CancerCompass message board discussion started by karenthekat on 5/7/2008 http://www.cancercompass.com/message-board/message/all,23812,0.htm Tue, 07 Oct 2008 00:00:00 GMT Tue, 07 Oct 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ 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    karenthekat Wed, 07 May 2008 00:00:00 GMT Hi I'm really sorry you are having such a hard time. I haven't used Aldara yet, but it is on the cards. My Dr explained that it would be terrible, and the way it works is by causing your body to react to the sores etc so it recognises the problem and works to fix it. For some reason, the HPV etc hides in the skin layers, and cant always be detected until the Cell changes. As for smoking, I have never smoked. I supposedly in a small percentage (2%) of women who suprise the Dr, because of not smoking. tuscan Fri, 09 May 2008 00:00:00 GMT Do they give you pain meds or any advice on how you can be more comfortable using these creams?  Its bad enough we have to live with the thought of this coming back. Carol123 Fri, 09 May 2008 00:00:00 GMT Hi , its weird but I don't have HPV Virus. well I have used the Aldara twice now, and I can already feel the spots more than before so I guess that means the skin is starting to get irritated, yipee, I am so tired of this. How much surgery and such have you had to bear? I guess alot more women than I think have this, but it is still not  known about and it is not a cancer you like telling people you have, they always think the weirdest stuff and it makes me feel like you know. I wonder what the % of women do actually have this.TTYL On 5/9/2008 tuscan wrote:Hi I'm really sorry you are having such a hard time. I haven't used Aldara yet, but it is on the cards. My Dr explained that it would be terrible, and the way it works is by causing your body to react to the sores etc so it recognises the problem and works to fix it. For some reason, the HPV etc hides in the skin layers, and cant always be detected until the Cell changes. As for smoking, I have never smoked. I supposedly in a small percentage (2%) of women who suprise the Dr, because of not smoking.  karenthekat Fri, 09 May 2008 00:00:00 GMT I had VINIII and had it excised in 11/07.  I see a gyn oncologist every 3 months.  I see her again 5/08, she also stated that there are "creams" on the market that we could try if needed.  It did sound that it was "when" the time comes.  This is always on the back of my mind and I hate it.  I have tried to reduce the stress in my life "whatever", I work in a very stressful job and there is not much that I can do about that.  I do not smoke, have been married to the same man 32 years and I to do not have HPV.  I love this website and feel more at ease to know that there is some support and there are others going through the same thing  and unfortunately some much worse than I have endured.  I do not tell people the details of this rare female condition, they don't understand, and I just don't want to explain it.  I did go to a walk in health clinic, the nurse asked me my medical history in the last year, when I said that I had been diagnosed with VINIII she looked at me with the deer in the headlight look.  Not even people that deal in the medical field know about this virus. Carol123 Fri, 09 May 2008 00:00:00 GMT Hi there - I am in the UK and by the sounds of it all you ladies are in the US.  I have just started with Aldara (5 sachets in, used the last one on Monday just gone).  I think Aldara is still relatively new over here for the treatment of Vin3.  I had to see my GP yesterday as I was in absolute agony and she tells my that my vulva is badly ulcerated and has asked me to stop using the cream until she gets back to me - she is going to contact my consultant to see what he thinks (which won't be too much I don't think, as he had to take advice from elsewhere before prescribing it for me) and also see if she can get hold of any more 'specialist' type practitioners.   My vin3 is very widespread and I think the only option if this doesn't work is a vulvectomy - which the very thought of this reduces me to tears.  I am apparently quite young to have it and I know what you mean by not wanting to explain to people what you have.  As soon as you mention that it's the wart virus they all get the 'oh yes you must have slept around' look on their faces.  To be honest, I thought that my husband had been doing the very same when I first found out.  The US does seem to be more pioneering in some fields and I wondered if any of you ladies know of other options that may be available?The side effects look horrendous when you simply read about them in the medication leaflet, it took me a fortnight before I started using it!  It is also a contradiction in itself as it tells you not to use it if you have open sores, yet it causes open sores - so is it okay to use on the sores that it causes? (That was hypothetical, I wouldn't use it on the sores).Anyway, I am going all over the place as I didn't plan to be posting messages, just stumbled across the site whilst looking for further info.  It would be great if any of you could post further in response - even if it's just to let me know whether or not you have had success with Aldara, which would give me some hope that all this hassle may be worth it - or have you had worse side effects (there are some horror stories out there as well - esp from patients who have completed the treatment and side effects seem to appear much later).Kind RegardsSally   fatfairforty Wed, 14 May 2008 00:00:00 GMT I'm so glad that you stopped and posted.  I also did not plan to post but being able to discuss this matter with others who understand is healing.  Are you seeing a gyn oncologist?  If not, please see one immediately.  Even though this is "only" VINIII it is very serious.  I don't care if we are in our 20's or in our 60's no one wants a vulvectomy .  It makes me sick when I hear/read that a lady in her 60's doesn't need reconstructive surgery as much as someone younger.  WHAT KIND OF GARBAGE IS THAT?  Losing our female parts is devistating no matter what age.   Just know your not alone.  Carol123 Wed, 14 May 2008 00:00:00 GMT Hi everyone. I had CIN3 in 2004, had a LLETZ procedure, (similar to LEEP i think). Went back for all my follow up colposcopies/smears etc. All ok. Then in Dec 2006, I had HPV DNA test done, it came back positive. I couldn't believe it. The sad thing was, I didn't even know the connection of HPV and CIN/VIN etc Let alone cancer. (Even the advertising for the vaccination doesn't mention HPV) Maybe they should, then most of us wouldn't feel like we are carrying around this stigma. Anyway sorry, getting off track (just get annoyed).Then 1 year later I had another HPV DNA done, it came back negative. MMMM now this is where it gets confusing. I have just had surgery (wide local excision) and biopsies on my vulva for VIN 2/3. Evidently caused by the same HPV, which I tested negative to Jan this year, but the biopsies of my vulva say I have the HPV on my vulva. What I'm getting at is this...if you test negative (via smear/internal test) it doesn't necessarily mean you do not have HPV. I never had any signs of it. The Aldara is supposed to cause sores etc, as it revs up your immune system so it knows where to fight.Usually women who end up with VIN are the ones whose body doesn't seem to fight the HPV (although some do). Causing sores, makes the body seek and heal, hoping that the result is no more HPV or VIN. If you have a really bad outbreak of sores, I believe the Dr's do get you to ease of the amount of treatment. I have also heard, if you dont react, it might not be working. Odd I know, and awful too. But, I think it is a better option than a vulvectomy.Good luck to you all. Keep us posted on how you are. Here's to good health.Hugs   tuscan Thu, 15 May 2008 00:00:00 GMT Ladies,     There is a way to have Vulvar cancer without HPV. It stems from Lichen Sclerosis, a skin condition of the vulva. If you are diagnosed with the condition(with biopsy) you should be biopsied all along to see if and when it develops into cancer. Vulvar cancer is VERY rare but from LS it is extremely rare. ...BUT I'm here. I had a radical vulvectomy and had my lymph nodes removed I had positive nodes on both sides - so it is Stage IV. I had a radical, radiation and chemo. It was hell - but I'm here. My gyno was ignorant about it being possible without HPV. He is a well known gyno in Charlotte and North Carolina. Good Luck!!   Lableme Thu, 19 Jun 2008 00:00:00 GMT Hi Sally and others, I am Karenthekat, just call me Karen, well I am into the end of my first month of Aldara, I am very sore and uncomfortable the day after the application, it feels like I did after my second surgery. Then after a couple of days it gets better, but then it is time for another dose.I just keep thinking this chemo is topical and I could be alot worse and have to have it intravenously, I am also doing Estrace Hormone Cream the same nights as the ALdara, because my vaginal canal is so red, but as you said, the Aldara creates more sores, but I think the Estrace helps it not be so raw, ask you dr about it. The Estrace is done way up with an applicator. I have also been sick some days after the application and had really bad hip aches (that is probably old age) as I am 55, and I do have some osteo.I just get to down because I finally get my life in order after life's disappointments and now dealing with this sucks(excuse me) I am so glad everyone is writing so we are not the only ones.Everybody, keep a chin up and let's talk again.Karen    karenthekat Thu, 19 Jun 2008 00:00:00 GMT its Karen again, just curious, is everybody fair or light complexion and had problems with soaps, could never take a bubble bath etc. even as a small child. I remember always getting rashes from bubble baths, could never use tampax. no femanin products, just dove for sensitive skin. Karen karenthekat Thu, 19 Jun 2008 00:00:00 GMT Hi, Karen!  My name is Donna.  I am 52 years old and have been diagnosed with vaginal and vulvar dysplasia, as well as the lichen sclerosis previously spoken of in this message discussion.  Although I have not used Aldara, my Effudex treatment sounds very similar .....  created open sores, burning, and escruciating pain.  I am fair complected, strawberry blonde hair .... well, before coloring to hide gray (HA!) ... and freckles.  My gyn/onc prescribed Lidocaine, which numbs the area and stops itching.  This is applied topically as needed.  He also suggested Diaparene as a protective agent.  Who would have ever thought I would be buying Diaparene at age  52, let alone to use on myself.  Both of these did help, but there was still pain.  I had so many sores after the first three treatments that I had to stop for a month.  In any event, I return on 7/14 to see if the treatment worked, and if not, what is the next step.  I am scared and already frustrated with the pain from my treatment.  Reading about treatments for this disease is very, very scary and stressful.  Thanks to everyone who shares on this forum.  I makes me feel I'm not alone. trulyblue Fri, 20 Jun 2008 00:00:00 GMT I'm so glad I found this website!  I have been battling vulvar issues for about a year now and been through so many doctors!  I finally found one that has been helping me.  My first visit she was pretty sure that I had LS so she prescribed temovate and had me follow up after 2 months of using it.  It did help with the irritation and symptoms a lot.  When I went back early this week she decided to do a biopsy because the lesion I have had not healed as well as she would have liked.  It is on the inside of my right labia.  She called me last night and told me that there were pre cancer cells on the biopsy and that HPV also showed up.  It was not what I expected to hear.  I don't think she was either.  I am only 33 and she said cancer from LS would be extremely rare in someone my age but since it is only pre cancer I don't think she has gotten too excited about it at this point.  She prescribed the aldara cream and I am supposed to start on Monday.   Now I have all of kinds of questions from reading all of this information.  Last year at my pap they did not detect any HPV.  When I read about Aldara, it talked about genital wart treatment so that confused me with the HPV but she and the other doctors did not see any warts and that type of HPV is also not cancerous so I don't think that's what I have? I need to find out what strain it is. I also did not verify with her the LS diagnosis.  I have another message into her about all of this.  I know the aldara is going to be painful but I just want this to go away and if this will do it, then that could really be a good thing.  At this point it is not cancer so if we can get it under control now, I suppose there will be a lot less worries later.  I'm trying not to stress too much.  I know about how hard it is to talk about it.  I have friends that don't even want to hear about it they are so squeamish.  Bottom line is that it can happen to anyone.  I am a professional single but have not slept with many people and do not smoke at all.  I'm just thankful that I stayed persistent and found a good doctor.  She's the 5th one I've seen.  Most of the others did not think there was anything wrong or misdiagnosed me.  At this point I guess I'm just looking for support.  Heather22 Fri, 11 Jul 2008 00:00:00 GMT Hi to all, I haven't been on the site in a while and was surprised all of the reponses, well I have done the aldara form about 2 1/2 months, the only time I am very uncomfortable is after I put it on and the next day, it is the same syptoms that brought me to the doctor, itching, burning etc.Well we will see if it worked I see the dr on August 8 I have a feeling I will still have the spots I am just feeling very negative right now. Last time I went to the doctor he asked if I was smoking again, I was totally insulted, it has been a few years and never again.and besides alot of you never smoked, My dad has bladder cancer caused by the same chemical and he never smoked. It gets very depressing because your sex life is definately different, intercourse is few and far between because I just bleed from the tenderness, I have the greatest husband but I feel so bad for him. I know there are other things to do, but you know men still like intercourse. Well everybody keep writing in it does lift spirits, and we all need each other because other people just don't get it without making judgements that they know nothing about.Love to all, KarentheKathe never smoked.  karenthekat Sun, 27 Jul 2008 00:00:00 GMT I am just following up on how things are going.  I just went back to my doctor after about 6 weeks of aldara treatments.  The side effects were not very fun (a lot of itching and burning-at times unbearable).  She saw a lot of improvement in just that amount of time.  I have to use it twice a week for another month and then she is going to do a colopscopy to make sure that everything looks normal.  If it does, I would not have to follow up for another 6 months. She told me that they are finding aldara to be a very effective treatment for LS and vulvar cancer issues.  Much more effective than laser treatments or surgery.  It is also less invasive, less expensive and not disfiguring.  Yes, it takes time and is not fun for the weeks that you are using it but if it works, it is worth the pain.  I don't think the other options available would be much better, if not worse.  She is very optimistic that once I get through this, I may not have to use anything in the future and could go back to normal.  I feel very fortunate that my doctor knew about aldara as option for me.  On the days between treatments, my body is actually starting to feel normal and I feel like I'm starting to get back to my life again.  Heather22 Wed, 20 Aug 2008 00:00:00 GMT