Ameyc2's Journey:

Survivor: Endometrial (Uterine) Cancer > Carcinoma > Endometrioid Adenocarcinoma > Clear-Cell Carcinoma

Patient Info: Finished active treatment more than 5 years ago, Diagnosed: over 9 years ago, Female, Age: 62, Stage I

  1. 1
    • Ameyc2
    • Experience with Clear-Cell Carcinoma, E...
    almost 4 years ago
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    Work problems

    Oh No

    I was working as a program manager for Child Protective services when I was diagnosed at age 52, there were a lot of budget cuts being implemented and more looming and staff shortages adding to an already long stressful schedule.

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  2. 2
    • Ameyc2
    • Experience with Clear-Cell Carcinoma, E...
    almost 4 years ago
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    Surgery

    Procedure or Surgery

    The recovery time was so much longer than I expected although I was in athletic shape going in it took a couple of months and I had to deal with infection at the entry site. Mentally and emotionally I was not prepared for what was going on with my body. And I was in a state of shock to begin with. I had an infection at the incision site which delayed chemo for several weeks

    Went as Expected: Disagree
    Minimal Recovery: Disagree
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Strongly Disagree
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  3. 3
    • Ameyc2
    • Experience with Clear-Cell Carcinoma, E...
    almost 4 years ago
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    Chemotherapy

    Drug or Chemo Therapy

    Having to rely on my daughter to take me to and from treatment was very difficult as I have always been so independent and I was really really uncomfortable allowing her to see me so vulnerable. It was hard because I have always felt I needed to be the strong one showing by example....Being a single mother I wanted her to feel she could achieve anything. To see me like this was I felt I had failed in some way, getting sick. A lesson for me to learn!

    Easy to Do: Strongly Disagree
    Minimal Side Effects: Strongly Disagree
    Minimal Impact to Daily Life: Strongly Disagree
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  4. 4
    • Ameyc2
    • Experience with Clear-Cell Carcinoma, E...
    almost 4 years ago
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    Internal radiation

    Radiation

    I had external as well. Because I was diagnosed with clear cells the doctors decided to go with an aggressive treatment approach. After the radical hysterectomy removing ovaries, uterus and F/tubes as well as twenty five lymph nodes, I started Chemo, six treatments over a period of six months depending on blood cell count, external radiation daily (week days) for five weeks then three high dose booster internal radiation treatments. The burning of the skin from the inside out and blistering was hard to manage and also interfered with daily life. I was already having trouble with my bowel due to the treatment. I still have issues relating to tissue damage from the radiation. The tissue in the vault is very fragile due to the onset of menopause and the scar tissue from treatment so I bleed very easily and on a daily basis. It makes using the vaginal dilator very difficult and uncomfortable even after five years it doesn't get it better. But I'm alive :-)

    Painless Experience: Disagree
    Minimal Side Effects: Strongly Disagree
    Minimal Impact to Daily Life: Strongly Disagree
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  5. 5
    • Ameyc2
    • Experience with Clear-Cell Carcinoma, E...
    almost 4 years ago
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    Bladder problems

    Side Effects

    During treatment the puffiness from the steroids and feeling heady all the time and like I was going to throw up made it difficult to work. I continued to work 20-30 hours a week which helped take my mind off everything at times. After treatment, for the first three years I had ongoing bladder problems bleeding from the bowel and bladder. I had lost almost all control over my bowel and eventually was forced to retire. Hair loss during treatment was fun at the beginning but then with the puffiness from the steroids and feeling ill and throwing up it just added to the overall feeling of despair. I couldn't believe I was ever going to feel normal again. You have to get used to an entirely different body after having the same one for so long knowing every little feeling and what it meant. I felt like I had been given some one else s body to live with. I was amazed at how strange that was and just longed to feel like my old self again. That was the hardest of all for me to deal with.

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  6. 6
    • Ameyc2
    • Experience with Clear-Cell Carcinoma, E...
    almost 4 years ago
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    Finished treatment

    Celebration

    I was so excited about the end of treatment approaching as I had set my sites on that being a goal. Being goal oriented it gave me something to focus on.. my hair was growing back and I started to lose the puffiness from the steroids. I was so happy to be alive and receiving good news on my follow up tests. I retired early due to bowel and bladder problems getting in the way of working so I went on a two year trip around Australia. I bought an old van and rented my place. I came back for periods in between and had a doctor follow up with me also in Australia (free health care). It was difficult with the health problems I was having and not having any health insurance but the trip was good for my spirit. I needed to find myself again and discover a new chapter for my life. I was having a difficult time finding meaning and purpose and just the feeling it can all just change so quickly. Feeling a loss of control was difficult in addition to living with menopause and getting older. It's been a long process and still continues. I don't think you ever stop living with Cancer.

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  7. 7
    • Ameyc2
    • Experience with Clear-Cell Carcinoma, E...
    almost 4 years ago
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    Body part/function

    Loss

    I don't have a partner so I have no idea what intimacy issues there may be but having to use the vaginal dilator on a regular basis is indcation that the experience is going to be uncomfortable painful and that there will almost certainly be bleeding and pain. This makes me very sad as I have always enjoyed a healthy experience and attitude toward intimacy and sharing. I miss that and miss having a partner.

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  8. 8
    • Ameyc2
    • Experience with Clear-Cell Carcinoma, E...
    almost 4 years ago
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    Loss

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

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  9. 9
    • Ameyc2
    • Experience with Clear-Cell Carcinoma, E...
    almost 4 years ago
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    Decision Point

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

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  10. 10
    • Ameyc2
    • Experience with Clear-Cell Carcinoma, E...
    almost 4 years ago
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    Not sure what this means but you are making decisions every day differently then you would have before cancer and treatment.

    Decision Point

    The decision to retire early has impacted my life tremendously due to financial struggles and not having health insurance. I pay $60 for a doctor and $25 for lab work now yearly. They takes tests including CA125 which is really the only gauge I have to determine if I am still cancer free. I have tried finding work part time but with bladder and bowel issues so unpredictable I am so stressed out at the thought of losing control at any time and feel depressed at times with worry and stress....Diet choices and alcohol consumption and stress level and exercise all issues you have to deal with that have the possibility of impacting your life for good or bad. Being alone is the hardest. Although, I enjoy my solitude immensely being able to share and talk sometimes would be nice.

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  11. 11
    • Ameyc2
    • Experience with Clear-Cell Carcinoma, E...
    almost 4 years ago
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    Psychosocial

    Other Care

    I was seeing a therapist for the time I was receiving and after. I felt it was very helpful to have the person to share you thoughts feelings and concerns. Most importanlty to help keep things in perspective,

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