologist is recommending 5 FU for 3 months. Appreciate any thoughts and thanks in advance for being out there. This all started for me 4 weeks ago and it’s been a heck of a whirlwind!

Lori

Comments

  • rblakeward
    rblakeward Member Posts: 7 Member
    edited October 2022 #2

    I was a stage 3b with 2 lymph nodes involved - had the surgery and clear margins. CEA dropped right after surgery. I had to do the fol fox chemo because of the staging and nodes - but my oncologist called it " insurance chemo" - basically to make recurrence chance just that much lower - that they probably got it all in surgery , but would probably increase my survival rate by 10-15%

    I got through 10 of 12 cycles - stopped due to neuropathy - and that cleared up after about 9 months.


    Read some more studies on those stage 2 decisions - it's definitely 50/50

  • SandiaBuddy
    SandiaBuddy Member Posts: 1,381 Member
    edited October 2022 #3

    Chemo can have very serious side effects. You might want to pin your oncologist down on what is your chance of recurrence, and what advantage the chemo might give you. . . I would insist on specific numbers, like you have a 10% chance of recurrence without chemo and a 7% chance with. You might also want to get the specific chemo regime (port? Capecitabine? Oxaliplatin?) the doctor would recommend and then research this blog and other sources for details on the potential side effects. For some, chemo is hell. Pubmed is a good resource for technical information. PubMed (nih.gov)

  • beaumontdave
    beaumontdave Member Posts: 1,289 Member
    edited October 2022 #4

    Hi, just reread Sandia's comments, and pretend I said them, lol. My take is, if you can handle it, and aren't at risk otherwise, I'd do it. It didn't stop mets from popping up in my liver twice though, and the neuropathy was annoying/disturbing/linguring and I had less than most. Did it help at all? I'll never know, it didn't stop it all. The thing is also, you can stop it at any time, your young, and if it reoccurs you'll always wonder if the chemo would have made a difference. The percentages aren't way different without chemo, so it all adds up to you reading up on it, asking solid questions about it, and making an informed choice you can abide with............................Dave

  • lep9035
    lep9035 Member Posts: 2 Member

    Thanks all. I do wish there was a clear cut answer on this!! I’ve done some research but it’s just so unclear. I appreciate your input, it helps to hear from experience.

  • SandiaBuddy
    SandiaBuddy Member Posts: 1,381 Member

    It may well come down to a cold cost-benefit analysis. You have already mentioned your intuition, which should play a role, but rationality also has value. Sometimes there is a middle road like capecitabine monotherapy, which would allow you to bail or limit dosage if the side effects were undesirable. That's what I ended up doing, but I still wish I had not.

  • noodgie
    noodgie Member Posts: 9 Member

    Second opinion at Sloan or MD Anderson?

  • runruh
    runruh Member Posts: 5 Member
    edited November 2022 #8

    [Content removed by CSN Support Team.] I was in the same place; however, Cancer spreads and it takes the imaging to find it. Now I have stage 4 and have had surgery on my liver and lung; of course colon but of course..... Chemo only has good data on cancer that has not yet spread; your first shot is your best shot. Chemo is the worst. It is a hell you have never imagined and can never describe.

    If you think your one surgery has got all of it then good luck; with kids that is a hell of a bet

  • Jnap26
    Jnap26 Member Posts: 7 Member

    I chose to do the chemo with a stage 2a diagnosis. I went to two different oncologists who both recommended chemo. I do not regret it.

  • Erica2016
    Erica2016 Member Posts: 47 Member
    edited November 2022 #10

    Ask your oncologist for blood test called Signatera that looks for cancer cells in your blood stream. It was cleared by the FDA last year. It is just more data to have in your decision making. I was also stage 2A when I was first diagnosed, did chemo and had a recurrence 2 years after. best wishes.

  • noodgie
    noodgie Member Posts: 9 Member

    Thank you!

  • noodgie
    noodgie Member Posts: 9 Member

    Thankyou!