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Old 02-05-2009, 06:26 AM   #1
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Squamous Cell Carcinoma Bowen's disease non-HPV vulvar/labia skin cancer

I am going to post on this board so if anyone does a search here they will find this.

I have non HPV gential skin cancer. It is in the inside of my labia. I am hoping to find others that have had this. It was a small flat lavender spot. Did not itch or hurt. No other symptoms. Had to insist to have it off. The margins were not clear of cancer so I am waiting my second slide reading and have an appt with a Onc Gyne now. My slides are being sent off for a 2nd opinion.
I have had 2 minor excisions done so far and am expecting to have a wider excision done.

It is hard to find information on this cancer when in the genital region and non HPV related. Bowen's that is non HPV is related to Arsenic exposure. Not sure where I would have gotten that. Doing some research on the water table where I grew up. My father had positive Bowen's also.

I am hoping to find others with this or any skin cancer of the genitals..I am so fortunate to be HPV negative and have a normal Pap. I have had 3 children and do not plan on anymore. So that is not a concern.

I am on the skin cancer posting board and thyroid posting board. I appreciate all of you.

Oleander

 
Old 02-05-2009, 07:22 AM   #2
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Re: Squamous Cell Carcinoma Bowen's disease non-HPV vulvar/labia skin cancer

Thanks for posting your story here!. Hopefully the biopsy is positive news (well you know as positive as this cancer stuff can be ). Thanks for telling your store because something that rare is hard to do research on. When we share our knowledge with one another we gain power over something that causes fear. When we do this we lessen the power of it over us and gain strength in one another.

Good health to you ~

Jessii ****Hugs****

 
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Old 02-05-2009, 07:17 PM   #3
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Re: Squamous Cell Carcinoma Bowen's disease non-HPV vulvar/labia skin cancer

Oleander, I've never heard of Bowen's disease. I hope you find out some information from your research (on the water tables and finding other people to discuss this cancer).

I wish I had some information to help you, but I don't. Jessi put everything so beautifully (about knowledge gaining power over fear, etc).

Let us know how your pathology report goes, ok?

 
Old 02-06-2009, 06:17 AM   #4
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Re: Squamous Cell Carcinoma Bowen's disease non-HPV vulvar/labia skin cancer

Thank you Jesse and Pickle eyes. I have read many of your posts.....
I appreciate your support.

I am searching and reading. I have found an online support group for vulvar type cancers.

If you look up non HPV Bowen's there is some connection to Pesticides and Arsenic exposure along with other Factors. It is almost always Squamous Cell Carcinoma. I am no expert (yet) but learning much.

Gential skin cancer moves a little differently that outer skin skin cancer. I can see educating the public will be part of my life in the future.

Thank you for just being here. Oleander

 
Old 02-06-2009, 11:45 AM   #5
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Re: Squamous Cell Carcinoma Bowen's disease non-HPV vulvar/labia skin cancer

Oleander. I'm not convinced you have Bowen's disease. I say this because unless you had this lesion test ISH (in situ hybridization for HPV) then I wouldn't take anybodies word for it. Everyone thinks that if they have a neg PAP and neg HPV which is done related to the PAP they're fine. Not so. HPV can affect ANY area of the genital tract. While I was receiving radiation therapy for my invasive squamous cell of the anus, I developed a HUGE HPV lesion on my left labia probably 3 inches long half an inch wide and half inch high. I also do not understand why this is not being treated with LEEP as opposed to these biopsies you are having. What kind of doc is treating you for this a dermatologist or gyno? What exactly does your biopsy say and has the specimen been tested and shown to be negative for HPV? Is this why you say it is non-HPV?

 
Old 02-07-2009, 10:24 AM   #6
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Re: Squamous Cell Carcinoma Bowen's disease non-HPV vulvar/labia skin cancer

Dragonfly, I am sure in time eveything will show itself....I hope so.

Sorry this is so long.

When I went to my GP with this tiny flat lavender spot....he referred me to a gyne surgeon who did not think it was anything. Because I insisted they remove it due to my family history of skin cancer she complied. They both tested and retested me for HPV virus high and low risk..... I am negative. So I was told? At least so far. My Path says Bowen's disease, Squamous Cell carcinoma insitu....margins positive. It has been sent out for a 2nd opinion per my request. I am only 17 days into knowing my Path report.

The Gyne Surgeon was a real jerk !!! ....rough too. She supposedly removed the lesion on 1/22 and has yet to call me to tell me what the biopsy has showned. I will not step foot back in her office. My lymphnodes in my groin and armpit swelled 5 days after my biopsy and she would not even come to the phone to speak with me. Blew me off to my GP......So my GP and I called for my Path and he put me on antibiotics for my lymphnodes. My path showed Bowen's and Squamous Cell Carcinoma in situ but the margins were not clear.

Now the day I got my Path report we got a huge ice storm and had no power, water or internet for over a week.....could not go anywhere and had plenty of time to think and worry.

Never heard from the Gyne Surgeon so no way would I go back to her for anything. My GP was really disapointed in her and he was very supportive of me until I could get seen by someone else.

I went to a Highly recommended Derm 7 days later when the roads were passable who is very good. He could SEE the cancer she missed. She did a crappy job. He removed it and cleaned up the margins and sent his biopsy and my 1st one out for a 2nd opinion. He told me not to expect to have clear margins. I have an appt with a Gyne Onc set up. He discussed the Arsenic exposure connection with me especially due to my Dad's history.

My Father had Bowen's, squamous cell cancers and several melanomas. When you have non HPV Bowen's it is likely you have had arsenic exposure back in your younger years. Brother has melanoma. Turns out the water table where I grew up had a very high level of Arsenic. It takes decades for the effects of that to surface and at 55 I am the right age. I have talked with the CDC this week about it. You can have Bowen's without having HPV. Bowen's can be enviormentally caused also.

If this is what has caused it then I have to be checked for Bladder cancer also.......my dad had this and an elevated arsenic level. He remained living in our childhood home. It is all making sense now. I am waiting on my dad's records from the VA. I keep seeing myself gulping water from our garden hose as a child unknowingly.

So you see I am only 17 days into this. When I say non HPV it is because the 3 tests and the Pathology. I will check into the test you speak of and make sure they did this.

At this point I am not convinced of anything......I am in the wait and research period. The reason I say non HPV at this time is because so far I am showing negative and Bowen's can be caused by other things. I am being told I am HPV negative.

I will let you know the 10th next Tuesday when I go to get my stitches out and get to hear the news of my Pathology re reads. I will also talk to them about this test. I will ask that this test be done. I appreciate you bringing it to my attention. My appt with the Gyne Once is the 16th.

I have read many of your posts and you have been through so much. I appreciate your knowlege and you taking the time to respond to me.

Oleander

Last edited by Mod-S4; 04-19-2009 at 10:21 AM.

 
Old 02-07-2009, 11:34 AM   #7
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Re: Squamous Cell Carcinoma Bowen's disease non-HPV vulvar/labia skin cancer

Well given the extended history you presented in this last email regarding the arsenic exposure and family history (apparently your whole family was exposed) this would make sense and likely rule out HPV induced carcinoma. My concern comes from so many docs really not knowing much about HPV. Heck one of my surgeons thought my genital anal warts were hemorrhoids. So I just advise people to be cautious and be your own advocate. I had to insist last year that my gyn surgeon do rectal biopsies because I found a lesion. During the first surgery for AIN3 with laser ablation he didn't do the biopsies as I requested because he said the rectal mucosa looked normal. Six weeks later after it healed, the rectal lesion was still there. I then went back to him and insisted he do these biopsies. When he did the second surgery (never should have had a second surgery should have been done the first time), 2 of the 4 biopsies came back squamous cell carcinoma. So had I not insisted this be done, it probably wouldn't have and also wouldn't have been diagnosed until it became invasive. Just out of curiostiy, has anyone done a colposcopy?

 
Old 02-07-2009, 12:08 PM   #8
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Re: Squamous Cell Carcinoma Bowen's disease non-HPV vulvar/labia skin cancer

I appreciate your ideas....We have to be our own advocates. And who knows I could have arsenic exposure and HPV.....I will make sure to double check it all out. I do not want to overlook anything.

I am sure the Gyne Onc should do a colp. At least I will know to ask. Like I said this first Gyne Surgeon....she was not thorough and I was not impressed. I could tell the Derm was alarmed that she left so much of the obvious visable to the naked eye cancer.

Yes HPV education and all genital cancers are not talked about enough. Thanks so much for caring. I will let you know what I find out.

Oleander

 
Old 02-07-2009, 08:02 PM   #9
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Re: Squamous Cell Carcinoma Bowen's disease non-HPV vulvar/labia skin cancer

Oleander, you have been through a lot! I hope you are pleased with your current doctors. I hope they do all they can do to help you! (((hugs)))

 
Old 02-08-2009, 05:09 PM   #10
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Re: Squamous Cell Carcinoma Bowen's disease non-HPV vulvar/labia skin cancer

Quote:
Originally Posted by Oleander53 View Post
I am going to post on this board so if anyone does a search here they will find this.

I have non HPV gential skin cancer. It is in the inside of my labia. I am hoping to find others that have had this. It was a small flat lavender spot. Did not itch or hurt. No other symptoms. Had to insist to have it off. The margins were not clear of cancer so I am waiting my second slide reading and have an appt with a Onc Gyne now. My slides are being sent off for a 2nd opinion.
I have had 2 minor excisions done so far and am expecting to have a wider excision done.

It is hard to find information on this cancer when in the genital region and non HPV related. Bowen's that is non HPV is related to Arsenic exposure. Not sure where I would have gotten that. Doing some research on the water table where I grew up. My father had positive Bowen's also.

I am hoping to find others with this or any skin cancer of the genitals..I am so fortunate to be HPV negative and have a normal Pap. I have had 3 children and do not plan on anymore. So that is not a concern.

I am on the skin cancer posting board and thyroid posting board. I appreciate all of you.

Oleander
hi, Oleander - I had Vulvar carcinoma-in-situ 20 years ago, which, I think , is what you have. Before I tell my story, I want to tell you that everything turned out perfectly! Of course, I still worry that it or something else cancerous will turn up, but I try to forget all of it.
I don't know when my lesion appeared. I remember seeing that the semen after intercourse was 'pink', and I wondered why; but I still don't know whether it was the lesion causing it. Guess I have a tendency to erase things from my mind I think the lesion had been there a while before I learned about it. I was on a vacation with my daughter (without my husband, so no sexual relations) when I noticed a drop of blood on my panties. I then got a mirror and looked and saw a sore on my labia! I was concerned but didn't give a thought to it's being cancer!
When I returned home, I made an appointment with my gynocologist. As luck would have it, he had retired because he had prostate cancer!!! I hated having to see another gyn in that office but didn't know what else to do.
None of the doctors knew what it was, but they called in all the doctors and nurses to see it!!! Of course, I was very embarrassed and annoyed with all of them, so I left. They wanted me to have a biopsy, but I refused.
Fortunately, a friend of mine knew an excellent oncologist-gyn, who removed it. It turned out to be Squamous Cell carcinoma in situ, and the oncologist said that he believed that it was Bowen's Disease. It was 2 cm, and he said that no lymph nodes were involved. As I said earlier, this was over 20 years ago. So, I wish you good luck! My lesion itched and was rough and occasionally would bleed, but he still called it 'Bowens Disease'. I hope I've helped you. Mabent

 
Old 02-08-2009, 06:03 PM   #11
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Smile Re: Squamous Cell Carcinoma Bowen's disease non-HPV vulvar/labia skin cancer

Just when you think you are alone there's someone else who has shared the same experiance!. Thanks to both of you for sharing your stories That's what I love about this board!.

Hope everyone had a good weekend
Jess~

 
Old 02-11-2009, 11:31 AM   #12
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Re: Squamous Cell Carcinoma Bowen's disease non-HPV vulvar/labia skin cancer

Mabent,

I somehow missed your post.........thank you so much for sharing. I am happy to hear you did not have any recurrance. Do you have any other Health issues or other cancers? Just curious. What State did you grow up in? I am curious if anyone ever spoke of the arsenic connection?

Everyone was looking at mine too scratching their heads?. Lol !!!! Good thing I am not very modest.

It has been difficult to find anyone with Bowen's in this area of the body.

I have found a highly recommended Gyne Oncologist but he has to review your records and decide if he wants to take you....not sure if that is a good sign....But I would rather he take a look and see if he know anything about this first before we proceed. I have already sent him my records.

I learned from my past journey through Planet Thyroid that highly recommended does not necessarily mean much when it comes to Doctors. So I am hoping this guy is good. I just feel I need more follow up.

Again thank you so much. Oleander

 
Old 02-11-2009, 12:08 PM   #13
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Re: Squamous Cell Carcinoma Bowen's disease non-HPV vulvar/labia skin cancer

I just got good news........the Gyne Onc reviewed my records this morning and accepted me as a patient HURRAY FOR ME. I will see him on 3/4.

Thanks everyone........Oleander

 
Old 02-12-2009, 07:54 PM   #14
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Smile Re: Squamous Cell Carcinoma Bowen's disease non-HPV vulvar/labia skin cancer

Oleander, I'm also very glad that you have found a medical profesional that can help you. As for the modesty part I think we all left that @ the door when we heard the word cancer lol....Please keep us updated on what happens..

I hope this finds you all well and happy ...

Jess~

 
Old 02-13-2009, 02:41 PM   #15
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Re: Squamous Cell Carcinoma Bowen's disease non-HPV vulvar/labia skin cancer

Hi Oleander - I just saw this post. To answer your question: I have hypertension and diverticulosis ( have had 2 attacks of diverticulitis, which were cured with antibiotics).
I also have Osteoporosis (my mother and aunt both had it). I am so happy that you will be seeing that gyn-oncologist. You know that he is an excellent doctor, and that will give you so much relief! That's the way I felt about my gyn - the reason he retired was that he couldn't deal with the way his profession had changed...I think we all know that most of the new doctors do not take the interest in their patients which used to be taken for granted by us. How I miss that! Please keep posting! Mabent

 
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