Treatment ‘options’

crispy77
crispy77 Member Posts: 7 Member
edited April 2022 in Colorectal Cancer #1

I’m just curious if there are others out there who said no to adjuvant Chemo and how you feel about it now. I’m roughly 5 1/2 months post ileostomy take down and 7 1/2 since the LAR. And I’m kinda plagued by the ‘did I make the right decision?’ I’ve apparently got a new chronic anxiety now, thanks to cancer. I was in no shape for chemo, in my own opinion, after I got reconnected. I was so dehydrated. and now I’m just so chronically tired. I don’t know if I’m still healing, if it’s mental exhaustion or if my cancer did spread. ha, not a great time. My first 3 month scan was ok. My CEA was up pretty high, though.

Comments

  • Real Tar Heel
    Real Tar Heel Member Posts: 307 Member
    #2

    FWIW, I occasionally wish I'd skipped the first round of chemo. I went a couple of months without anything showing on scans after RFA but before chemo. We just don't know, we go with the treatment options presented to us. Generally, I don't look back on the decisions I've made. I try to look forward. The one thing that the history of the disease tells us is that once it spreads it's a hard one to shake. We do what we can.

    Hopefully, people in the future will benefit from newer methods of detecting cancer in the bloodstream.

  • crispy77
    crispy77 Member Posts: 7 Member
    #3
    https://csn.cancer.org/discussion/comment/1696120#Comment_1696120
    https://csn.cancer.org/discussion/comment/1696120#Comment_1696120

    Thank you. My onc talked about a different tumor marker blood test that I cannot remember the name of, but said it’s new & sometimes unreliable so we didn’t do that either. The insurance coverage was questionable and obviously the two surgeries cost me a small fortune. Your profile info is helpful too. I should’ve been on this part of their webpage several months ago. This whole experience is so hard to navigate. So many what if’s. They took 18 lymph nodes, and it turned out it was in 2, but not picked up by the MRI beforehand. I dunno. Thank you for responding. I definitely agree colonoscopies should be way before 40. I’m 44. The told me my kids should have them at 34. I probably had it then, too. Crazy.

  • Real Tar Heel
    Real Tar Heel Member Posts: 307 Member
    #4
    https://csn.cancer.org/discussion/comment/1696123#Comment_1696123

    It's a crime that insurance money should play a role in our treatment options. I looked at the cost of just a scan and I fainted, lol. I told my kids the same about the colonoscopy. I should make them get it tattoed on themselves somewhere. I hope it won't be a problem for them and someone will have sorted a cure for this madness.

    My cancer traveled the bloodstream rather than the lymphatic system, which I think may have lulled all of us into thinking the first surgery would take care of everything. My first colon tumor didn't penetrate the wall. Good luck with everything.

  • SnapDragon2
    SnapDragon2 Member Posts: 720 Member
    #5
    https://csn.cancer.org/discussion/comment/1696123#Comment_1696123

    Some more blood tests (independent) and marker tests:

    CTC lab blood lab test

    Signatera blood lab test

    ca19-9

    ca125

    GGT

    AFP

    LDH 1-5

  • airborne72
    airborne72 Member Posts: 303 Member
    #6

    Crispy77:

    I was diagnosed stage 2 rectal cancer. Underwent the commensurate radiation and 5Fu oral treatment for 5 1/2 weeks. Recovered for six weeks and then underwent the LAR. Four lymph nodes extracted and all were cancer-free but I came out of the surgery with an unexpected ilieostomy. All of that knocked me down physically so we deferred adjuvant chemo for another five weeks. I then managed to complete only three sessions of adjuvant chemotherapy before I tapped out. It was literally killing me. It took me another 3 1/2 months to gain enough strength to undergo the reversal surgery.

    For my first couple of post treatment CT scans I was anxious but then I put it all behind me and focused on living in the moment. I have been NED (no evidence of disease) ever since. Currently enjoying year #5 of remission

    Incidentally, my journey occurred from mid 2017 to mid 2018. During my most recent oncologist appointment he stated that based upon current best medical information/practices that he would not now recommend adjuvant chemo for my situation.

    I was 67 when diagnosed. Age and state of health (other than CRC) plays a big role in the decision-making process.

    It's a "gutsy" decision no matter the circumstances but YOU are always the final decision maker.

    Jim

  • crispy77
    crispy77 Member Posts: 7 Member
    #7
    https://csn.cancer.org/discussion/comment/1696149#Comment_1696149

    Thank you, that is helpful & hopeful. Both the surgeon & onc were pretty disappointed with me. I really do need to change my thinking all the way around. It’s kind of consumed me these last several months.

  • crispy77
    crispy77 Member Posts: 7 Member
    #8
    https://csn.cancer.org/discussion/comment/1696142#Comment_1696142

    Thank you, I think it was the signature she offered. They haven’t done either of the ca tests, but they do the others.

  • suzycruise76
    suzycruise76 Member Posts: 163 Member
    #9

    Hi crispy 77,

    I was in similar situation as you. Diagnosed in January 2019 with colon cancer, chemo/radiation 5 and 1/2 weeks, surgery (colon tumor and total hysterectomy), ileostomy take-down and that was it. I had been offered adjuvant chemo as well, and after giving it thoughts for 2 weeks, I declined it. I was feeling so good, had a feeling that my life is just starting again, plus I had a very strong GUT feeling, that I am going to stay cancer-free. I could not imagine another many months of chemo (Xeloda-the oral chemo),so I risked it.

    I had been pronounced NED at the end of 2019, and I never regretted it for a second! All my CT scans are clean, my blood is back to normal (almost),and no increase in CEA.

    Just recently I had another follow-up appointment with my onco doctor, and I told her, how grateful I am to her, that she had not pushed me to have the adjuvant chemo. I am sure that it would had destroyed me.

    Unfortunately I have a difficult side effect of radiation-it is pelvis fractures, which make my life hard enough.... so, that is enough for me to deal with on daily basis.

    I wish you a peace of mind, and my suggestion is not going back and keep thinking if your decision was right or wrong; it is done, and you just hope that cancer is never going to appear again. I am hoping too, and if I was wrong, I will have to deal with it in future. BTW- I am 79 now.

    All the best,

    Suzy

  • crispy77
    crispy77 Member Posts: 7 Member
    #10
    https://csn.cancer.org/discussion/comment/1696164#Comment_1696164

    Thank you so much for this. I’m so sorry about the ongoing rads side effects. I have a lot of gratitude for the surgeon on duty the evening I was discharged. (Mine did the surgery and then went on vacation lol) They were just discharging me like it was still presumed I was earlier stage, I asked him about the results I’d gotten and what would happen next; he said ‘they’ll probably want you to do radiation and chemo Your margins were clean, I’d think about the radiation before you do it’

    I know in a lot ways the way it all went down might’ve been a godsend. The CT had them telling me pre-chemo; the MRI was nope, all good, just take it out It was the final path report that put me back.

    I felt really positive after my initial surgery about being clear. And I guess I’m not sure what happened beyond feeling like I’m living 3 months at a time.

    thank you so much for your response. It is very appreciated and I hope your scans continue to be free & clear. 🕊

    -Christi

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