jearlesred's Journey with Colorectal (Colon) Cancer

Survivor: Colorectal (Colon) Cancer

Patient Info: Finished active treatment less than 5 years ago, Diagnosed: about 6 years ago, Female, Age: 40, KRAS mutation positive: No, BRAF mutation positive: No, Stage IIIA

  1. 1
    • jearlesred
    • Experience with Colorectal (Colon) ...
    over 4 years ago
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    Initial diagnosis with colon cancer at age 35

    Oh No

    Shock - Not only am I extremely young to experience colon cancer, but no one in my immediate family or otherwise has been diagnosed likewise.

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  2. 2
    • jearlesred
    • Experience with Colorectal (Colon) ...
    over 4 years ago
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    Exploratory Surgery

    Procedure or Surgery

    I was in the hospital for one month following this surgery because of bleeding and negative reactions to drugs.

    Went as Expected: Disagree
    Minimal Recovery: Disagree
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Neutral/NA
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  3. 3
    • jearlesred
    • Experience with Colorectal (Colon) ...
    over 4 years ago
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    Colostomy

    Procedure or Surgery

    One week after my diagnosis, I was admitted into the hospital through the emergency room. I was experiencing vomiting, fevers, diarrhea, nausea, and stomach cramps. After exploratory surgery, my surgeon decided on a colostomy to relieve the symptoms. I was not prepared for how the procedure would affect my daily life. I became extremely self-conscious about my colostomy bag, often feeling sorry for myself. A year later, I was able to have the colostomy reversed - and, as strange as this is to say, I sometimes regret the decision to have it reversed. Because of radiation damage, going to the bathroom is often painful and encompasses much of my time and thoughts.

    Went as Expected: Agree
    Minimal Recovery: Disagree
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Strongly Disagree
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  4. 4
    • jearlesred
    • Experience with Colorectal (Colon) ...
    over 4 years ago
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    Nephrostomy

    Procedure or Surgery

    My tumor impacted my ureter, causing urine to backflow into my kidney. The nephrostomy was a constant problem. I experienced frequent UTIs, fevers, and pain. In my opinion, the nephrostomy was left in too long even after the tumor shrank. It seemed that since this was a kidney/urinary tract problem that my GI doctors were unwilling to address these problems. They were all too willing, however, to prescribe me pain medicine.

    Went as Expected: Neutral/NA
    Minimal Recovery: Disagree
    Minimal Side Effects: Strongly Disagree
    Minimal Impact to Daily Life: Strongly Disagree
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  5. 5
    • jearlesred
    • Experience with Colorectal (Colon) ...
    over 4 years ago
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    Implant chemotherapy port

    Procedure or Surgery

    I'm very glad to have my port.

    Went as Expected: Strongly Agree
    Minimal Recovery: Strongly Agree
    Minimal Side Effects: Strongly Agree
    Minimal Impact to Daily Life: Strongly Agree
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  6. 6
    • jearlesred
    • Experience with Colorectal (Colon) ...
    over 4 years ago
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    Chemotherapy

    Drug or Chemo Therapy

    The first several treatments were very easy. After these first few treatments, however, I began to experience extreme nausea, vomiting, and the occasional fever. I also began to experience neuropathy in my hands and feet - this side effect has continued.

    Easy to Do: Agree
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Disagree
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  7. 7
    • jearlesred
    • Experience with Colorectal (Colon) ...
    over 4 years ago
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    External radiation

    Radiation

    I received my treatment at a facility about an hour away from my house. I stayed at the American Cancer Society's Hope Lodge and am very grateful for that. The procedure itself was easy and only took a few minutes each day. I became nauseous and didn't feel like eating that much. Following the reversal of my ileostomy, I discovered that I had radiation damage in my rectum. This has severely impacted my daily life - it is very painful to use the bathroom and my diet has because extremely limited. Another major issue I'm having is that pelvic radiation can cause vaginal stenosis. In order to prevent this, I have to use a vaginal dilator every other day for the rest of my life. This can be painful and is also emotionally stressful.

    Painless Experience: Agree
    Minimal Side Effects: Strongly Disagree
    Minimal Impact to Daily Life: Disagree
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  8. 8
    • jearlesred
    • Experience with Colorectal (Colon) ...
    over 4 years ago
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    Colon surgery (colectomy or hemicolectomy)

    Procedure or Surgery

    Following chemotherapy and radiation, the grapefruit sized tumor in my colon shrank down to nothing. My surgeon removed about a foot of my colon, took down my colostomy, and gave me an ileostomy so that the surgery site would have time to heal. The only problem I had was with the ileostomy - I was told I could eat whatever I wanted, but, as it turns out, the fiber I was eating caused me to have frequent bowel movements and to become extremely dehydrated. I spent a week in the hospital and, following my release, went on a low-fiber diet.

    Went as Expected: Agree
    Minimal Recovery: Disagree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Agree
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  9. 9
    • jearlesred
    • Experience with Colorectal (Colon) ...
    over 4 years ago
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    Hysterectomy

    Procedure or Surgery

    Since my tumor was so large and because the radiation therapy pushed me into early menopause, my doctor and I decided I would also have a hysterectomy. The major issue I'm having is that my vagina is now much shorter that it used to be.

    Went as Expected: Agree
    Minimal Recovery: Agree
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Agree
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  10. 10
    • jearlesred
    • Experience with Colorectal (Colon) ...
    over 4 years ago
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    Ileostomy reversal

    Procedure or Surgery

    I was given an open wound with the ileostomy reversal (which is strange because the same doctor gave me a closed would with my colostomy reversal). Caring for the open wound was tedious, but otherwise problem-free. My main issue is with the discovery that my rectum was extremely damaged from the radiation and that, with the ileostomy reversal, I would now have to deal with this problem.

    Went as Expected: Strongly Agree
    Minimal Recovery: Agree
    Minimal Side Effects: Strongly Agree
    Minimal Impact to Daily Life: Strongly Disagree
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  11. 11
    • jearlesred
    • Experience with Colorectal (Colon) ...
    over 4 years ago
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    Hyperbaric Oxygen Therapy

    Other Care

    Because of the radiation therapy, my rectum is extremely damaged. It is very painful to use the bathroom. I am going through 40 oxygen therapy treatments. Fingers crossed.

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  12. 12
    • jearlesred
    • Experience with Colorectal (Colon) ...
    over 4 years ago
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    Oh No

    On April 26, I started to experience some nausea and I couldn't keep my supper down. Same experience on that Saturday and Sunday, although on Sunday, I had a fever that topped out at 101.7. I planned to go to my cancer center the next day to get some blood and urine cultures done and I fully expected to find that I had a UTI. As it turns out, after a CAT scan, we found I had two abscesses, one of which was accessible to a drain. The following day the drain was inserted and I had a gastrografin enema as well, just to make sure I didn't have any leaks. Although, since radiation ended last July, my colectomy last September, and my ileostomy last November, even my doctors didnt see this as a feasible possibility. We were wrong. I do have leak in my colon and as the fluid output from the drain turned brown, we knew it was also infected. I have never heard of developing a leak this far out from treatment, but there you have it. As treatment, I had a colostomy put in on Friday. This will be the third ostomy in general and my second colostomy specifically. The plan is that we leave it in for at least three months before reversing it again.

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