RE: Daughter (29) c Vulvular CA...

  1. Sorry...don't know how to do the reply, but wanted to thank those for your replys,links. support & prayers. I went with my daughter to the doc pre-op, & found out she has Stage 0 cancer...or in 4 areas of the perineum. BC the biopsies showed it was in situ, he said it is not necessary for lymph node biopsies. She had a partial vulvectomy this wk, & is recovering in a lot of pain, but the doc is optomistic that there will be an 80 % recovery. The 20 % re-occurence usually occurs in the 1-2 yrs after she will be f/u q 3 mos. There is also some new med that is suppose to help improve people's immune system against this HPV virus..& he will discuss that with her on her post op visit.

    I am thankful for the support, & the link that was given, is one the doc had provided to me as well. It is a shock to know that in 1997, they have found that 3 out of 4 of EVERY woman from age 17-60 has this HPV virus! Only 1 out of this 3, go on to symptoms or cancer. Symptomology & progression to CA, is linked to meds, HIV, stress, & a compromised immune system. There are a lot of myths out there that I never even considered, & man, if they want to teach abstinence, that website would be an well as a wealth of info.

    For recovery, the doc recommended sitz baths, using a blow dryer to keep the area dry & open to the air, & pain meds. He feels that she will be able to live a normal life, & that he was able to do his work without impairing the areas of sensation. It was refreshing to see a doc who was so kind. He told her right before surgery that, this was probably, up until now, to her thinking, the worst day of her life, but that he was confident, that after the surgery & recovery, that she would have a full & normal life, & that in the long run, this awful day will become a distant bad memory. I found it a rare thing for a doc to have the compassion that he well as sensitivity etc. We are blessed that in this town, she has this doc who learned his skills at Sloan Kettering, & has been doing this for 20 yrs.

    If my daughter hadn't been misdiagnosed, this could have been simply treated & pretty much done with. Now, she will have to live with this every 3 months for the rest of her life...but thank God, she will be a cancer survivor. It is truly frightening to read how prevalent this is, ..esp without symptomology..& even neg pap smears (hers was). I had also thot this would most likely involve cervical CA, & mostly elderly women. The doc said that he has pts from age 17 to 80...and it is NOT uncommon to have vulvular cancer as a result of the HPV.

    If any of you have any further info on Vulvular Cancer, I am still interested in learning all that I can. Just knowing that other nurses could understand what we were,& are facing, was so very helpful..& I am most grateful....I once went to this seminar, & the speaker, kept repeating, from her own experience of being a patient, that "it takes a nurse to save your life".

    Well, the doc's can do their miraculous things, but I think there is nothing like the inate goodness of a nurse & besides the skilss that we use in our profession, I truly appreciate knowing that this bb is available, there has been info & support & it is something even better bc you are fellow nurses.
    ...Will post if I learn more down the road, as this has been a real eye-opener...& with 3 out of 4 of us carrying this virus, what an impact it can have.


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    Joined: Apr '01; Posts: 3