NiftyNana's Journey with Vulvar Cancer

Patient: Vulvar Cancer

Patient Info: Currently in active treatment (initial surgery, receiving chemo rounds/radiation), Diagnosed: almost 6 years ago, Female, Age: 70

  1. 1
    over 4 years ago
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    Diagnosed

    Oh No

    It was definitely an "oh no" moment when a biopsy showed during a schedule pap smear that my "lichen sclerosis" condition had developed cancerous cells.

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  2. 2
    over 4 years ago
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    Surgery

    Procedure or Surgery

    The OHSU cancer doctors were specific, clear, and precise. They removed what cancerous tissue they could and then set me for radiation "just in case" there were any cells outside the perimeter of the surgery. As a Type II diabetic, the initial healing process was slow. The side effects during surgery and treatment were nil, but the following recovery was definitely an impact on my life. I was confined to a chair for many months. I had no medical coverage. I lived alone but independently, so I needed all the gadgets an older person can imagine just to get from my lift recliner to the bathroom and back. I did however have a wonderful support group in family and friends that provided all the items and made sure I ate well. But it was a lonely time.

    Went as Expected: Strongly Agree
    Minimal Recovery: Neutral/NA
    Minimal Side Effects: Neutral/NA
    Minimal Impact to Daily Life: Strongly Disagree
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  3. 3
    over 4 years ago
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    Bone strengthening drugs

    Drug or Chemo Therapy

    During this period, I was seeing a young doctor early in her career. She wanted me to go on an antacid to strengthen my bones, so I was taking them for awhile and then read the bottle to find they were full of sodium, which effects my kidney function, so I quit and did not go on another supplement.

    Easy to Do: Strongly Agree
    Minimal Side Effects: Neutral/NA
    Minimal Impact to Daily Life: Strongly Disagree
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  4. 4
    over 4 years ago
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    External radiation

    Radiation

    The radiation itself was not painful, but the skin in the vulvae area did peal like a sunburn and that made life especially uncomfortable for a loooooong time. Having to go 20 miles a day for radiation treatments with no medical insurance was sometimes a trick, too. I did find Ride Connection who gave me the most rides, but occasionally I had to beg rides off of very busy people to get there.

    Painless Experience: Agree
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Disagree
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  5. 5
    over 4 years ago
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    Clinical Trial

    All services at OHSU were covered 100% by them. I don't know if that is because I was a very willing patient or what. I submitted to every request they made: Can we take pictures and possibly use them as teaching guides? Will you take daily surveys that will help us monitor your care? And others along that line.

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  6. 6
    over 4 years ago
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    Side Effects

    It did take me a long time to recover. Tubes were sticking out of my sides and I was on a catheter for weeks, too. Eventually life went back to "normal" and I put it all behind me.

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  7. 7
    over 4 years ago
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    Other

    Celebration

    Because my 100% coverage ended before I could fulfill followup appointments, I did not speak to those doctors again. I still had no medical plan in place and could not afford the return visits.

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  8. 8
    over 4 years ago
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    Other

    Loss

    A part of the female anatomy that I didn't need anymore was surgically removed.

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  9. 9
    over 4 years ago
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    Decision Point

    Cancer was on hold for months.

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  10. 10
    over 4 years ago
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    Other

    Other Care

    After getting on Medicare in 2012, further diagnosis revealed that a few cancer cells had moved in and taken over the lymph node on my left side. Because it started as vulvar cancer, it was considered the same type, but it is very much like a lymphoma. It caused my left leg to swell to balloon tightness and later my right leg, too. I cannot walk on them, and the fear remains that I never will again. This time I am going to radiation and therapy at a wonderful clinic suggested by my new doctor. I am in the last stages of radiation and may be done with chemo (doctors need to confer). This time it is internal radiation, so very little discomfort at all. The chemo has been a blessing in disguise as it introduced me to massage therapy that has helped the circulation in my legs and gives me some hope that the swelling will one day go down, and I can wear shoes again and be the independent soul I have always been.

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