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Jackie’s Fight Like a Girl Story (Vulvar Cancer)

Jackie's Story (Vulvar Cancer)I was first diagnosed in 2009 with vulvar cancer and had a partial vulvectomy. I had six weeks of radiation and seemed to be on the road to recovery.

After a year my tissue started falling apart from radiation damage and I went through a couple years of treatment with really no success, just so much pain. The cancer came back in November of 2013 and I had a radical vulvectomy and spent a week at Moffitt Cancer Center.

I truly felt like this horrible ordeal was over with until I was re-diagnosed this month with the same cancer. I will win this battle no matter what! I will Fight Like A Girl and win! I have excellent doctors and I am very confident. Keep some humor during this and just remain focused on beating this terrible disease

Jackie
Florida
Submitted 05/31/2014

The informational content of this article is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.

This article is intended to convey general educational information and should not be relied upon as a substitute for professional healthcare advice.

2 comments

  1. Kimberly Rosenthal

    first of all let me start by telling you you’re very brave and courageous second of all I thought I was alone in this world and was embarrassed to say the words vulvar cancer when everyone ask me what type of cancer I’ve been fighting for the past 9 years I would just point down below and say it was quote unquote in the female area. I’ve had numerous surgeries at least 15 or more and surgeries to reconstruct. I would really like to speak to someone who has gone through this I feel so alone in the world if you could go to my facebook at kimmy rosenthal or if you can please feel free to call me at area code 951 490 9129
    teen prayers for you and your upcoming fights

  2. It was Spring of 2011. I told my husband on the 3 hour truck ride to the Tom Baker Cancer Center in Calgary, AB on that fateful day, that if I was diagnosed with cancer, that did not mean I was going to die. After receiving the diagnosis and getting back into the truck and headed for home, I reiterated what I had said earlier, “That doesn’t mean I’m going to die!”

    Earlier (2010)
    I noticed something small on my vulva one day. Initially I thought I had wiped myself too roughly. Note to self…BE more gentle. After 2 days, I decided to grab a mirror and investigate and saw what looked like the tiny head of a pimple. That’s not friction burn! It quickly grew each day so I went to my doctor. He performed a pap test and took a culture. Two weeks later at the follow up the results were negative and now it was called a lesion because of its size and I was referred to a gynecologist.
    Nearly a month goes by and the gynecologist performed the exact same tests as my regular doctor and we waited. Two weeks later at the follow up appointment, the results were also negative. He informed me that he had never seen this before or knew what it could be so he took a stab in the dark and decided to treat it as a genital wart.
    One of the most painful things I’d yet experienced down there then ensued. He had the nurse assist him while he used a cotton swab dipped in liquid nitrogen and rubbed it vigorously in the lesion for about 10 seconds 3 times. I know for a fact, try as I did, the people in the waiting room heard me cry out in pain. I hung my head low when I walked by to leave later. I was very embarrassed on so many levels.
    My husband was waiting in the truck, it was difficult to get in and sit down. I was in pain and unprepared for the bleeding. The hour long ride home was awful. I told my hubby how the doctor wanted to do that 6 times in total one week at a time even though he didn’t know what it was. What if it doesn’t end up helping. Sounds cruel and unusual to me.
    At this time my husband happened to be unable to work due to illness, his friend who was high maintenance was visiting long term and my mother was in the hospital dying of cancer that metatist from repeated misdiagnosis. There was no way I could fit in this doctors’ whim. Other things would have to come first. I kept my eye on it and it grew until I finally went back to the same gynehologist for follow up. He examined me in his office, set an appointment to take a biopsy in a month thru outpatient and when I woke the nurse informed me he changed his mind and decided not to touch it after all and that he’s refer me to someone else. He retired shortly after.
    I met and was examined by a female oncologist in Calgary and she sent me for a Cat scan to see the depth of the lesion. That took a month before it happened and then 2 weeks for the follow up…the diagnosis, whatever that may be. Type 1A Squamous Cell Carcinoma was the results. Surgery and radiation was on the agenda. Sign here…
    She never gave me a death sentence, she never gave me percentages, odds, or survival rate ratios. She was honest, compassionate, frank and neutral. She explained every single thing that would happen with the radical surgery needed (removal of nearly half of the left side of vulva, excision and biopsy of lymph nodes on both sides of groin, redirect a small portion of anus to avoid need for a colostomy bag) the after effects (may pee crooked for just a while or forever), total paralysis from the waist down for the first 4-5 days then slowly begin walking, will have nerve damage in groin and legs (especially left side) forever.
    The oncologist drew diagrams giving me a visual aid (it helps) and pretty much said, “OK, lets get this done and over with so we can all get back to life, shall we?” Don’t get me wrong she was wonderful but after the follow up 2 days after the surgery, I never saw her again. She had a huge team of professionals working with and for her. I was out of the hospital in 9 days and only one month or so to recover and be back in Calgary for 5 ½ weeks of radiation treatments where I stayed at a hostel on my own. They nearly had to stop the treatments because of the burning and swelling to the skin but I insisted that would screw up my subsidy and one bedroom place I was staying at. Keep going, please.
    Because I knew I would be bed ridden for days after the surgery, I recorded my own meditations and created a book full of self help tools I could use from my bed. Mental, cognitive, etc. The cabin fever takes over sooner or later but I’m sure the nurses have seen much worse. You can only be left on a liquid diet for so many days before one gets cranky. My diet was changed but the kitchen kept getting it wrong.
    I was never told that after a year if the pubic hair hasn’t grown back by now it never will…damn radiation…this possess a problem. I was never told that the scarring to the nerves in the area would take years to develop, so I woke one day 2 years later, partially paralysed. Where did I put that stupid cane? When others comment on the cane I tell them; I don’t walk with a cane…the cane walks with me!
    After my cancer I found it difficult to integrate back into the world again. I had felt for long before the diagnosis that I was already having problems pretending I was integrated at all.
    Many women don’t even know what a vulva is. It’s sad really because just about anyone reading this knows what a scrotum is. Why are women so ashamed to talk about our bodies that we needed to come up with pet names instead of just saying vagina? A vulva is comprised of all the external parts that people would just call the vagina. Any part you can see with a mirror (which I highly suggest doing at least once a month because you should know your body well enough to notice changes. Regrettably, it’s not a part of the yearly pap exams in most places.
    I’m going to call you Kimberly Rosenthal.
    I’m publishing a self help book for women next week and have dedicated an entire chapter to vulvar cancer awareness. It will be available in print in 2 months (that’s how long it takes once it’s actually published) and available for the public then.

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