JaneA's Journey with Adenocarcinoma, Colorectal Cancer

Survivor: Colorectal (Colon) Cancer > Adenocarcinoma

Patient Info: Finished active treatment less than 5 years ago, Diagnosed: about 4 years ago, Female, KRAS mutation positive: Don't Know, BRAF mutation positive: Don't Know, Stage IV

  1. 1
    • JaneA
    • Experience with Adenocarcinoma, Colorect...
    8 months ago
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    Just Diagnosed

    Oh No

    It was shocking to be diagnosed with Stage IV rectal cancer because my only symptom was bleeding. My bloodwork was all normal, and my bowel habits were normal. Nothing suggested that I had Stage IV cancer and about to enter the right of my life.

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  2. 2
    • JaneA
    • Experience with Adenocarcinoma, Colorect...
    8 months ago
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    Chemotherapy

    Drug or Chemo Therapy

    I elected not to attend chemo orientation. My oncologist gave me detailed information sheets about each of the four components of my chemo which included how the drugs worked and all of their side effects. I thought that I would just wait and see what side effects I would experience rather than anticipate the worst. I rarely experienced nausea. Fatigue and neuropathy were my major side effects.

    Easy to Do: Disagree
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Strongly Disagree
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  3. 3
    • JaneA
    • Experience with Adenocarcinoma, Colorect...
    8 months ago
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    Targeted therapy

    Drug or Chemo Therapy

    I received Avastin, a targeted therapy that cuts off blood supply to cancerous tumors. It also helps prevent the growth of new metastatic tumors. It is done at the end of the regular chemo infusion. My worst side effect was extremely high blood pressure (195/100) in spite of taking two daily blood pressure medicines. I also experienced almost daily light nose bleeds in the morning.

    Easy to Do: Agree
    Minimal Side Effects: Strongly Disagree
    Minimal Impact to Daily Life: Agree
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  4. 4
    • JaneA
    • Experience with Adenocarcinoma, Colorect...
    8 months ago
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    External radiation

    Radiation

    My oncologist presented my case to the tumor committee after 5 cycles of chemo with targeted therapy. The committee recommended two kinds of radiation. My first radiation was 30 daily pelvic radiation treatments taken along with Xeloda (oral chemo). After that was completed, I received 5 treatments SBRT (Stereotactic Body Radiation Therapy) radiation for the metastatic nodule in my lower right lung. They were much easier in terms of fatigue and overt side effects.

    Painless Experience: Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Agree
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  5. 5
    • JaneA
    • Experience with Adenocarcinoma, Colorect...
    8 months ago
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    Choice between 2 types of rectal resection.

    Decision Point

    My surgeon offered me the option between LAR ( low anterior resection) and APR surgery. The LAR is an "easier" surgery to recover from. The patient receives a temporary ileostomy while the colon and rectum heal and then the ileostomy is reversed restoring bowel function. The APR surgery is the more aggressive of the two surgeries and removes the sigmoid colon, the rectum, the anus, and the buttocks and underlying muscle is sutured together (aka as the Barbie Butt surgery). It was a heart-wrenching decision because I was so afraid of having a permanent colostomy. But after weighing the pros and cons, I chose the APR surgery because it offered the best curative potential. Many people who have reversals experience frequent bowel movements and may be incontinent. Since I had pelvic radiation, there was a possibility that my anal sphincter muscles may have been damaged. I researched the quality of life issues of living with a permanent colostomy and decided that the most aggressive surgery was what was right for me. It's been almost 3 years since that surgery. I have not regretted my decision.

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  6. 6
    • JaneA
    • Experience with Adenocarcinoma, Colorect...
    8 months ago
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    Implant chemotherapy port

    Procedure or Surgery

    Many people are very nervous about getting a port implanted. My colorectal surgeon implanted my port, and I have never had any problems with my port. I still have it 3 1/2 years later. It is still function with port flushes every six weeks.

    Went as Expected: Agree
    Minimal Recovery: Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Agree
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  7. 7
    • JaneA
    • Experience with Adenocarcinoma, Colorect...
    8 months ago
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    Robotically-assisted APR (Abdominoperineal Resection) surgery

    Procedure or Surgery

    APR surgery is the removal of the sigmoid colon, the rectum, and the anus resulting in a permanent colostomy. Even though the surgery was performed robotically, patients still have a perineal wound ( the buttocks and two muscle layers below are sutured together). This makes sitting extremely uncomfortable for six weeks or more. Having this surgery performed robotically definitely spares the patient because my hospital stay and recovery time were much shorter than patients who have an open surgery.

    Went as Expected: Agree
    Minimal Recovery: Neutral/NA
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Disagree
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  8. 8
    • JaneA
    • Experience with Adenocarcinoma, Colorect...
    8 months ago
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    Vaginal stenosis

    Side Effects

    I developed vaginal stenosis after my pelvic radiation. Through the help of a pelvic floor physical therapist and the use of vaginal dilators, I am able to be intimate again.

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  9. 9
    • JaneA
    • Experience with Adenocarcinoma, Colorect...
    8 months ago
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    Home care

    Other Care

    I received home health care after my APR surgery. It was a disappointing experience. My butt wound (pardon my French) needed to be inspected several times a week. They sent a different person for each visit. Having the same person visit each time would have spared me the humiliation of having to explain and show my wound to strangers. I suggest that you talk about how home health will work if you have a new ostomy or a butt wound to avoid the situation that I experienced.

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