Latest messages for CancerCompass discussion http://www.cancercompass.com/message-board/message/all,37213,0.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 just want to thank everyone for their well wishes and encouraging words. No one really understands what it is like to deal with all this. This is honestly the only place that I have been able to completely vent. No one else really understands what I'm going through and the worries that I have. So thank you again! I have yet to have my colpo. I was scheduled for the 9th but as of today (the 7th!), I am now going in TOMORROW! I haven't had time to really start freaking out about it. I'm beginning to. I'm sure tomorrow come 2:00 I'm going to be a wreck! I went ahead and had my doctor call in a script for Vicodin. I was told to take one about 30 minutes prior to my appointment. She and I both don't want to have to deal with the pain and infection of the last biopsy.Since my last post, the itching and burning have really kicked up! I've had random sharp pains from two of the spots, but can't feel any lump or cyst near them.. hopefully a good thing! I have noticed them growing larger - something I was warned would happen.I will make a post whenever I can. I should have the results by the end of next week. Thank you again for all the encouragement. Wish me luck! JessiLynn Tue, 07 Jul 2009 00:00:00 GMT Hi Jess,   I'm sorry to hear you are having such a rough time.  You are so young to be dealing with such an enormous problem.  I hope you have a mother or someone close to talk to.  If not, i can give you my email address and we can chat sometime.                I am 38yo. and was 1st. dx 5yrs. ago with vin 2 and my dr. did a wide local excision and i went on with my life...hoping that it would never come back.  Well, i felt like something "just wasn't right" and went to see my gyno and after talking he went ahead and did a colpo and found areas that were "not as angry as last time" as he put it.  Same side, left labia minora and a new spot on my clitoris(yippie).         He did not want to mess around with it this time so I went to a gyn oncologist and he did a colpo and he put me on aldara.  I had not been on it before and i was reluctant to try it but he said it was better than the laser because i had vin 1 and thought the best thing was to do the aldara.  (I too read about the side effects on here and did not like them).   He told me to use it 2 times a week for 3 wks alternating sides of my vulva. After my third dose, first 2 did not bother me, but now  I am raw with sores and itching like crazy and I have to use it 2 more times next week and then I go back to see dr. for another colpo on july 7 and hopefully it is all gone.      Back to the laser, my gyno did tell me that it was a painful recovery considering the location and that is not the best tx for this condition.  He said surgery or aldara over laser, but that just could be his preference.  My gyno oncologist was involved in many studies with vin and had specialized training so i feel pretty confident in his decision for my tx.    You are in my prayers and remember you are not alone.  Try to eat healthy and don't smoke.  My gyno said that smoking is a very high risk factor for vin for some reason. Let us know how your test comes out on the 9th.  Mishelley   mishelley Fri, 19 Jun 2009 00:00:00 GMT First, are you seeing a gyn oncologist?  Please make sure that your doctor has experinces with VIN and the lastest treatments.  Read the posts there are other alternatives available.There are wonderful ladies on this site that has been through this...YOU ARE NOT ALONE.  I had VIN3 removed 11/07.  I just found a couple spots that I will have checked out in July...I am scared.  I will not talk to anyone about this except here on this site...no one understands or knows about VIN and the looks you get when you try to explain it.  Please if you need someone to talk to, write us. Carol123 Wed, 17 Jun 2009 00:00:00 GMT  On 6/16/2009 JessiLynn wrote: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. Hey hun I can totally relate to how your feeling. I won't drag out my history on you but I will say when I was in my early 20's I wass diagnosed with, at that time, what the called moderate dyspasia, which was what is now called vin 2. I had the laser surgry done and recovered nicely. I can't quite remember how sore or anything I was at that time but I can recall it being uncomfortable. Since then I was fine up til 2 months ago when I went to have a small lump checked to see if it was a cyst. Came to find out after a biopsy and the doc finding  a small white lesion next to it that i never saw, I found out I had stage 3 or vin 3. I just on the 10th of this month went through a partial vulvectomy.  I so can understand why your scared and worried and the underlying feeling of not wanting to have intercourse, and feeling like you do. I hit a small depression two days after my surgery and I'm still in that funk. I go back todayfor my 1 week post up checkup and to get the results of my pathology report to see if he got it all or not. I would never say that laser is less of a surgery then what I had but I think if i had to choose betweenthe two laser would have been my choice.  I did a ton of research on  the computer and found some sites that gave details of the laser procedure and what to expect after the surgery.  There are also some postings on here I beleive that give info also. Pleae remember your a strong person and if you went through this once you can do it again. I know it's hard to concentrate, be yourself, and cope when your so worried. I do it daily myself.  If you ever want to talk I'd be more then happy to give you my email address. Some of the responses in here take a bit to get but they are very supportive by all means........ Pleae keep us posted. and I'm thinking of you....... prkiluci Wed, 17 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. JessiLynn Tue, 16 Jun 2009 00:00:00 GMT