Join our vulvar cancer forum today for helpful information, support and feedback. Research treatment methods, locate cancer resources and more at CancerCompass.com. http://www.cancercompass.com/message-board/cancers/gynecological-cancers/vulvar-cancer/1,0,119,38,74.htm Tue, 24 Nov 2009 00:00:00 GMT Tue, 24 Nov 2009 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ I want to share my story and maybe get some feedback/info about what I am going through. I am 29 years old with 3 kids and I have a history of gyno problems. Nothing too severe, just ovarian cysts, endometriosis, adhesions, and adenomyosis. I had a complete hysterectomy in 2007 and even though my ovaries are full of cysts they left them due to my age. Two years went by and I finally decided to have an annual because I was in a lot of pain again and some bleeding( which I shouldn't have since I have no uterus). The doctor decided to do a laparoscopy to find out if I had adhesions again. During the exam she found a white spot on my vulva and did a biopsy, telling me she thought I had warts. I was freaked out because who wants to find out they have warts 5 years into their marriage? Not to mention my husband is in the military and as much as we try not to, we do worry when they are deployed....Anyways, the biopsy came back as VIN 3. I had no idea what VIN was!! That same day my PAP came back abnormal and they told me I had HPV. What a whirlwind I felt like I was in! My husband was deployed at the time so I couldn't even talk to him until he called me. To be honest I felt relieved that it wasn't warts, but little did I know how emotional and scary this ordeal was going to be. The doctor did a colposcopy and found more lesions than were visible and told me I had to have an excision and that they would do it at the same time as my laparoscopy. So, a couple weeks later, after getting my husband home on emergency leave, I had my surgery. They removed some of my labia, perineum, an adhesion that had develpoed from the scar from my hysterectomy, and a decent sized cyst on one of my ovaries.  I recovered nicely, but couldn't walk or sit properly for about 6 weeks. My frustration with my doctor started at my post op, when she told me that she did NOT get clear margins...on purpose!! I asked why and she told me she wants me to be able to have sex. Then she looked at me and said "Well, I guess you can't have sex if you're dead though, so we'll keep an eye on it and hopefully your immune system will kick in and take care of it for us." WHY DIDN"T SHE TELL ME THIS BEFORE THE SURGERY?!?! She scheduled an appt for another colposcopy 6 months later and told me I have to quit smoking. As some of you know, it is not easy to quit smoking when you are dealing with the stress of this even though you know you should. So, here I am, 4 months later. I have been doing self exams about once a month since my surgery and a month ago found a couple more lesions. I called the doctor and they told me I need to be seen right away. Their version of right away means 3 weeks. So I am waiting...my appt is on Nov. 3rd. The white lesions that I see are spreading and I am scared. What are they going to find? Could it be cancer now? The doctor told me that it won't become invasive for atleast 5 years, but they don't even know how long I have had VIN since it had been over 2 years since I had an exam and they could have missed it then. And just because they say it could take 5 years doesn't mean it will for everyone right? I am starting to wonder if I should have been referred to an oncologist because it soesn't seem like my doctor knows a whole lot about VIN even though she's a gyno specialist. I am just very scared and frustrated and would like to hear real things from real women who have or are going through the same thing. Thanks for taking the time to read my story.... http://www.cancercompass.com/message-board/message/all,41049,0.htm ArielM Tue, 27 Oct 2009 00:00:00 GMT hi again forgots to mention that i am also a very heavy smoker and i know i need to give up but also very hard when i am soooo stressed with this. http://www.cancercompass.com/message-board/message/all,40907,0.htm stars2008 Wed, 21 Oct 2009 00:00:00 GMT I was recently diagnosed with cancer of the vulva.  It had affected only one of my lymph groin nodes, but all were removed.  I ultimately developed lymphodema.  I have been having a difficult time finding proper compression stockings, and on a recent long flight, where my therapist told me to wear thigh high stockings, the lymph fluid accumulated in my groin area.  I recently read about a lymph node replacement surgery being done, but seemed to concentrate on breast cancer patients.  Does anyone know more about this? http://www.cancercompass.com/message-board/message/all,40185,0.htm Sharonb1 Sun, 27 Sep 2009 00:00:00 GMT Please help me if you can! I have a loved one who had a vulvectomy this year and had 25 radiation treatments following due to cancer in lymph nodes.... she has horrible burning complications in her groins that has lasted several months now.... her oncologist has not been able to help her..... has anyone else experienced this??? Thanks for your reply! Gladiolas http://www.cancercompass.com/message-board/message/all,39812,0.htm gladiolas Sun, 13 Sep 2009 00:00:00 GMT Hi, I'm 18 years old and just found out my dad has rectal cancer. He refuses treatment, and can't afford it. I don't know what to do, I've been crying for three hours. Please help me, I need advice and kind words of support. Please http://www.cancercompass.com/message-board/message/all,39734,0.htm hillaryB Thu, 10 Sep 2009 00:00:00 GMT Hello,I have a flat brown/black area about 1" diameter. It is irregular in shape. It doesn't hurt, bleed or cause any problems. It started out as a very small spot, about a 1cm, about a year and a half ago. It looks very simaler to #11 in this photo http://www.freewebs.com/premonvandam/Skin%20Cancer.jpg It is located about an 2" down from the top of my hair line on my vulva. (Think about where an horizontal c-section scar would be and move 2" downward) I'm confused because of the area it's in and it really doesn't look like any of the vulvar cancer I've seen. It looks like skin cancer but that area has never got exposed to the sun.I know I have an Hpv Virus, not sure which type I have but I have only had 2 small warts come up at different times in my life and my doctor used acid to remove them. I have been in a monogamous realationship for over 20 years(I'm 38) and I havn't had any problems since my early twenties when about twice I was diagnosed with dsypalsia and had a leep & colpoloscomy<sp?>and then tested neg. every year since.Can anyone offer some insight to what type of cancer it could be or better yet ease my mind and tell me there's nothing to worry about?Please don't just tell me to see my GP. He's been my doctor for over 10 years and I would just be extremly uncomfortable with him looking at that area. With my insurance I can go straight to a specialist. But what kind do I choose? I lost my gyno and havn't found a new one yet so it's been about a year an a half since I've been for pap. Should I just go straight to a gyno oncoligist, a reg. oncoligist or what? I'm really confused and worried and with everything else going on in my life I havn't addressed it but I'm getting kinda scared not too. My most biggest concern of all is that I only have a couple of months before I have weightloss surgery, another life saving procedure for me since I have many co-morbidties included diabetes and sleep apnea and I'm worried if I get this thing checked out before I have that either the ins. company or my surgeon may stall that surgery and I can't take that risk.-Sweedee    http://www.cancercompass.com/message-board/message/all,39236,0.htm Sweedee Sat, 22 Aug 2009 00:00:00 GMT hi i'm a 28 year old female, on saturday night i noticed what felt like a pimple on near my pubic area so i asked my partner to have a look he said yeah it's just a pimple, but also noticed about 6-7 little black raised spots on both sides of my vulva i been very itchy and sore down there lately but hadn't really been worried about it now i'm very worried, is anyone able to help everything i read keeps say cancer, cancer, but surly there has to be other reasonsthanks http://www.cancercompass.com/message-board/message/all,39063,0.htm gerry1981 Sun, 16 Aug 2009 00:00:00 GMT I was diagnosed with a vulvar lesion and am now 1 week post op.I am wondering if anyone has had bowel problems after their surgery and if so how long did it take them to have their first bowel movement after surgery.I had my surgery 7 days ago and have not had a bowel movement for 9 days now.i am starting to get worried about that. http://www.cancercompass.com/message-board/message/all,38894,0.htm cupcake35 Mon, 10 Aug 2009 00:00:00 GMT I had a biopsy for VIN a month ago which was contained to a small area size of a pea. SInce then the problem has spread like wildfire.Doea anyone have any info for me. I prefer alternative treatments especially after the spread. http://www.cancercompass.com/message-board/message/all,38204,0.htm Hatherley Sun, 19 Jul 2009 00:00:00 GMT So I had surgery on june 10th for VIN3 and I'm healing well from the partial vulvectomy. Sutures all gone, healing wonderful and hardly any visable scaring. Well low and behold now I have started with some symptoms yet again and I'm nervous as all get out. I've been itching like crazy on the opposite side that the surgery was on. I found a reddened area that is darker on the outer parameter then the center and is about the size of a dime but a bit smaller. Also I'm extremely sore just above my urethra. It almost feels as if my clothing is rubbing and making me tender but it's all the time. I called the doc and he wants to see me on monday the 20th of july. could this possibly happening already? It don't make sense. I'm not sure if the symptoms could be the vin again or just something different. It's so frustrating and worrying. I wasn't supposed to go back for my final visit until august 5th but I couldnt stand not knowing......... Please pray that it's nothing........ I'm freakin out again....... http://www.cancercompass.com/message-board/message/all,38152,0.htm prkiluci Fri, 17 Jul 2009 00:00:00 GMT Anyone experience their symptoms getting worse after a biopsy?I have noticed growth of an untouched spot and itching all over, not sure it the vinegar just irritated everything, but it has been 4 days since.I guess all I can do is wait for the call, doc said she didn't think it was VIN, could not say with 100% certainty it looked more like LS or cancer or vise versa. But thought it would be one of the 2.  http://www.cancercompass.com/message-board/message/all,37590,0.htm RRLLL Mon, 29 Jun 2009 00:00:00 GMT I had my first abnormal pap smear when I was only 16 years old. I have gone through numerous colposcopies and a LEEP procedure. While I was in for a three month follow up pap smear, my gyno noticed a small spot. I hadn't noticed it and wasn't really in an area that I could see. She biopsied it on the spot and it showed VIN 1. She had me on Aldara for 4 months (which I agree with others on here was absolutely horrible!) and then had me come back for a colposcopy of the vulva. This was much worse for me than the cervical ones and I ended up with a mild cellulitis a week postop. It was horrible. She put me back on Aldara once I healed, but I just couldn't do it. After one week I was so raw that my skin was cracking and bleeding when I had to touch the area. I went back in for my 3 month pap smear and that spot was completely gone! I finally, for the first time in three years had two clean pap smears back to back. My doctor was so excited that I was finally going to be able to be like a "normal" woman and just have my annual... Well on Memorial Day I found a light pink/white spot. I was devastated. I called my doctor the next day and scheduled an appointment. I looked at the spot everyday for two weeks until I went in, hoping that it would just go away. I got in to the doctor two weeks later and the nurse tells me that with my history of HPV I most likely just have genital warts and that they are easy to get rid of. My gyno came in and did an exam and informed me that the one spot had become 5 or more in two weeks time and that it was definitely not genital warts. The VIN was back and it's back with definite vengeance. It appears to be very aggressive and "highly suspicious". I'm completely torn apart about it. I have a colposcopy of all 5 (or more) spots scheduled for the 9th of July. My doctor is worried that a month could make a difference so I'm on a waiting list and could be called in any day. I'm so terrified of what she will find. I'm 19 and already have one scar and will in the very least add 5 to it. I'm really worried about my colpo. The first one was absolutely awful and it was only one spot.. how is 5 spots going to feel? If it comes back as VIN2 she is going to send me to get it lasered. Has anyone had the laser treatment that could give me some advice? I know I'm sort of jumping the gun, but I'm so scared. I've had to deal with issues for three years and really just want everything to go away. From the information that I've gotten from my doctor, it's not just going to disappear. The emotional toll that things like this take on a person is unbelievable... I've been in a relationship for almost two years (we live together) and right now I am refusing to have any sexual contact. I feel horrible. I feel broken and unattractive, let alone sexy. When I look down at myself all I see are these big round spots starring back at me!! How do you get passed this?No one I know has ever had to deal with an issue like this and therefore they try and avoid the topic all together. I could really use any advice from anyone who is going through this right now. I'm really scared. http://www.cancercompass.com/message-board/message/all,37213,0.htm JessiLynn Tue, 16 Jun 2009 00:00:00 GMT I had my surgery to remove stage 3 VIN on the 10th of June. All went as planned and now I await my follow up appt on the 17th to see how everything is comming along and the results of the pathology report as to if he was able to get it all or not. I'm feeling ok but very sore at times. I think the worst of it all is not being able to do anything until my follow up appt. I feel like im in a slump and becomming depressed through it all. I'm scared to death that patho will come back that he missed some. It's driving me nuts.  This whole ordeal is so trying on your mind and body. I have to say that I feel like part of me is missing now. This may sound sorta in depth but when he did the surgery and removed part of the vulva the vaginal opening is so small now I feel like I will never have a normal sex life again. Has anyone else felt this way?  I know the doc said that there would be some slight deformation but I thought he meant on the outside. Maybe I'm just worrying to much but this whole deal has me a wreck..... I guess I shouldn't be so concerned but I am.... I'm just hoping that the appt on wed comes up good.... maybe that is my main underlying worry.. http://www.cancercompass.com/message-board/message/all,37166,0.htm prkiluci Mon, 15 Jun 2009 00:00:00 GMT Hi all. I recently found out that I have VIN 3. The doctor I'm going to is planning a partial vulvectomy on the 10th of June. I'm so nervous because I haven't yet talked withhim about what to expect post op. He seems to be making light of it all and saying that it's a quick recovery and a simple procedure. Could someone help me out and give me some ideas on what to expect after my surgery.? http://www.cancercompass.com/message-board/message/all,36514,0.htm prkiluci Tue, 26 May 2009 00:00:00 GMT I am 3 months post op for vin 3 when i have had a wide excision of the vulva, on my check up biopsy's have been taken again, is it normal that it can come back so soon, how many times can i keep having bits removed, is there any way of keeping it at bay, feeling very confused.lorraine http://www.cancercompass.com/message-board/message/all,36463,0.htm loomorg Sun, 24 May 2009 00:00:00 GMT hi.  i found this looking for some support.  feeling alone, probably like the rest of you.  i was diagnosed with vin 3 in september and had multiple small areas removed at the end of september with laser and surgical excision.  i had a follow up in february, the were watching one "little" spot. i just had a pap with my regular gyne, and she did a biopsy of a small area that came back as vin 3.  i'll see her on monday for a vulvoscopy, and she'll e-mail my oncologist in the meantime.  don't know what's next, but i feel like i'm being chased by cancer.  i've had physical difficulty with having sex my whole life, and now i'm convinced i was never supposed to have it.  stopping now wouldn't make a difference i guess.  anyway, i just needed to find somewhere to spill. http://www.cancercompass.com/message-board/message/all,36083,0.htm Maisha Tue, 12 May 2009 00:00:00 GMT Hi all,Just found this website and reading up on Aldara cream. I was prescibed this by my oncologist/gyno 2 months ago after having 3 biopsies on and around my vulvar, After the last one it still came back showing that I was between VIN1 & Vin2 so my doc wanted me try Aldara thank god for medical insurance this stuff was $340.00 for a month supply. Anyways I was suppose to use it MON/WED/FRIDAY by the time i made it to Friday i was so swollen/red/and had these little sores that were so painful I stopped using it- I know my doc said this could happen and to just stop till it healed then try again- I just cant get myself to do it again. I compare the pain and soreness to same as when I had the biopsies. I havent called the doc yet to tell him but with all the things i have read on this stuff i am so scared to use it again.But then i hear people that have had good turnouts using it, I dont know what to do now. is there any of you out there going thru the same as me. I am 49 which nowadays is not old lol......thanks for listening. http://www.cancercompass.com/message-board/message/all,35937,0.htm magarita1959 Thu, 07 May 2009 00:00:00 GMT I am so elated to write this news to you all.First of all if you have not read the first post I posted in here,you need to read it and then read this post.I am giving you updates on our progress as time goes by.My daughter has been on the DIM  for over a month now,we had a laser appointment on the 30th of April and we canceled it.The gyno onco doctor advised us to come in for a second biopsy instead.We went for the biopsy yesterday,the doctor could not believe it when she saw that the warts have all almost disappeared,she said that she could still see some dysplasia throught he scope.But considering that my daughter has not completed the treatment with the DIM yet, we expect the dysplasia to completely disappear by then.I gave the doctor information on the Bioresponse that my daughter is taking,also made her copies of the studies being done at the National Cancer Institute with the DIM,she was very receptive (something doctors are not if the product is not a drug),and wants my daughter to finish the DIM ,which is two more months,before we do any laser. I am the happiest mother in the world,this is the best thing that ever happened to me since my daughter was born. My daughter is also ecstatic,she was some what depressed before, when we found out she needed to return for the laser.I remember her telling me that she was even contemplating dropping out of college,she really believed that this would turn into cancer and that she would die.Of course I always reassured her that this is a treatable condition and that the survival rate is very high,I believe 96 to 98 %. Needless to say,it must be very depressing to be only 20 and to have a vulvectomy.My daughter has been through so much, and I thank God that we have found a treatment for this.After she will have  finished the three months on DIM,then she will be on a maintance dose to keep the virus from turning the skin cells into precancerous cells.If anyone has any questions I would be extremely willing to help you with what we know and what we have done.We hope that others can also benefit from our experience.Feel free to write me at --Message edited by CancerCompass staff. For personal protection, email address removed. Consider private reply. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html-- http://www.cancercompass.com/message-board/message/all,35864,0.htm sofiaroma Tue, 05 May 2009 00:00:00 GMT My name is Lina and I have posted here before,this is my daughter's story  and I want to share it with you all because there is hope.A little over a year ago when my daughter was about to have a partial vulvectomy with a skin graft harvested from her inner thigh. Needless to say,you all can imagine what we went through.At only 20 years old she was facing a life changing experience, a trauma at the physical level and sexual level. Following a two hours surgery planned and executed  by two doctors,the gynecologist oncologist and a plastic surgeon,my daughter spent six days in the hospital bed.She was not allowed to get up for fear that the skin graft would come disattached and not take.Of course I spent every minute at her bed side tending to her and asking God why not me instead of her,she is in the prome of her life. I cannot begin to tell you my heart was broken.After her release she was not able to drive for two weeks and push or pull anything heavy,she basically stayed off from work for about a month.In the mean time I was hard at work,researching all kinds of medical papers and literature I could find on the web,I aimed at medical data.I remember sitting at my computer for entire days on my days off and  for entire nights after coming home from work.  I kept on running into medical data found on Pub Med and other reputable sites on a substance called DIM.I researched more and more and ended up purchasing the product which is under the name Bioresponse, I even called the company and was able to get in touch with doctor Zeligs who is anMd,he formulated the product.I was lucky to get to talk to him and get a protocol with the amounts to take for my daughter's condition. At the time my daughter was doing well,the surgery had turned out great,the lesions were gone,I encouraged her to take the product for maintanance to prevent a recurrence but she did not listen.This was in March of 2008,and all the following visits at the doctor showed no VIN. A month ago  we went for the regular visit and the doctor felt she needed to take some biopsies because there were quiet a few little bumps that looked suspiscious she said.My daughter thought this were bumps caused by shaving but she was wrong. The biopsies came back positive for VIN I and VIN II on her pubic area,which was completely covered with tiny little bumps. we returned to the doctor to see what to do about this and the doctor suggested the laser treatments,which would have to be divided in four sessions given the very extensive area.Needless to say,I went back to defense mode.I harnessed what I had learned from my research last year. I printed out the protocol for the Bioresponse that doctor Zeligs had given me back then,I put it on the fridge and told my daughter that the only way to know if this worked was to try it. It has been fifteen days since she started taking it and the warts have shrunk at least by 50%. Her appointment for the first laser treatment is on April 30th and I hope we will be canceling it. the protocol the doctor gave me was for DIM 150  to take six capsules a day for one month  and then go down to 4 capsules for two more months.If you decide to try this regimen,please follow it religiously.I even call my daughter from work to remind her to take it.Now remember that they have different dosage of DIM and the one she is taking is the DIM 150.Also don't make the mistake to purchase an other brand to save money, Bioresponse is patented to work and is used by the National cancer Institute for their trials.DIM stands for 3,3'diindolylmethane which is a substance found in brassica vegetables,cabbage basically.But to inhibit the virus with the vegetable you would have to eat like three shopping carts full a day. The bioresponse formulated by Dr.Zeligs is being used by the National Cancer Institute for several studies being done on conditions caused by the Hpv virus.I wanted to share our story with all of you,I know how you feel,there is hardly any help or much information on this condition so I hope I am bringing some hope in your life.I will pst updates to let you know how the treatment is progressing. Below is a link to the fsome of the medical papers written by Dr Zeligs and other doctors.God bless you,Lina http://www.dimfaq.com/site/HPV.htm   http://www.cancercompass.com/message-board/message/all,35323,0.htm sofiaroma Wed, 15 Apr 2009 00:00:00 GMT Hello,I had a modified radical vulvectomy just over 2 years ago followed by pelvic radiation for 5 and a half weeks. I have been feeling very lucky as both my gyn and my radiation oncologist's stated that if my cancer were to recur it most likely would be in the first two years. And so far all is clear, sort of. At the end of Feb. during my shower I felt a small bump on the surgical side in what's left of the fold of the labia. It seems to be along the incision line. Since I couldn/t get in to see my gyn until yesterday the bump turned into a lump (size of a pea) and it felt like it had grown underneath the skin..My gyn looked at it, prodded and poked and she thinks that it is scar tissue. She did not do a biopsy. She said to let her know if anything changes and I go back in 4 months. Was I crazy not to insist on a biopsy? I've already lived with it for over a month so I guess I can do another 4 months. I just get nervous when a doctor says "I think it is such and such" instead of "I know it is this or that". Any and all thoughts would be appreciated. Thanks,CeCe http://www.cancercompass.com/message-board/message/all,34800,0.htm Teddys_Mom Tue, 31 Mar 2009 00:00:00 GMT anyone i have had aldera cream 4 me a nightmare had pdt had i known would not have gone ther apparently had a bad reaction now waiting for vulvectomy just think before you decide http://www.cancercompass.com/message-board/message/all,34739,0.htm Bevjune Sun, 29 Mar 2009 00:00:00 GMT Hi, everyone. My mom just had a partial vulvectomy this morning, and I am wondering if anyone here has had one, or has had a family member have one. What was the recovery like?I think my mother would appreciate it if anyone would like to keep in touch, so just let me know.Thanks. http://www.cancercompass.com/message-board/message/all,34555,0.htm michaelr4jc Tue, 24 Mar 2009 00:00:00 GMT HiJust found this site when looking for further information for VIN3. I`m 58 and am having surgery April 7th to remove affected skin. I was first dignosed with vin3 november 2007, Further surgery August 2008, again Christmas 2008. Can`t believe it is only 3 and 1/2 months later i need it again.  I am terrified that it is going to turn to cancer before I have the op. Unfortunately I have a very unsupmpathetic boss (headteacher) who is making a fuss about time off work, so this adds to stress.  He has even hinted at redundancy!  Does anyone know of anything I can do to boost my immune system?  Trying cruciferous vegetable like broccoli, cabbage, kale etc.  Also one glass a day of full bodied red wine. I have a brilliant consultant surgeon who is now conducting extensive research into VIN which includes trying to grow VIN cells in laboratory. This is the first time I have shared this experience outside of my family. My children are so worried. http://www.cancercompass.com/message-board/message/all,34045,0.htm AnnieV Tue, 10 Mar 2009 00:00:00 GMT I was diagnosed with VIN2, had a partial vulvectomy. Doc said they got it all. Within one year it was back, had surgery again, this time it was VIN3.Now, one year later, it's back again. I see my gyno oncologist March 18th, I am going to refuse another surgery. If I had children, I'd fight it tooth and nail.Can anyone tell me if VIN keeps coming back with them? Also, what they did?I need to know if anyone is in "the same boat?" I would really like any input that you can give.Thank you,Debra http://www.cancercompass.com/message-board/message/all,33872,0.htm debra2 Thu, 05 Mar 2009 00:00:00 GMT  can someone help me?is it more serious to have metastatic papillary,and is this something to watch more carfully? she had one recurance in thyroid bed and said it was a new occurance and now has 3 centermeter node in submandibular node that they  have benn watching for a year  they also say she is not responsive to131 she had one dose 150 milicures after the first surgery but not the second surgery http://www.cancercompass.com/message-board/message/all,33880,0.htm stillhaveit Thu, 05 Mar 2009 00:00:00 GMT