deena's Journey with Carcinoid Tumor, Colorectal Cancer

Patient: Colorectal (Colon) Cancer > Carcinoid Tumor

Patient Info: Finished active treatment less than 5 years ago, Diagnosed: over 5 years ago, Female, Age: 59, KRAS mutation positive: Don't Know, BRAF mutation positive: Don't Know, Stage III

  1. 1
    • deena
    • Experience with Carcinoid Tumor, Colorec...
    over 5 years ago
    deena's Avatar

    Diagnosed

    Oh No

    Hi. My name is Deena. I'm a 53 year old single woman who lives alone. I had a colonoscopy yesterday for the first time. It was prompted by two tests that said I had blood in my stool. After the first test, I noticed the blood. After the colonoscopy procedure, the doctor looked very concerned and told me he thinks I may have cancer (there is a lesion). After the biopsy, he called me a couple of hours ago to confirm it is cancer. He instructed me to call the hospital to get lab work and a CT and gave me the number of a surgeon. I called the lab immediately and they are waiting for the order from the doctor. I'll call back in a bit. Of course, I am scared to death. My elderly parents live in Ohio and I live in Illinois. My dad has early dementia and heart problems. My mom is fully blind in one eye and partially blind in the other eye due to a non-cancerous pituitary tumor. Their world revolves around me and I do my best to make sure they get the care they need and call them every other day to cheer up their day. I'm supposed to fly to Ohio this Friday (16th) to spend the holidays with them and they are so happy I am coming. I may have to delay the trip to get all the labs and doctor appointments done before Christmas. I don't know how to tell them. I can't stand the thought of hurting them since they are so fragile. I think I will wait until tomorrow to tell them but I'm afraid I will break down on the phone and that will crush them. My dad is probably the most fragile when it comes to me. Mom is my best friend and she is stronger since she has gone through a lot with her tumor. I don't want to put that burden to fall on her to tell him. If I cry when I talk to them, it will really frighten them. Not sure how I should tell them. I will try my best not to cry but just worrying about their reaction makes me cry. Any suggestions on how I should break the news to them? I am going to schedule the labs and CT scan. Can someone tell me what those entail? Especially the CT scan? Also, once those are complete, what should I expect when I meet with the surgeon I haven't seen yet? What happens at the appointment after she gets my lab and CT results? Thanks sooo much for any answers you can give me. I am a little in shock right now and I am more than a little afraid. Deena

    3 Comments
  2. 2
    • deena
    • Experience with Carcinoid Tumor, Colorec...
    over 5 years ago
    deena's Avatar

    Diagnosed

    Oh No

    Hi everyone. I think I am over the shock of being diagnosed. I had my CT scans which were much easier than I thought. Met with the surgeon yesterday and I really like her. I still haven't told my parents the whole story yet (that I have cancer). I'm flying to Ohio tomorrow to spend the holidays with them. I've told them I have a lesion that must be removed from my colon. Yesterday, I told Mom I was going to have to have some of my colon removed. I'm not sure they have figured the whole thing out yet but I will give them the whole story when I see them. Baby steps... I am going to schedule the surgery for January 13 (Friday, the 13th!!). The surgeon seems very upbeat so she is making it easier for me. I've been able to talk to my boyfriend (who lives in another state) on the phone without crying. He's even managing to make me laugh. He wants to come and be with me for the surgery. My dad wants to come and stay with me for the surgery too but I think I will ask dad to stay with me at home when I get out of the hospital. Think that will be my plan. I've also told several of my close friends (who live in different states, of course) and they are so supportive and want to come here and help me. So nice to know they would do that. This forum has really helped me see I am not alone. Thank you all.

    0 Comments
  3. 3
    • deena
    • Experience with Carcinoid Tumor, Colorec...
    over 4 years ago
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    Colon surgery (colectomy or hemicolectomy)

    Procedure or Surgery

    This person has yet to add any details about this experience.

    Went as Expected: Disagree
    Minimal Recovery: Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Neutral/NA
    0 Comments
  4. 4
    • deena
    • Experience with Carcinoid Tumor, Colorec...
    over 4 years ago
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    Implant chemotherapy port

    Procedure or Surgery

    This person has yet to add any details about this experience.

    Went as Expected: Agree
    Minimal Recovery: Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Agree
    0 Comments
  5. 5
    • deena
    • Experience with Carcinoid Tumor, Colorec...
    over 4 years ago
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    Chemotherapy

    Drug or Chemo Therapy

    This person has yet to add any details about this experience.

    Easy to Do: Neutral/NA
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Strongly Disagree
    0 Comments
  6. 6
    • deena
    • Experience with Carcinoid Tumor, Colorec...
    over 4 years ago
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    Anemia (low red blood cell counts)

    Side Effects

    This person has yet to add any details about this experience.

    0 Comments
  7. 7
    • deena
    • Experience with Carcinoid Tumor, Colorec...
    over 4 years ago
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    Chemo brain

    Side Effects

    This person has yet to add any details about this experience.

    0 Comments
  8. 8
    • deena
    • Experience with Carcinoid Tumor, Colorec...
    over 4 years ago
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    Constipation

    Side Effects

    This person has yet to add any details about this experience.

    0 Comments
  9. 9
    • deena
    • Experience with Carcinoid Tumor, Colorec...
    over 4 years ago
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    Confusion

    Side Effects

    This person has yet to add any details about this experience.

    0 Comments
  10. 10
    • deena
    • Experience with Carcinoid Tumor, Colorec...
    over 4 years ago
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    Eating problems (anorexia)

    Side Effects

    This person has yet to add any details about this experience.

    0 Comments
  11. 11
    • deena
    • Experience with Carcinoid Tumor, Colorec...
    over 4 years ago
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    Depression/Anxiety

    Side Effects

    This person has yet to add any details about this experience.

    0 Comments
  12. 12
    • deena
    • Experience with Carcinoid Tumor, Colorec...
    over 4 years ago
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    Diarrhea

    Side Effects

    This person has yet to add any details about this experience.

    0 Comments
  13. 13
    • deena
    • Experience with Carcinoid Tumor, Colorec...
    over 4 years ago
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    Fatigue (tiredness)

    Side Effects

    This person has yet to add any details about this experience.

    0 Comments
  14. 14
    • deena
    • Experience with Carcinoid Tumor, Colorec...
    over 4 years ago
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    Hand foot syndrome

    Side Effects

    This person has yet to add any details about this experience.

    0 Comments
  15. 15
    • deena
    • Experience with Carcinoid Tumor, Colorec...
    over 4 years ago
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    Flu-like symptoms (fever, chills, sweats)

    Side Effects

    This person has yet to add any details about this experience.

    0 Comments
  16. 16
    • deena
    • Experience with Carcinoid Tumor, Colorec...
    over 4 years ago
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    Hair loss (alopecia)

    Side Effects

    This person has yet to add any details about this experience.

    0 Comments
  17. 17
    • deena
    • Experience with Carcinoid Tumor, Colorec...
    over 4 years ago
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    Hot flashes

    Side Effects

    This person has yet to add any details about this experience.

    0 Comments
  18. 18
    • deena
    • Experience with Carcinoid Tumor, Colorec...
    over 4 years ago
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    Low platelet counts (thrombocytopenia)

    Side Effects

    This person has yet to add any details about this experience.

    0 Comments
  19. 19
    • deena
    • Experience with Carcinoid Tumor, Colorec...
    over 4 years ago
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    Low white blood cell counts (neutropenia)

    Side Effects

    This person has yet to add any details about this experience.

    0 Comments
  20. 20
    • deena
    • Experience with Carcinoid Tumor, Colorec...
    over 4 years ago
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    Memory changes

    Side Effects

    This person has yet to add any details about this experience.

    0 Comments
  21. 21
    • deena
    • Experience with Carcinoid Tumor, Colorec...
    over 4 years ago
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    Mood changes

    Side Effects

    This person has yet to add any details about this experience.

    0 Comments
  22. 22
    • deena
    • Experience with Carcinoid Tumor, Colorec...
    over 4 years ago
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    Nausea/Vomiting

    Side Effects

    This person has yet to add any details about this experience.

    0 Comments
  23. 23
    • deena
    • Experience with Carcinoid Tumor, Colorec...
    over 4 years ago
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    Nerve damage (peripheral neuropathy)

    Side Effects

    This person has yet to add any details about this experience.

    0 Comments
  24. 24
    • deena
    • Experience with Carcinoid Tumor, Colorec...
    over 4 years ago
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    Skin changes

    Side Effects

    This person has yet to add any details about this experience.

    0 Comments
  25. 25
    • deena
    • Experience with Carcinoid Tumor, Colorec...
    over 4 years ago
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    Taste change/loss

    Side Effects

    This person has yet to add any details about this experience.

    0 Comments
  26. 26
    • deena
    • Experience with Carcinoid Tumor, Colorec...
    over 4 years ago
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    Thinking problems

    Side Effects

    This person has yet to add any details about this experience.

    0 Comments
  27. 27
    • deena
    • Experience with Carcinoid Tumor, Colorec...
    over 4 years ago
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    Weight loss

    Side Effects

    This person has yet to add any details about this experience.

    0 Comments
  28. 28
    • deena
    • Experience with Carcinoid Tumor, Colorec...
    over 4 years ago
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    Finished treatment

    Celebration

    This person has yet to add any details about this experience.

    0 Comments
  29. 29
    • deena
    • Experience with Carcinoid Tumor, Colorec...
    over 4 years ago
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    Remission

    Celebration

    This person has yet to add any details about this experience.

    0 Comments