Latest Vulvar Cancer discussions http://www.cancercompass.com/message-board/cancers/gynecological-cancers/vulvar-cancer/1,0,119,38,74.htm Sat, 19 Jul 2008 00:00:00 GMT Sat, 19 Jul 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ Hi all. I've read some posts on here but thought i'd leave it until we knew more about what the situation is about my wife who is 28. Recently she had been diagnosed with Cancer 1 of the Vulva and the 1st operation was more of a dignostic operation (not radical as they call it) as the biopsy performed in another hospital wasn't that great. We got the results back recently and they are 100% confident that the cancer has gone but a further op is needed in July to take her groin/pelvic lymph nodes and nearly all of the clitoris. This they say as precaution due to the depth of the cancer which was over 2mm in depth. Ok, there was a mild celebration because the cancer has gone but more worrying that we're only recently married and sex life good of course, but that isn't everything. Main worry is the potential swelling in her legs due to the lymph nodes being taken and the risk factors involved in that going forward in life.  They are 99.5% sure nothing is in them but its procedure. The worrying thing is this potential swelling and in many cases, severe swelling! We are concerned about the clitoris going but if that means the cancer is gone then so be it, her health is much more important, but its this swelling that she is most worried about because as she says, nobody can see the scars from the operation but will be able to see her legs swell up and this really is concerning her.Has anyone else had a similar operation?Also has anyone had the lymph nodes taken out (around my wife's age of 28?) and been ok?What do you recommend for her once they are taken out? Exercise, if so, what? Can you go on holiday? Anything you can do to prevent swelling? What is life like without them? Is it uncomfortable? And on another matter, our sex life, will sex ever the same or at least close with the clitoris gone? The doctors are telling us that there are many ways to have an orgasm and not just from the clitoris....?Thanks in advance and all the best,Matt.   http://www.cancercompass.com/message-board/message/all,24867,0.htm rizzla Tue, 10 Jun 2008 00:00:00 GMT Hi, 1 1/2 years ago I went to the Dr for what I thought was symptoms of the change of life, dryness, redness etc well after a biopsy I have vulvar cancer, first laser surgery, then excision surgery, now after the 2nd operation 6 months later it is back in 4 spots, but they say it is precancerous right now, now I am trying Aldara, just one treatment and I am a wreck, I know I have the best Dr in Boston for Vulvar Cancer, but won't I get more problems with sores, redness etc to get rid of the cells. If anybody has this also, will it keep coming back for the rest of my life. My Dr is a little puzzled why it keeps coming back as I haven't smoked in years, he said it usually comes back from women who do not quit. Are  all of the women with Vulvar Cancer previous smokers. I know I am talking in circles, but I am going to work, I am also nervous as I am a fair, redhead that has skin issues down there anyway. Anybody that tried Aldara, please write.Thank you, Karen    http://www.cancercompass.com/message-board/message/all,23812,0.htm karenthekat Wed, 07 May 2008 00:00:00 GMT I first noticed a small growth on the right side vaginial area.  It feels like a small - smaller then a pinkie finger nail solid flat disk underneath skin that resembles a skin tag.  I also have noticed the skin behind it and across is thick ands bumpy but not discolored. I went to my doc who refered me to a Gynogologist but I cant get in until May 8th.  I went on line and have now managed to freak myself out.  Anyone else have symptoms like this? http://www.cancercompass.com/message-board/message/all,23438,0.htm Nikkik Fri, 25 Apr 2008 00:00:00 GMT I've just had a wide local excision and a couple more biopsies. I'm struggling with the burning/stinging pain. The surgery was done last monday, now being Saturday morning. I've been up since 4am. I was told no aftercare information. My surgeon asked me before I went into theatre if i had any questions. At the time, I didn't know of any. It was a public holiday here yesterday, and now being the weekend I'm not sure what to do. Is what I'm feeling normal at this stage, or might it be infection settling in. I can not bare to touch the area at all. I had CIN3 in 2004 and had a LLETZ procedure, with regular followups, being all clear. I had a baby in Sept 2006, and noticed after giving birth i felt bruised when i urinated. The nurse said it was probably from the birth. This pain has come and gone since. After seeking advice from my doctor, she has referred me to a skin and cancer specialist who performed a biopsy of the area. She was very suprised when it came back as VIN as it did not look like it at all. I was then referred to an Gynae Oncologist. Which has brought to where I am with treatment. I would really appreciate any advice, I feel really scared.Mandy (Australia) http://www.cancercompass.com/message-board/message/all,23423,0.htm tuscan Fri, 25 Apr 2008 00:00:00 GMT Just a note to let everyone know that as of last month, after being treated for Stage IV,  I have outlived my prognosis by one year.   Just goes to prove that no matter what your prognosis is, keep on living life to the fullest that you can.  Regards.  Jacqueline Partridge http://www.cancercompass.com/message-board/message/all,23166,0.htm Jaxback Thu, 17 Apr 2008 00:00:00 GMT I have been diagnosed with mild vaginal and vulvar dysplasia which is multifocal.  I also have lichen sclerosis.  Even though my dysplasia is mild, because of the multiple locations, the gyn/onc is treating me with Effudex.  OMG!!!  Talk about painful!  I only did 3 treatments, and the pain was almost unbearable.  I returned to the gyn/onc for a checkup and I explained that I had not done a treatment in 10 days.  I apparently had a lot of escoriation and ulcers both vaginally and vulvar.  I am not to begin treatments again for other 2 weeks.  The doctor prescribed lidocaine for the pain/itching, as well as suggested I use Desitine for protection.  My question is:  Is this much pain common?  Will it get better with continued treatments, or is this pain I will have to live with until my 12th treatment in early June?  I appreciate your input. http://www.cancercompass.com/message-board/message/all,22995,0.htm trulyblue Sat, 12 Apr 2008 00:00:00 GMT Hi. My oncologist gynecologist said that I will be needing laser surgery for my vin 3. He's going to laser out the dysplasia and then sitch the other parts back together. I've never had this kind of sugery before and am a bit scared. I was wondering if anyone has gone through it and what kind of pain and or how much recovery time I will need. My immune system is low due to an organ transplant and so I'm guessing that even with this treatment, the dysplasia will end up coming back again. Thank you.  http://www.cancercompass.com/message-board/message/all,22598,0.htm Kalia13 Tue, 01 Apr 2008 00:00:00 GMT Hi there, I'm just wondering if there is anybody out there who has had a radical vulvectomy and lymph nodes removed, who can give myself and my family some comfort.  My mum who is 66 was diagnosed with vulval cancer only a few weeks ago and is having surgery next week. We are all really frightened and i thought it might help to speak with somebody who has been through it. http://www.cancercompass.com/message-board/message/all,22442,0.htm Elliebear Fri, 28 Mar 2008 00:00:00 GMT Can anybody please help me out.  My mum will shortly be having a radical vulvectomy along with lymph nodes removed.  She has been told that she will be in pain for a while after the op and that it will be sore when she goes to the toilet. Is there anything that she can use in that area to help promote healing or at least lessen to pain on unrinating.  Has anybody used any kind of herbal remedy? or do you have any suggestions that might help her. Thanks you http://www.cancercompass.com/message-board/message/all,22151,0.htm Elliebear Wed, 19 Mar 2008 00:00:00 GMT I am 9 weeks into aldara cream for vin 111 and am going to have x2 photo dynamic therapy has anyone had pdt for this. My treatment is combined and new so fingers crossed it works hoping to avoid surgery. I would be grateful for any info or experiences re pdt on vulva am getting worried about it now as after this week i have a 2 week break before pdt.  http://www.cancercompass.com/message-board/message/all,21835,0.htm amawill77 Mon, 10 Mar 2008 00:00:00 GMT Hi, i was just wondering if there is anybody out there who can give me some more information about vulval cancer.  My mum has just being diagnosed and has to have a radical vulvectomy.  At this moment in time we do not know what stage the disease is at, as she is waiting to have an MRI scan.  She is really frightened as is the whole family and she is extremely distressed about the amount of pain she'll be in. Is there anybody that can commnt as we are really scared!! http://www.cancercompass.com/message-board/message/all,21571,0.htm Elliebear Mon, 03 Mar 2008 00:00:00 GMT three months ago I felt discomfort around my clitoris (on the right side, kind of like in the crevass area, it kind of felt a little raw), vaginal entrance and around the anal area - went to obgyn who said yeast infection.  swabbed me for it and told me she would test for it.  although I was doubtful, she seemed sure it was yeast, and prescribed cream.  First cream didn't work - and she called me to say my yeast test was negative, but that was common - a false negative, but she was 100% sure I had a yeast infection.  The cream didn't work so two weeks later she prescribed me another - that burned me like mad and I discontinued immediately - she gave me another - that didn't work.  so she told me to go in for biopsy.  She biopsied me in three areas, one just inside the vagina and two on the outside, and ignored the area beside the clitoris and the anal areas, saying they looked fine.  I told her they were painful and had appeared enflamed at times - but she ignored me.  Anyway, I found out later she had NOT tested for yeast, so I made her do a complete panel (all came back negative) - a week after my biopsies, she told me to come in and see her and the specialist (who used to do gyn/oncology) as he would examine me too. I  went in a week later and was sitting on the exam table waiting for her to get the specialist - she came back in and said oh, he won't see you because you have to wait 3 weeks after a biopsy before he'll see you.  I was really annoyed - I'd wasted 3 hours of mine and my husband's time and as they work in the same office, wouldn't you think she would KNOW that I had to wait three weeks before coming back to see him?  SHE was the one who had told me to come in, one week later.   Anyway, the treatment in general at this office was appalling - during the biopsies the doctor kept dropping the equipment on the floor and couldn't find the tools she needed and was going in and out to find stuff - totally disorganized.  Anyway, I thought, time to get a second opinion - so I got a copy of her notes, which were like chicken scratching and impossible to read, and went to another obgyn who referred me to an obgyn/oncologist.  I went to see him, telling him all my symptoms - the pain/puffiness around my clitoris/labia majora, and around the anal area... and told him the story so far.  He examined me and said that yes it's Vin ii (although he just saw the biopsy results for that) and said I need a partial vulvectomy - that he'd remove the area about the size of half a dime, and it was really minimal.  I said, what about the other painful areas and he said no, nothing to do with him, i must go and see my regular obgyn for that - and I said, but how do you know it's not all connected?  I could have Vin II in other areas - and he said no, the only area with Vin II was a tiny area around my vaginal entrance, which is what he would remove. He said he could easily tell Vin 2 areas, the skin was firmer and looked different.  I didn't think of it at the time but half the size of a dime is TINY - the area biopsied was much bigger than that - so how can he think that removing an area that small will remove all infected cells?  I feel like he's being way too conservative, although obviously I don't want him to take out a big area - but if he has to, he has to.He did a biopsy of my cervix and said if there are problems there, he will take care of them d uring surgery - but I just don't feel right about this - my anal area (not right around the anus, but further out towards the buttock) is constantly burning - feels like it's chafed - and I feel like it all HAS to be connected.  It's been like this for over three months - i've tried hydrocortizone cream, yeast infection creams, savlon, bacetrin, moisturizer - nothing makes a difference, it just feels constantly chafed.This "second opinion" person, the obgyn/oncologist, was referred to me via a friend.   I don't know if my health insurance will pay for me to have a third opinion... I don't know what to do.  I'm waiting for the gyn/onc to let me know the results of the cervical biopsy and then I'm going in for a partial vulvectomy - not laser as he wants to send it to the pathology lab.  Anyone got any ideas?  Or does anyone know a really good obgyn/oncologist in Fort Lauderdale they can refer me to???? Is it possible that the enflamed area with VIN can be irritating the skin around it and making my other areas sore?  any ideas?T hank you everyone for your help.  http://www.cancercompass.com/message-board/message/all,21028,0.htm tennisgem Sat, 16 Feb 2008 00:00:00 GMT My daughter is only 19 and has been diagnosed with VIN III which is the precursor of cancer. This is a nightmare for us,I have spent almost three weeks glued to the computer,searching for all possible treatments, reading on how the surgery is done, reading medical papers on studies done in the USA and overseas and finally researching all of the Pharmaceutical companies in the world working on a vaccine that could cure the cause of many vulvar cancers, that is the Hateful ugly HPV virus. There is also a  percentage of vulvar cancers that effects older women and it are not caused by HPV but the treatment approach used is about the same.   I work in the medical field and I am a nut when it comes to research. I am the kind of girl who will always get a second opinion even if I liked the first doctor.  Up until now this is what I have found. I do not want to sound too technical  when I explain all that I have learned but I know how difficult it is to find information on this condition. I know how it feels to be alone with the fear of the unknown and no resources available. in a nutshell here is what I have learned.Here clarified are some terms that can be confusing. VIN stands for  Vulvar intraepithelial neoplasia (same as dysplasia)There are different classifications of VIN VIN I         is mild dysplasia (neoplasia)   doc will keep an eye on it VIN II        is moderate                          watch it/or laser (preferred)VIN III       is severe               or high grade               surgery What causes VIN ? The majority of VIN in younger women from sexually active adolescents to older women is caused by the HPV virus.There is also a similar type of cancer that is not of viral origin and effects older .women  First of all, the good news. There are pharmaceutical companies scattered all over the world working on a Therapeutical vaccine that could eliminate the virus in people already infected with highly dangerous strains of HPV (16/18),this vaccines are being formulated to also protect and treat infections caused by other dangerous subgroups. The vaccines now available on the market are not to treat existent infections or cancer lesions caused by the virus. they are only for prophylactic use, which in simple terms means just for preventive use. they are  Gardasil in the USA and Gardasil and Cervarix in Europe. I have read the results of the clinical studies and is believed  that there should be a vaccine out in no longer then three years maybe sooner. I think we are blessed to be so close to it. In the mean time if you have high grade vulvar dysplasia you need to take care of it with surgery. Do not take chances, high grade VIN is not a pathology treatable with laser,the oncologist needs to have tissue for pathology examination in order to see how deep in the skin and sub tissues the changes go. This is impossible to do if the tissues are destroyed by the laser. Any oncologist will tell you this. If you have high grade dysplasia (VIN III) do not let your gynecologist treat it,at this point you need  an oncologist who specializes in gynecology.   If you have VIN I or VIN II, your doctor might use the laser. If he decides to wait for it to regress (not advisable especially in VIN II) please be  be watchful for worsening symptoms like persistent itching and spots or warts on your vulva.The mirror should become your best friend and not only for the reflection of your face. Run back to the Doc if you note something new and make SURE he repeats a  biopsy. If your dysplasia is caused by the HPV virus and you smoke my advise is  STOP SMOKING! I have been telling my daughter this for the past three years but she did not stop until 3 weeks ago when her doctor called her with the news. He said that smoking is strictly correlated with the fast fast advancement of the dysplasia,the oncologist told us the same thing. If you have VIN III like my daughter, opt for surgery which is the safest approach to eradicate the precancerous cells. Your dysplasia also called carcinoma in situ which is Latin for cancer within site, is not yet deep enough to require a radical vulvectomy.  With a deskinning (I hate this word)  only the skin is taken off,as soon as this is done a pathologist which is on site not too far from the surgery room,analizes the removed skin to make sure the dysplasia is not deeper then one millimiter. If this is the case,the gynecology oncologist which is the one who performs the surgery will decide based on the pathology  findings if it is necessary to perform a sentinel node test in tandem with a schintography which will yield  more accurate results,in finding out if your lymphonodes are involved.If they are involved then removal of the nodes is performed.   If you are a young woman and your oncologyst is suggesting a partial skinning vulvectomy, she will probably suggest a graft which is usually taken from your thigh.To do this, a plastic surgeon will be in the surgical room with the gynecology oncologist.  If you are an older woman and do not care much of how it is going to look down there, then your doctor would probably do a simple closed surgery, after excision of the area the margins will be pulled together and stitched.  This is a lot easier and less painful,but my daughter want's to look as normal as possible given she is still so young so we have opted for the local excision,or also called partial deskinning of the vulva.  Very important is that you get a second opinion. The first gynecology oncologist we met with was just a year fresh out of school,we did not know until I looked him up on the hospital web site showing the year he had graduated. Very nice guy but not very many surgeries  under his belt. The plastic surgeon he referred us to was also fresh out of school,nice guy but not very experienced.     We have two appointments next week with a gynecology  oncologist also a woman with 26 years experience who will probably be able to do this with her eyes closed. The plastic surgeon also a woman,she has quiet a few years experience in reconstructive surgery.  We are praying that everything is going to go right way. On our part we are doing our home work on the questions to ask before each appointment. Do not be afraid to ask. I know it can be very scary to read and find out about all the different aspects of VIN ,how the condition evolves and how the surgery is done,and about the recurrence rate.But remember that the more you know the more you will expect from your doctor and this can only yield better outcome. I am trying to be strong for my sweet daughter who has a whole life to live. I cannot begin to tell you girls how hard it is for a mother to see her child having to go this type of ordeal. I wish this would have been my ordeal and not hers.Blessings to all of you Lina Giuliani    http://www.cancercompass.com/message-board/message/all,20531,0.htm sofiaroma Thu, 31 Jan 2008 00:00:00 GMT Hello              I was just wandering if any other woman, lady, girl, has been through the same as what is happening with me and if anyone had any advice for me. 3 years ago I noticed what seem to be a little white raw pacth at the opening of my vuva I went to the doctors quite a few times but none could tell me what was wrong instead just treated me for thrush. after about a year I was not happy as the icth got worse and the patch got bigger I went back to the doctors and she sent me to the Gyneo, he looked and couldnt belive they had left me so long has there was a few patches now he said he needed to do a biospy and bring me in and do wide local excisions to remove these I think he knew straight of just by looking. I went in and they removed the sores and the results were VIN III so they decided to see me every 3 months so went back 3 months later. I went back and it was back again so another wide local excision for me again all of it showed VIN III so again 3 months later I went back and again another wide local excision 3 months later I returned and there were only a few small patches He took a biospy there in the office and did a smear insde and 2 from the outside one from either side and they decided they don't want to keep cutting so decided they would leave me 6 months and then I went back yesterday and they have had a look and said that they do not want to keep cutting I'm only 28 and they don't want to leave me disfigured so it was a stand in docyor and she has discussed laser with me I know as we discussed that laser isnt as effecticve as the excision but there is only so much skin they can take I feel as if I'm going backwards and am  anxiuos about the laser to say the least who has had laser what is it like, yesterday they took 3 more smears and the gyneo who I'm under is going to phone me next week to arrange the next step, I hate this feel very scared http://www.cancercompass.com/message-board/message/all,18244,0.htm Paula1979 Thu, 22 Nov 2007 00:00:00 GMT I was diagnosed with Vulva Cancer 11/2006 and was treated with Chemo and Pelvic Radiation.  Because of this I was thrown into instant menopause.  During Treatment and for a few months after had not had sexual intercourse because of the obvious pain associated with your skin being burnt off.  Since June/July of 2007 my husband and I have been trying, I was told if I don't I;d have to be fitted with a dilator.  It is now 11/2007 and although we have intercourse 3 or 4 times a week, it is still a lot of discomfort for me. I have a very supportive and understanding husband, for which I thank God.  I can orgasm if stimulated by touch to my clitoris, but it's not the same as it was, actual intercourse does absolutely nothing for me and because it causes discomfort I can't do it for very long.  I keep trying in the hopes that some day it will get better. Anyone else feel the same way, or does it eventually get better? In the beginning It was extreme pain and my husband could not hardly enter me at all, I can now receive him all the way, but again, because of its discomfort its not something I get excited about anymore.  Any feedback would be great. http://www.cancercompass.com/message-board/message/all,17773,0.htm positive Thu, 08 Nov 2007 00:00:00 GMT I was wondering if anyone who has had a partial vulvectomy could help me out. My surgery was near the first of August 2007, and pretty extensive in that I had somewhere around 20 stitches that extended across the left, under the vagina and half way up the right. I lost one labia minora and half the other. My question for someone who has had the same surgery is when does intercourse stop hurting? and does surgery affect giving birth?? My fiance and I are getting married this May and I am looking forward to starting our family soon after. Right now I cannot imagine giving birth, when just intercourse causes me such discomfort. Any advise you may have to offer would be very much appreciated. http://www.cancercompass.com/message-board/message/all,17741,0.htm RNcVIN Wed, 07 Nov 2007 00:00:00 GMT Has anyone had any success with this type of cancer not coming back? Ive had surgery, lymph nodes removed, and now 1 1/2 yrs later I have "pre-cancer" cells in the general area and need to do for laser surgery. So, what do others think....is this just going to be an on going thing, or are there "happy endings" out there. Thank you. http://www.cancercompass.com/message-board/message/all,17144,0.htm cathy2 Tue, 16 Oct 2007 00:00:00 GMT I was wondering if anyone knows what I am in for.  My DR. recommends that I have Laser Vulvectomy for VIN.  I've had a biopsy in March of 2007.  Came back VIN II.  Then in July I had an excision because she did not get all with the biopsy.  I still had the condition in the surronding tissue and now it has gone from a VIN II to a VIN III.  She has scheduled Laser Vulvectomy.  I have also used the creme with no results.  It is still in the PRE-CANCER stage.  Am I doing the right thing?  She tells me I will be uncomfortable for awhile and needs sometime off of work, I sit a a desk all day.  She also tells me probably the reason I got this was my immune system was down since I have lost 70lbs.  I do feel good, but just scared. http://www.cancercompass.com/message-board/message/all,16541,0.htm guida Wed, 26 Sep 2007 00:00:00 GMT After reading alot of postings on this board, I realize alot of you are much more advanced than I am and my heart goes out to all of you.  I had just received results today from a biopsy of VIN 2 -3 and have to have a surgery in 3 weeks to have it removed.  I was told a local excision with a few stitches and hopefully they can remove it all in my vulvar area.  I am scared to death but was told the surgery was not a big deal but was being done at the hospital with anethesia.  I have already had a hysterectomy and partial vaginectomy over the past 2 years.  I was told I will only be out of work for 2 days and it was no big deal.  After all the pre-cancers I've had and carcinoma in situ's, I am very concerned and want to know if anyone has any advice, knows anything more about this surgery.  I've read a few on here that state 3 weeks out of work so I know mine must not be that bad but I still am very worried about the continually progressions over 4 years.  I would really appreciate any comments to the surgery itself, healing process?  painful?  etc etc.Thank you so much and my thoughts are with all of you.Donna http://www.cancercompass.com/message-board/message/all,16516,0.htm Donna317 Tue, 25 Sep 2007 00:00:00 GMT Hi, I was just diaognosed on Thursday after a biospy and got a call from my doctor that said I was in stage 111... This was by a fluke as I  haven't been to my gyno for years , as I didn't think I needed to having a complete hysterctomy. Boy, was I wrong. I had been having having alot of pain, bleeding, and burning when I urinated. My main doctor had said I had a bladder infection and started me on atibiotics...Everytime I got up, walked or layed, I had the urge to urinate, even a when it was only a small amount. I hurt everytime I felt the need to go to the bathroom...Well, I just figured I had a fallen bladder again, which I had surgery for almost 25 years ago. My primary physician referred me to the gyno. They immediately saw the lump lesion and said they were concerned and wanted to do a biposy right then. Two more doctors were called in and the procedure was done immediatley...The only pain I had with the prodecedure was when the needle to deaden the area was administered and it was excruciating, but went away soon...They also did a pap which came out normal...I bled, but it also soon went away... They said they would call me within the week if anything came up abnormal... Two days later I got that dreaded call...I go in Oct. 2, for another procedure to see if its spread to my bladder and lympnodes...Yes, I am scared. Especially after hearing it is in stage 111...I don't want to put my family through all the radiation and chemo and having to take care of me, although they would without any hesitation...The reason, I have taken care of my father-in-law when he was alive and had multimyloma cancer which he only lived 2 years after diaonosed... I don't want to have my family to go through what I did with him, although I would have done it again...My main question is: Is there really a cure for this rare cancer, or is it just prolonged with the treatments and your quality of like is not good and your family suffers longer too? Is there a reason to really go through all of this, or just take day by day as it comes? Is this a death sentence? I just don't want my family to have to do through a prolonged depressing life if there really isn't a light at the end of the tunnel? Any answers would be greatly appreciated...I Do Love Life As It Is Now, enjoying my family, grandchildren and children...I just don't want to prolong anyones misery and worry...Am I wrong? http://www.cancercompass.com/message-board/message/all,16406,0.htm Memmawof9 Sat, 22 Sep 2007 00:00:00 GMT  just went in for my yearly pap today and had my doctor look at a dark pigmented spot on my upper left side of my labia. This mark has been there for a couple of years and there are a few round frekled brown spots also. Not sure how long they have been there for though. It was only recently that I got paranoid because I would have this persistent itch that I started looking up these symptoms on the internet. I thought maybe the itch was a result of me shaving everyday. So, I decided to get a Brazilian Wax and now the itch is gone and I was able to closely examine my vulva area. My doctor said the dark pigmented area does not look like Vulva Melanoma. But he can do a biopsy so that I can feel better. So, I had the biopsy done and it was nearly painless except for the numbing part. I don't feel any pain right now. What is the recovery time for such a procedure?Any one else here had this procedure? And what was your experience like? Thanks in advacne for any advice. http://www.cancercompass.com/message-board/message/all,16077,0.htm WCD1000 Tue, 11 Sep 2007 00:00:00 GMT Hi there,I'm new to this site, but my Mom was treated for vulvar cancer 8 years ago, it first appeared as a sore on her vulva area about the size of a quarter.  They took her in for surgery and removed the cancer and her lymph nodes, she had problems afterwards walking around but soon had radiotherpy and healed.  She went back for check ups and was given the all clear and cancer free within 5 years. In the 6th year she found a small cyst and went to the doctors again, she was told that the Vulvar cancer had returned in a different form.  She was in a stage 3 type.  Again they did surgery and basically she has nothing down their anymore.  They did plastic surgery to her wounds as the previous surgery had left no room for skin graphs.  Her plastic surgery didn't take so she was left with open wounds.  This surgery was done in Feburary and she is still in her bed still has open wounds and within the last 6 months the cancer has returned.  They couldn't do Radiotherapy again because you can't do that twice in the same area.  She can't have chemo because she isn't healed.  Daily she has nurses coming to her house to pack the open wounds with gauze.   The tumor was 14cm in length and the shape of a sausage.  They removed it all in surgery, but were concerned that the tumor was attached to the pelvis bone, they took scrapings and these came back cancerous.We are now in September and she still hasn't had any further treatment because she isn't healed.  She now has to go into  hospital again for emergancy blood transfusions because she is too weak to walk.  We don't know how far the tumor has grown yet in these past 6 months.  I guess we are lucky as my Mom lives in England and they don't have to pay for surgery or medicine etc... i live in Canada and can't be with her as much as i would like.  I'm scared for her.. she is only 63 and has had to endure alot these last 8 months.  She tries to be up beat as to not worry me, but i'm very concerned.  I won't know how much the cancer has spread now until Thursday - so am in limbo right now.I wanted to come onto a site that details and discusses vulvar cancer as many cancer sites don't.  It's so rare but this is my Mom's 4th reoccurrance.So i guess my message to you all is:-  Please once you've been given the all clear, please take time to check yourself out, and make sure you go to the gyno every 3-4 months.  I'm already being checked by my Doctor and he has suggested that it isn't heridatary but i'm not taking that chance.My thoughts and pray's go out to all of you!Julie http://www.cancercompass.com/message-board/message/all,15880,0.htm Julie44 Wed, 05 Sep 2007 00:00:00 GMT I have read alot on this site about people having a vulvectomy and have recently had my second wide excision of the vulva.  What is the difference between the two? Also, how does the doctor detect if it has spread to your lymph nodes?  http://www.cancercompass.com/message-board/message/all,15690,0.htm snook Tue, 28 Aug 2007 00:00:00 GMT Hello,I am new to this website and have been trying to get a proper diagnosis for my condition for 1 1/2 years.  I am 63 years old, very active and have had a very normal life.  About June of last year I began having redness and itching and lots of pain.  I bought Monostat and every other product on the market, never having had used them before but daughters and friends recommended them: but nothing worked.  I went to my primary doctor in August and was given antibiotics and had numerous blood tests.  They all turned out negative for HPV, warts, herpes, etc.  I came back in a month as my condition was worse and was told I was having an allergic reaction to soap, fragrances, etc.  My Fall trip to Arizoona was in October.  I was still in bad shape so I went to my doctor at Mayos and he treated me for yeast, seven days of fluoncase, it seemed better for about a week, then back.  Home I went and back to my gynocologist and she started giving me creams, yeast pills, anything.  Noone biopsied me and every cream I was given made it redder and hurt more.  In January I went back to AZ for the winter months, saw my Mayo doctor again and he sent me to a gynocologist at Mayos and she did not do a biopsy, three months with her and no biopsy, even though it had been recommended by my internist!  Came back home in May, still in terrible shape, and went to a dermatologist who finally did a biopsy and it came back VIN II.  I've had five surgical procedures since May and my last one consisted of dime size pieces from right, left and pernium area.  Each time I have at least ten stitches and am then given three weeks to recover and off I go for more surgery.  All areas have now progressed to VIN III and we have had no negative edges, ever.  After the shock of these last biopsies, I got my head on straight and am going to try to get into M.D. Anderson for their opinion.  From all I read, noone seems to get better until they have a vulvectomy.  As frightening as that is, I am not as young as some of you and I need for this to be done!   I will enjoy being connected with women going through this, as I know noone nor have I ever heard of this weird condition.  We must keep upbeat and ready to go forward, all of us.  If anyone has been treated at MD Anderson for this condition, I would love to hear from you.  For the others, your treatment and positive results would be appreciated.  We are fortunate that this is external, and we will be cured if we can get the proper treatment, of this I am sure.  http://www.cancercompass.com/message-board/message/all,15654,0.htm luckyme Sun, 26 Aug 2007 00:00:00 GMT HI:I have just been diagnosed with Hidradenoma Papilliferum. This was a small cyst on my vulvar - I had it for about 1 year before my gyno decided it was not going away on it's own and should be removed. He told me not to worry that he was sure it was "nothing". He actually went so far as to diagnose it as a sebaceous cyst prior to sending it to pathology. When the pathology came back he called me personally to explain that it was a very rare but benign sweat gland tumor AND (here's the bad news) the margins were not clean and he needs to remove more of the surrounding area. I have looked this up on the internet and the information is sketchy, at best. I'm confused, and here's why:1.  If these tumors are always benign why are we worried about margins?2.  Can these types of benign tumors turn malignant?Any information would be greatly appreciated. I just lost my mother to Pancreatic Cancer 6 months ago and my father has lymphoma...so I am obviously freaked out. I am 45 years young.Thanks.   http://www.cancercompass.com/message-board/message/all,15133,0.htm Garagegirl Thu, 09 Aug 2007 00:00:00 GMT