Join our vaginal cancer forum at CancerCompass.com to find resources and helpful information about a variety of relevant issues, from treatment methods to cancer research. http://www.cancercompass.com/message-board/cancers/gynecological-cancers/vaginal-cancer/1,0,119,38,32.htm Mon, 23 Nov 2009 00:00:00 GMT Mon, 23 Nov 2009 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ I had laser surgery on 3/23/09 for Stage 0 Vaginal Cancer/VAIN III.  I had my first post-op pap smear on 6/24/09.  The results indicated mild dysplasia.  As a result of the abnormal pap, I had another colposcopy today.  My oncologist observed several abnormal lesions, (to his surprise) thus prescribing Efudex once a week for 3 months.  I would appreciate any helpful comments or what to expect from those who have experienced using Efudex.  I would be most grateful for your input asap as I start my first treatment on Monday.BKK-NC  http://www.cancercompass.com/message-board/message/all,38740,0.htm bkk1128 Wed, 05 Aug 2009 00:00:00 GMT On the message I just sent regarding Efudex, the repeat pap date should have been 7/24/09 instead of 6/24/09.  Again, I would appreciate your comments.BKK-NC http://www.cancercompass.com/message-board/message/all,38741,0.htm bkk1128 Wed, 05 Aug 2009 00:00:00 GMT I have already posted two messages on this forum under the heading of "hope is here.This message goes to all those women that have not only VIN but also vaginal cancer or cervical cancer caused by HPV.Because they can take what my daughter took to make the Hpv regress.Please read my other posts to see what my daughter has endured.I am elated to post this news today,my daughters biopsy is negative.There is no VIN left. I have prayed about this,but I have to honestly say that if I hadn't researched the DIM and if I hadn't found the courage to call the Doctor who has formulated the DIM product,I would have never gotton the advice on the dosage,which is a higher dosage for people for VIN.I know that all this sounds too good to be true but it is true,I would have known that this substance could have regressed the VIN III back when my daughter got the partial vulvectomy,I would have gave it to her then.But I am thankful for the fact that we had the chance to fight this and not to have to endure the laser or more surgery. She is still taking the DIM for two months in lower dosages and then she will take just one capsule a day for mantanance . I hope that anyone on this forum with VIN or dysplasia of the cervix or vagina,would give it a shot at this.It is better then Aldara because since you take it by mouth it treats every place that could have dysplasia and the doctor does not see.Additionally it has no side effects,the only think is that you have to take it everyday twice a day.I call my daughter from work to make sure she took it,but I have to say she had a wake up call when the VIN returned and since then she has been taking the product religiously.We consider ourselfs lucky,blessed however you want to call it,sometimes life is what you make it and we decided to take control on this one. http://www.cancercompass.com/message-board/message/all,36038,0.htm sofiaroma Mon, 11 May 2009 00:00:00 GMT I was reading through all these posts to find similarities.  However I am amazed at the people in the subject colum crying out for help and the replies are not as fast if any at all. But then we sometimes do private replies too... But for those that have cried out and those that have replied and have been here in our situation....I know how scary it is.   I promise to followup on the progress of my VAIN III and I have Lupus/Sjogrens Syndrome to boot and have been on immune suppressants for 2 years now.  I go to an Oncologist 4/30 which gives me 2 weeks of not knowing time.  So during this time I want all of you to know that WE WILL ALL BE OKAY!  Pray and hold our friendships and in 5 years or so we need to get together because we are survivors and we can beat this.  Even though this is an uncomon thing...and VERY personal...we will all make it through hope, faith and love~!  and we will support each other every step of the way.  And for those of you that posted earlier requests and threads.  PLEASE follow up and let us know your outcome.  We need each other whether it be good bad or ugly....we still need each other.    I love all of you no matter who you are and we can do this together.  Feel free to email me anytime.  Much love and LOTS of Fight left!Wendy http://www.cancercompass.com/message-board/message/all,35390,0.htm wendylou Sat, 18 Apr 2009 00:00:00 GMT Does anyone know the recovery time after laser surgery for vaginal cancer?  Has anyone experienced it?  If so, please reply ASAP.  Thanks.BKK    http://www.cancercompass.com/message-board/message/all,33434,0.htm bkk1128 Sat, 21 Feb 2009 00:00:00 GMT I have had mild vaginal dysplasia (I've had a hysterectomy) in the past but, my recent biopsies have been received this week showing severe dysplasia.  I am meeting with my gynecologist tomorrow to discuss further treatment.  Has anyone had this experience?  Do you any suggestions.BKK-NC http://www.cancercompass.com/message-board/message/all,33351,0.htm bkk1128 Thu, 19 Feb 2009 00:00:00 GMT About six years ago, I had a abnormal pap. I had to have a colposcopy and then a LEEP procedure... I hated it. ya know? but i knew i had to do it... Now six years later, I had a another abnormal pap and just had my colposcopy again. My colposcopy hurt alot worse than last time, the doctor said it was harder because i had a LEEP procedure done. Now I'm worried about him doing my LEEP in a couple of days. Has anyone had to have to have a LEEP done twice? http://www.cancercompass.com/message-board/message/all,33137,0.htm sweetkniomi Thu, 12 Feb 2009 00:00:00 GMT I was diagnosed with stage 0, vaginal cancer in 11/08. I since have been undergoing monthly treatments with the 5FU chemotherapy cream, and have really started to get in an emotional slump. I am normally a very upbeat person, and am typically trying to help everyone else feel better. For this reason I am really struggling with my downturn in my attitude. For me, I have found it very difficult time and time again to be told, "you know how lucky you are, they caught it so early", I do know this, but can I still have my time to be sad and angry for having to go through this? I have a very dear friend just diagnosed with terminal hepatobiliary cancer. I know I am going to be o.k. and he's not. I know I am "lucky" in that respect, but I am hurting. I yet again have burns and blisters and am just sad, my recent pap/biopsy is yet abnormal. Can anyone relate? I am just wondering - am I being selfish for just wanting a little time to be blue and feel sorry for myself, despit recognizing the blessing in early detection? tell me, share with me. I have made an appointment with a therapist, but yes you gueesed it they can't get me in till April!! I really feel like i am barely staying afloat!!!!!!!!!!!!!    -cupfull of hope http://www.cancercompass.com/message-board/message/all,32993,0.htm cupfull_of_hope Sun, 08 Feb 2009 00:00:00 GMT Hi all i am new here. 6 weeks ago i had my first pap in about 26 years, i had a hysterectomy when  i was 26 (cervix and uterous) due to hemmorageing. Well 6 weeks ago the doctor thought i should have a pap and i wasn't worrried never had a bad one. Well it came back abnormal and he sent me than to a OBGYN , He reassured me things were probably fine but wanted another pap to test for HPV< Well it came back no HPV but the pap smear was worse than the first. Now i am scheduled for the coloscopy i think that is how you spell it. I am so nervous, Can anyone give me a heads up on any of this. My test is on Feb 12th. How long will it be before i know what is going on. I am here for 2 more months as i actually live in central ny and miss my own doctors. Thank you for having this site . I wish you all luck and will pray for all of you . sharon http://www.cancercompass.com/message-board/message/all,32900,0.htm toby123 Fri, 06 Feb 2009 00:00:00 GMT I was dx in November('08) with VAIN or stage 0 vaginal cancer. I am currently doing the 5FU or Effudex cream course of treatment. I do 7 days on, 3 weeks off and then go in to my oncologist for a pap and colposcopy. I will need to get 3 paps in a row clear. i've been told this could take anywhere from 6 to 18 months. It's not a very pleasant cream. I have ended up with 3rd degrees burns and blisters, but am hopefully avoiding future burns by applying a layer of Desitin (diaper rash ointment) to the outside in case any cream should spill over. Now, my question if anyone should have info is as follows. I have been told I am not a laser surgical candidate because I have multifocal (4 to be exact) abnormal areas. I am wondering, however, has anyone had a vaginectomy. I am only 34, so i know this is a last resort, however, I am one who likes to be prepared. the more info, the better, I figure. So, if anyone has had this, what does this consist of and did you follow it with reconstruction. The whole thought of that type of surgery makes me quesy, embarrased, and scared, but I really need to know. Anxious to hear - cupfull of hope http://www.cancercompass.com/message-board/message/all,32468,0.htm cupfull_of_hope Sat, 24 Jan 2009 00:00:00 GMT I had a hysterectomy last fall, leaving my ovaries. All pathology was clear, no cancer found, yeah. But to my surprise this year, my 1 year followup pap found Stage 0 vaginal cancer, also called VAIN. I am wondering if anyone has heard if there is a link between this and a higher risk for breast and/or ovarian cancer. I am wondering if I should have my ovaries removed. I know the procedure would be simple, done laproscopically, but not so sure about the whole hormone thing. What do you out there know?  cupfuul of hope http://www.cancercompass.com/message-board/message/all,32469,0.htm cupfull_of_hope Sat, 24 Jan 2009 00:00:00 GMT I am scared to death at this time.  I just got news from ny Gyno that I have Pre Cancer dysplasia.  26 years ago I had never seen a Dr , only nurse practisioners for over 3 years with a pap test coming back a number 3 because of the insurance company (KAISER) I had you only got to see a Dr if you were pregnant.  I was alson never told that it was a 3 or what that meant, just that it was abnormal. I finally saw a Dr by accident in Nov 1984 after having cryo surgery (freezing of the uterus) and he said they did more damage.  I told him that I was changing insurance companies the first of the year in 1985.  He told me he would be with that company and to make an appointment in January.  Well I did and by the 24th of January 1985 I had a cone biopsy and it confirmed that I had cancer of the cervix and it was contained so he did a partial vaginal hysterectomy leaving my ovaries.  I knew then that it was not an accident seeing him but a blessing and i consider him my angel.  I went to all my appointments every 3 months for tests for 2 years then every 6 months for a while and all was ok then once a year.  I had not seen him in 20 years or so and made an appointment with him when I discovered he was on my insurance for compound hormone therapy and a pap 2 weeks ago.  I had to wait 2 weeks for the results and they were devistating to me about the vaginal pre cancer dysplasia.  Well I am thinking the worst and just found out yesterday on Friday the results and have an appointment for a biopsy on Tuesday.  I am so nervous and depressed and would welcome any positive information.  I have been cancer free for 23 years and now this.  I did not know to a few years ago that my EX had transmitted the HPV to me where he had been unfaithful and ran around all the time on me and I didn't know till after we divorced and I went through the cancer ordeal.  Help I feel so hopeless and unwanted being single I am afraid to discuss this with anyone. I do not want to be rejected on top of this.  Help I feel like I am drowning.  All I can think about is them taking my Vagina next and I would not feel human and never be able to be in a relatonship.Marion http://www.cancercompass.com/message-board/message/all,27486,0.htm Rapunzele Sun, 24 Aug 2008 00:00:00 GMT I do not know what to do - I had the biopsy, colcoscopy , etc. The tests were good - after I had the vaginal ablasion. But now - as I moved to a new state - I have no health insurance and my pap smear is overdue.  I am so stressed out - I know I have to have the tests again - but I can not afford it!!!! It kills me - thinking I might have the pre-cancerous thing again. My Mom and my Granma - both died from cancers - am I the next??The thinking about me is killing me - I am so scared!! http://www.cancercompass.com/message-board/message/all,26510,0.htm evakasia Sun, 27 Jul 2008 00:00:00 GMT Are there cases where Lichen Sclerosis has turned into cancer?ShirleyMc http://www.cancercompass.com/message-board/message/all,25425,0.htm Shirley_Mc Thu, 26 Jun 2008 00:00:00 GMT Hi everybody,I'm new to the site and decided to sign on because your stories sound familiar.  I was diagnosed with estrogen receptor positive breast cancer in April 2004.  I decided on a mastectomy and chemotherapy for treatment.  I also take Arimidex which is prescribed for 5 years post treatment to prevent the reoccurrence of breast cancer.   Since my breast cancer was estrogen receptor positive, and my mom's sister died from ovarian cancer, the decision was made to have a complete hysterectomy.  This was done in July 2005.  The pathology from the hysterectomy showed no signs of cancer.  All my pap smears, both pre and post hysterectomy have been normal.  In July 2007, I got my first Low Grade SIL pap smear.  A colposcopy was done, nothing was found, no biopsy performed.  I had my 6 month follow up pap smear on 03/21/2008 and it came back as High Grade SIL and HPV positive.  A colposcopy was done on 04/22/08.  The Dr. found a couple of small lesions which were biopsied.  I am now waiting to hear the results.  I am about to go out of my mind!  I should be celebrating my 4th year cancer free.  But now I'm thinking I have to start all over again with treatment.  How does this happen so suddenly, is there something in the water!  http://www.cancercompass.com/message-board/message/all,23364,0.htm barbp Thu, 24 Apr 2008 00:00:00 GMT I was recently referred to an gyn/onc for dysplasia of the vagina and vulva.  I also have been diagnosed with lichen sclerosis.  The oncologist prescribed Effudex to be used twice a week.  After 3 treatments, the pain was horrible.  The burning everytime I urinated made me shake.  I waited for 10 days until my next appointment before doing another treatment.  I was told I had lots of redness still from the treatments, to wait another 2 weeks before continuing treatments, and prescribed lidocaine to help with the pain and itching.  I would be interested in hearing from anyone else who has undergone this type of treatment.  I just never dreamed it would be so painful. http://www.cancercompass.com/message-board/message/all,22971,0.htm trulyblue Fri, 11 Apr 2008 00:00:00 GMT I was DX'd with CinIII last May, had Hysterectomy in Aug...everything was going fine even had a clear pap 1 month after hyster....but now 7 months in..I have been having pain during "hubby and me" time for the last month. Also I have been having a pinching feeling deep inside...and I remember having this same pinching feeling before hysterectomy. Also my bladder will fill like it is full all of a sudden and then stop and go back to normal...not sure if this has anything to do with anything...but I know your body does things to tell you something is wrong. I am HPV positive with the cancer causing strain 16, 18, .I had everything removed except ovaries....so it was a complete Hyterectomy. But because of the pain during my intimate moments..I am concerned. I had the same pain before the hysterectomy and I also have a very tender spot on my muscle the is connected to my left hip. I have made an appointment with my GYNO but it isn't for a month (April..when he told me to come in for my follow up) He told me that they found CINIII high up in the cervical canal after the cervix was biopsied after hysterectomy..but said all was fine. But then again..he also couldn't remember who I was the meeting before the hysterectomy and had to look up my chart infront of me. Kind of thought he should of been on the ball about my issues before he walked into the room..LOL! He even saw a cyst on my ovaries from the MRI and didn't tell me about it. Kept asking if we where going to keep the left ovary...I couldn't figure out why until I saw my pics from the surgery. I asked for pics because I wanted to see my insides for myself.  Also he found a SPOT just by my bladder that he lazered off..about the size of an eraser top for a pencil...I asked him what the spot was and he said he didn't know...weird...and yes I am babbleing on..but I just don't talk to my family about this stuff..my Mom has a hard time with anything that involves me..and my hubby is not always listening...he has vidoe game deafness..can't hear a word I say when he is playing..LOLAnyone out there with Vaginal Cancer who can really think about your symptoms if any..please let me know. I know I have a great chance of having CINI, II, III again...but is seems like it is a never ending process. http://www.cancercompass.com/message-board/message/all,21892,0.htm Dragonfly2112 Tue, 11 Mar 2008 00:00:00 GMT i am 23 years old and i have a problem about my vagina i feel itching and there is yellow come out from my vagina almost 1 year i feel this kind of infection i am using BETADINE WASH i buy from medical store and almost 1 year i am using but only 2 or 3 days desapear then it will come again so please i want to know what kind of infection it is. and please give me advice what i have to do to desapear it is? http://www.cancercompass.com/message-board/message/all,21769,0.htm sweety Fri, 07 Mar 2008 00:00:00 GMT Hello all, My name is Debra. I'm new to this site.On the loss of femininity, I guess I should start with losing my only child in '86. She only lived 7 wks. I never tried again, feeling I could not handle that kind of loss again.I had a successful career in medicene, I poured myself into my work after losing my mom, dad, and sister.  I started having chronic fatigue and pain. I was diagnosed with fibromyalgia.Then I started having facial tics and tremors on the left side of my body. That was diagnosed as 2 meningiomas on my spine at the base of my brain. They shaved my long hair and removed the tumors.Next I started having to have my breast cysts, and having them drained at least once a month. Docs told me they could no longer read my mammograms due to density of my breasts. Two surgeons suggested bilateral mastectomy with reconstuction. I did it....Backing up a bit, I became disabled after meningioma surgery, so much for pouring myself back into my work.The heavy duty pain meds I was on caused "dry mouth", then I had to have my top teeth pulled...ugh, now I have dentures on top.I met a wonderful man that said,"Don't worry about your scars, they are only roadmaps of you life. They tell where you've been, not where you are going." WOW!So off to the gynocologist for birth control. Then I learned I need 2 biopsies, did that. HPV positive and it required a wide excision of my vulva.That was Jan. '07. My gyno told me this has to be checked every 6 mos. for the rest of my life.I went for my follow up visit and I was sent to a gyno oncologist. VIN2 can be multi focal. Now it's in my vagina and my cervix is enlarged. My rectum and lower back has been causing me pain. My new gyno oncologist said this can all be related.Now I will have a colonoscopy in 2 days, one week after that, a wide excision of my vaginal wall with a possible hysterectomy one week from then.My fiance still wants to marry me, but how can I put him through all this? I think he might be a saint....It may not read this way, but "carpe diem" is my new mantra. I do want to live till i die.I really feel positive about the results of all of this, it's just that I am so tired of being cut on. So when does a person cry "uncle" and say "enough is enough?"I'm not giving up yet!Thank you for reading this lengthy post.I'm just a bit weary and a bit scared,Debra http://www.cancercompass.com/message-board/message/all,21637,0.htm debra2 Tue, 04 Mar 2008 00:00:00 GMT I think if we pray and use this site we can make it through anything.I had 25 radiation treatments and four internal. It was no walk in the park. I was not alone.I had the best staff anyone could have. They walked me through it.Now in a Month I will know how we did. I pray for each one of you.  http://www.cancercompass.com/message-board/message/all,18872,0.htm MazeMazie Sat, 15 Dec 2007 00:00:00 GMT It seems like I might finally have an answer to the problems  I have been experiencing since my radiation therapy.  I went to my family doctor yesterday and she has referred me to a gastroenterologist for possible radiation proctitis.  Has anyone had this?  Do you know what the testing and treaments are like?  Are they usually successful in curing the problem?   I feel so frustrated b/c it just seems like one thing after another and I can't just get better.  My cancer is in remission though, so that is great news.  I worry that this rectal bleeding is colon cancer (metastatic) rather than proctitis...HELP! http://www.cancercompass.com/message-board/message/all,18559,0.htm Adoyle Sun, 02 Dec 2007 00:00:00 GMT  was treated with chemotherapy (taxol and carboplatin 1 infusion per week x 4 mos) and radiation & chemotherapy (cisplatin + 35 external and 5 internal) for vaginal cancer that was originally thought to be unknown primary.  Dx. was September of 2006 and after many, many checks, no cancer has ever been found elsewhere.  I had a 4cm tumor in my middle right vaginal wall - it also looked like one lymph node in the inguinal chain was involved.  No one would stage the cancer, however, when I pushed my oncologist, she said "well, I suppose we would have to call it stage III b/c of the lymph node involvement". My last treatment was radiation in April. At the end of the treatment plan I was declared cancer-free.  The tumor has completely resolved.  I am in active remission.  I have had checkups every three months (so far a total of 2, one in June and one in September).  The pap smears and biopsies obtained from the tumor site are clear.  I am scheduled for my next follow up in January.  So far, only one CAT scan has been performed, about three weeks after treatment stopped in April although there were many imaging studies taken before treatment began as well as other diagnostic tests, colonoscopy, GI studies, LEEP, etc.BUT, here's the problem.  I have fairly constant pain in my thighs, buttocks, and abdomen (this is the area that was treated with radiation).  This pain is often around a level 5 of 10. It is pain that seems to be muscular or pain in tissue.  I also have fibromyalgia and it is like that type of pain.  Sometimes, for a day or two, it improves but generally it is bothering me most of the time.  I asked the radiation oncologist and he says that "it wasn't him".  I talked with the gyn oncologist and she says that "it wasn't her".  Which I guess rules out the chemo and radiation although I think that is what is causing it - one or the other.  Or perhaps these treatments simply have aggravated and worsened the fibro.   The other problem I am experiencing is hemorroids.  They have been bleeding for over a month now.  Is this normal? Does anyone have any similar experience or is there a doctor or nurse out there who can recommend what to do? Thanks...hoping to hear from someone! http://www.cancercompass.com/message-board/message/all,18276,0.htm Adoyle Fri, 23 Nov 2007 00:00:00 GMT I constantly itch down below. I use the kgel and replens but it still itches how do you relieve that.First I thought it was yeast. The Dr said no that is dryness from the radiation...how bad is the internal radiation http://www.cancercompass.com/message-board/message/all,17998,0.htm MazieKarnes Thu, 15 Nov 2007 00:00:00 GMT I was treated with chemotherapy (taxol and carboplatin 1 infusion per week x 4 mos) and radiation & chemotherapy (cisplatin + 35 external and 5 internal) for vaginal cancer that was originally thought to be unknown primary.  Dx. was September of 2006 and after many, many checks, no cancer has ever been found elsewhere.  I had a 4cm tumor in my middle right vaginal wall - it also looked like one lymph node in the inguinal chain was involved.  No one would stage the cancer, however, when I pushed my oncologist, she said "well, I suppose we would have to call it stage III b/c of the lymph node involvement".My last treatment was radiation in April. At the end of the treatment plan I was declared cancer-free.  The tumor has completely resolved.  I am in active remission.  I have had checkups every three months (so far a total of 2, one in June and one in September).  The pap smears and biopsies obtained from the tumor site are clear.  I am scheduled for my next follow up in January.  So far, only one CAT scan has been performed, about three weeks after treatment stopped in April although there were many imaging studies taken before treatment began as well as other diagnostic tests, colonoscopy, GI studies, LEEP, etc.BUT, here's the problem.  I have fairly constant pain in my thighs, buttocks, and abdomen (this is the area that was treated with radiation).  This pain is often around a level 5 of 10. It is pain that seems to be muscular or pain in tissue.  I also have fibromyalgia and it is like that type of pain.  Sometimes, for a day or two, it improves but generally it is bothering me most of the time.  I asked the radiation oncologist and he says that "it wasn't him".  I talked with the gyn oncologist and she says that "it wasn't her".  Which I guess rules out the chemo and radiation although I think that is what is causing it - one or the other.  Or perhaps these treatments simply have aggravated and worsened the fibro.   Does anyone have any similar experience or is there a doctor or nurse out there who can recommend what to do? Thanks...hoping to hear from someone!  http://www.cancercompass.com/message-board/message/all,17566,0.htm Adoyle Wed, 31 Oct 2007 00:00:00 GMT HI... I am a 38 yr old female who had a hysterectomy 7 yrs ago. I had my uterus removed and  my cervix at that time due to a benign rare "stromal" nodule in the uterine wall...anyway all along I go to the Dr and always have had a  normal pap...Well this Feb I got my 1st abnormal one which lead my 40 yr old Dr who thence retired  ( this is Dr number 2 who retired)  to do a colposcopy and she only saw one lesion and then she  of course biopsy;d and  that came back negative for HPV but had squamous changes.... she did not mention pre cencerous..So I go to a new gyno well recommened  who just did the 2 nd   pap..that came back abnormal and today I had a  colp again...and that one she took 3 biospy's from..she told me that it indeed was pre cacnerous cells...what the heck is the difference between precancerous and cancerous other than it can and could become cancerous... I have no cervix... I am very nervous... I think my spouse had a infidelity back about 10 yrs ago..I have not been with anyone in  like 18  yrs....  I am angry nervosu and scared. I have been sobbing half the night..I don't understand how a neg HPV can come back as positive??? I thought if it was neg it was neg? But she  told me I would have results in 7 to 10 days... I am very nervous and have a thousand  questions..if she finds  I guess the HPV and cancer than  she would refer me to a specialist..I thought it was a good thing that I don't have my cervix...but ervythign I read tongiht made me even more nervous..anyone ever been in this boat! If so email me at omystarieid@yahoo.com http://www.cancercompass.com/message-board/message/all,13623,0.htm Sundown Tue, 19 Jun 2007 00:00:00 GMT