Vulvar Cancer Support Group

Based on my experience of searching for cancer websites, there are very few information and support websites devoted to vulvar cancer. And I suppose it's not surprising that it's not a topic widely discussed in the community. It is I imagine a lot easier to talk about a skin cancer with a friend, rellie or neighbor or at your social club than to talk about a vulvar cancer. Being a man I can't speak for those with vulvar cancer but if I had penis cancer I would not be inclined to flash it around so to speak. Internet support groups such as this one should make the sharing of info and support a lot easier. The biggest difficulty I think is going to be to get the message out to the large numbers of people with vulvar cancer in the world that there are support groups on the internet. Doctors could play a vital role in giving their patients with vulvar cancer the addresses of suitable support groups on the internet. And it is so important that the internet support groups themselves be well organised, independent of entities with financial involvement in cancer such as drug companies, and with well-moderated forums so that they are considered reliable enough by doctors to recommend them to patients.

I don't know what the figures are for 2008 but for 2007 the American Cancer Society said "In the United States, vulvar cancer accounts for about 4% of cancers in the female reproductive organs and 0.6% of all cancers in women. The American Cancer Society estimates that in the year 2007, about 3,490 cancers of the vulva will be diagnosed in the United States". The population of the U.S. is about three hundred million and the population of the world is about six and a half thousand million so a simple extrapolation suggests about 75,000 people would be diagnosed with vulvar cancer worldwide in 2007 (all other things being equal eg if everyone were to have the same access to medical resources in 2007 as those in the U.S.).

I had at least 3 gynocologists tell me that all I had was a mole and nothing to worry about. One thought it looked like a genital wart and did some test where he put a drop of some liquid on it and then he told me that it wasn't a wart and not to worry about it. I had this "mole" for several years and finally told my current doctor that I wanted it removed, even if it was nothing, because it was in a sensitive spot and would rub thongs, get in the way when shaving, etc. Just to please me he removed it in the office using a local anethesia. It bled alot and I had to drive myself home. They biopsied the "mole" and diagnosed me with VIN 3. Since he now knew it was something he referred me to an oncologist so more tissue could be removed. I had that surgery about 3 weeks ago. At my follow up visit last week she told me that the tissue she removed had clean marigans (good) but that the center was cancerous (bad). I can't help but think that if the first or even second doctor I had asked about this had done a biopsy It might not have developed into cancer. I'm only 35 and I just got married April 30th. Talk about bad timing for this kind of surgery.

Over the past 3+ years I've seen my GP, two OB/GYNs and a dermo. I just had a sore spot in the fold of the labia uncomfortable during sex only.
Two scrapings were done -- showed nothing
One OB/GYN thought it was just think skin due to memopause -- gave me hormone supositories. After 6 months of that, I had fibroids with Atypical cells and had a hysterecromy.
Now the issue between the labia is much worse, the dermo did a punch biopsy and gave me many steroid creams that aggrivated the skin. The biopsy came back very vague, superficial perivascular dermatitits
Went back to OB, had another punch biopsy. This one came back very differently: Islands of hyperchromatic non-cornifying squamous epithelial cells - very suspicious for non-cornifying squamous cell carcinoma
I'm really hoping they are wrong but can't seem to find out what else could show this type of results

Neidarat

I had the same diagnosis as you have had. My cancer was squamous cell carcinoma 3 mm but the margins were clear. I then had to have a lympedectomy - done on 7/16. Those results came back negative. This gave my cancer stage 1b. I had my 4th radiation treatment today. I have 21 to go. I already have two children. I am so sorry to hear of your diagnosis. If you want to have children, you can harvest your eggs before you go into treatment. My other option was a radical vulvectomy, but I believe that my doing a skin graft, how would I know if the cancer comes back since the cancer grows deep into the layers. I wouldn't know.

Sanyo
Thank you for the info. I hope your treatments are going well. Hang in there. I had about a quarter sized portion of my inner labia/vulva excised. That was bad enough, I don't think a radical vulvectomy is something I would want to deal with. Your reasoning against it and a skin graft seem sound to me. Other than telling me that the margins were clean and scheduling a follow up visit in December no further treatment has been ordered. I haven't had a lympectomy. Is this something I should ask about? I figured I was good at this point and just have to watch for recurrence. Does anyone know what recurrence rates are? It seems high to me especially when HPV is involved.

NeidaRat
Do you have any idea how far the cancer invaded? 1 mm is Stage 1a. Anything more is Stage 1b. Mine was 3 mm and I was immediately told that I would have to have a CT scan, a lymph node dissection, and radiation. Depending on the lymph results, I might need chemo I was told. So if they did not do a node biopsy at the time of your excision, then you need a second opinion. Because it invaded, you need treatment. The radiation will kill whatever cancer is present and all of the VIN III that will turn into cancer eventually. Ask for a copy of your pathology report from the lab. Waiting 6 months without knowing lymph node results is not the way to go. If you live in KS or MO, I can give you the name of a good oncologist.