Effiemae's Journey:

Patient: Eye Cancer

Patient Info: Living with cancer as a chronic illness (undergoing adjuvant therapy), Diagnosed: over 5 years ago, Female, Age: 72

  1. 1
    almost 5 years ago
    Effiemae's Avatar

    Misdiagnosed

    Oh No

    I have been faithful about eye checkups, and the optometrist I had been seeing for the past seven years told me that I had cataracts in both eyes and were ready to be treated. In the meantime, I had begun losing vision in my left eye and was having bright flashing lights. I made an appointment with an opthamologist to make arrangements to have surgery. When he examined my eyes he told me he was a little confused because I had cataracts of equal size in both eyes, but the cataract in my right eye was not giving me any vision problems. I specifically asked him if I had a detached retina in my left eye, and he said definitely not. He also noted that my left eye was "bulging," but he wouldn't know what was going on until he removed the cataract. He also told me that he "didn't see anything seriously wrong." Some sixth sense told me not to have the surgery, and my vision continued to go. The flashing lights became so severe that I went to the ER at a local hospital on the weekend, and a resident told me that I DID have a detached retina and should see a specialist immediately. When I went for my appointment with the retina specialist, it took him about five minutes to determine that I had a very large choroidal melanoma in my left eye and made arrangements for me to go to another facility since my condition cannot be treated in my state. By this time, the tumor was so large that the only recommendations I could get were to remove my eye, which left me feeling devastated.

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  2. 2
    almost 5 years ago
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    Surgery

    Procedure or Surgery

    In July I went to the University of North Carolina for treatment, and the ocular opthamologist told me my tumor was one of the largest he had ever seen. When he operated, he found that the tumor had become necrotic and barely found enough tissue to send away for testing. There are two types of this cancer, Type 1 and Type 2. Type 1 rarely metastasizes, but Type2 does and it usually shows up in the liver first. To make matters worse, the oncologist I had been seeing has not done another PET scan in seven months nor has he done any blood work. On my last visit, I did not even see him and talked to his nurse instead because he was "busy." I questioned the length of time between PET scans, and the message he sent back to me was to make another appointment for two months. I immediately walked out of his office, called my primary doctor and asked him to refer me to another oncologist. I hope that I will see him within the next two weeks. The bad part is that I cannot even get an appointment for a prosthesis until October 4, which seems an eternity away.

    Went as Expected: Agree
    Minimal Recovery: Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Strongly Disagree
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  3. 3
    almost 5 years ago
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    none

    Drug or Chemo Therapy

    At this point I am receiving no other treatment.

    Easy to Do: Not Specified
    Minimal Side Effects: Not Specified
    Minimal Impact to Daily Life: Not Specified
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  4. 4
    almost 5 years ago
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    Body part/function

    Loss

    I have been through quite a bit physically during my life, starting with polio at age four. In 1998 I was burned over 30% of my body and spent almost three months in a burn center. Prior to that I had surgery on my right foot and developed a staph infection which went into gangrene, and I had to have three toes on my right foot removed. I have also broken a hip and live with chronic pain every single day of my life. Losing body parts, whether it be toes or an eye, is hard to deal with, and there are times when I feel like a freak, I finally had my eye enucleated on July 27, and I have been really down. I cannot get the prosthesis until October 4, and I hope that will help. I finally found a GREAT doctor at UNC in Chapel Hill, NC, and I would recommend him to anyone. I have been feeling awful since May and just spent eight days in the hospital due to kidney infection, dehydration and sleep deprivation. I still don't have the results as to what type of eye cancer I have...I'm not sure I want to know.

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  5. 5
    almost 5 years ago
    Effiemae's Avatar

    To have my eye removed.

    Decision Point

    I think I went through the longest period of denial in history and was frantic to save my eye, even though I had no sight in it. I saw four doctors altogether, and they all gave me the same answer. Finally, I came to terms with it and realized that if I wanted any chance at life I had to do it. It is probably the hardest thing I have ever had to do, but now that it is done I feel some sort of peace. I don't know what the future holds, but the thought of not seeing my grandchildren grow up is devastating.

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  6. 6
    almost 5 years ago
    Effiemae's Avatar

    None

    Other Care

    During this ordeal, I have had very little emotional or financial support from my family. Their only concern is to find the cheapest route "to fix the problem," and I rarely hear anything from any of them. I don't think I have ever felt this alone in my life. When I went for my surgery, it was too inconvenient for anyone in my family to go with me, and if it had not been for some very good friends I do not know what I would have done. What's that saying? "A good friend is God's apology for family," and I have found that to be so true. I know I sound bitter, but I really am not. I just feel very scared and very sad.

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