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 Sat, 18 May 2013 00:00:00 GMT Sat, 18 May 2013 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ I have been diagnosed with vaginal cancer.  Well, I guess that's the final dx, although intially it was cancer of unknown primary.  It was felt that the vaginal lesion had metasticized from another area.  In spite of continued testing and searching, no primary site has been found.  I have only the vaginal lesion and possibly one lymph node in the iliac chain involved. I was first diagnosed last September.  I have had 6 months of chemo (taxol and carboplatin) and am now having 35 external and five internal radiation treatments with chemo (cisplatin).  I have had a really hard tmie getting any info b/c everyone seems to think that this type of cancer is rare.  I have adenocarcinoma but it is not related to DES exposure.  I am writing to see if there is anyone else out there who may have had a similar experience.  I also am not able to get a stage or prognosis.  The doctors just keep telling me it is unusual and they don't know what to expect,,,during chemo my tumor (initally 4cm) completely resolved.  I am in the middle of the radiatin cycle and finding it hard to stay positive about the outcome.  Does anyone have any info they can share regarding their experience with vaginal cancer? http://www.cancercompass.com/message-board/message/all,10354,0.htm Adoyle Wed, 14 Mar 2007 00:00:00 GMT I was diagnosed in July with severe dysplasia and had valvectomy and laser vaporization on the 11th of Sept. Follow up appt was good and healing according to the Dr , however, I have extreme burning and very uncomfortable to sit or walk. If anyone has had the same symptoms after surgery I would love your input and how you handled the situation. Thank you!!! http://www.cancercompass.com/message-board/message/all,68523,0.htm Diamondlil52 Wed, 03 Oct 2012 00:00:00 GMT This past week I went to the dr thinking I would need to have a bladder sling and I had been told in the past that I also have a rectocyle.  I have frequent urination and feeling of urgency, leaking when sneeze or cough, abdominal bloating & feeling full quickly (which was recently told it was IBS and a small hiatal hernia), I am currently getting iron shots bi-weekly due to anemia (my ferritin was down to 5), and taking 100,000 units of Vitamin D weekly due to low Vit D.  When I went to the Dr on Wednesday I was referred for a transvaginal ultrasound and also a Urodynamic test on the May 24th.  At that point, decisions were to be made about surgery options.  On Friday, I received results from my ultrasound and was told that I have a tumor (hopefully fibroid).  I am scheduled for a biopsy on Tuesday.  I am completely freaking out.  I will be 42 on May 25th.  I have 2 children (19 & 15).  Everything I keep reading has me completely terrified what the biopsy is going to find.  I don't know what to expect.  I was already nervous about the aspect of a hysterecotomy, bladder sling and rectocyle repair.  Now I'm looking at possible cancer?  Everytime I do a search for vaginal tumor, cancer sights come up.  Anyone have similar situations or advice? http://www.cancercompass.com/message-board/message/all,66158,0.htm LLee11 Sun, 13 May 2012 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 Hi, I am 23 years old, have two children, a 4 year old and a 4 month old. I recently found a lump inside my vagina, it is has hard and round, about the size of a small pea. I have pain during intercourse and intense cramping for hours after intercourse. I was having more pain than usual and ened up finding more lumps. There are five that I can find, all very hard, on the left side of my vaginal canal, up more near my cervix. They are all around pea sized but some are a bit smaller. I am terrified. I have a doctor appointment in a few weeks, but I was hoping someone here might be able to give me an idea of what this could be. Thank you.. http://www.cancercompass.com/message-board/message/all,64731,0.htm Ncovage3 Sat, 25 Feb 2012 00:00:00 GMT I'm 2 years in remission after being diagnosed, and treated for Vaginal Cancer.  I was wondering if anyone has experienced Radiation Proctitis as a side effect?  I have had 2 occasions with blood in my stool.  I'm tested on a regular basis, and just recently had a colonoscopy with no cancer or polyps.  However, they did see radiation proctitis and have given me a script in case it occured again.  It occured again tonight and I'm just wondering how common this is?  My next check up is first week of Dec.  I have no pain or discomfort, just the blood in the stool. Thanks for any advice. Wanda   http://www.cancercompass.com/message-board/message/all,62906,0.htm shoppinggirl14 Mon, 14 Nov 2011 00:00:00 GMT I have a relatively large dark bump within my vagina (on the labia minora) that itches, hurts, and as of today bleeds. I just went to the doctor a few days ago for thyroid issues and I don't want to go again soon unless I need to, so I've tried googling what the bump could be and all that really seems to match is vaginal cancer. I'm only 15 and I'm terrified that I may have cancer. I'm still a virgin so it's also doubtful that it could be something sexually transmitted. If this sounds cancerous, please let me know. I made this account today just so I could try to rule out what I fear most. http://www.cancercompass.com/message-board/message/all,62692,0.htm IamAnonymous Sun, 30 Oct 2011 00:00:00 GMT My periods have changed dramatically in the last year, from regular to now 2-3 months apart, also I have alot of vaginal bleeding right after a bowel movement. I had a pap 3 months ago and it was fine. My mom and grandma had uterine cancer and a hysterectomy at age 35, I am 32? I cant afford the dr right now, so I am just waiting it out hoping I can find some answers! http://www.cancercompass.com/message-board/message/all,62092,0.htm keagan7900 Sun, 25 Sep 2011 00:00:00 GMT I found a lump about the sise of a head of a pin on my vagina. It hurts to touch. Should I be worried or is it just nothing? http://www.cancercompass.com/message-board/message/all,61248,0.htm dpt947 Mon, 08 Aug 2011 00:00:00 GMT It is so hard to get questions and drs. just want you to believe it will be ok after they do the laser.  I guess I am wondering if you are told severe dyplasia and you are one step of having evasive cancer.  If the laser did not work how fast will this dyplasia travel to become cancer.  this is so hard.  I am 51 was smoking until the day i found out about this. What else can i do? http://www.cancercompass.com/message-board/message/all,60006,0.htm texasangelgirl Mon, 13 Jun 2011 00:00:00 GMT I found a large lump the size of a dime on my vagina, I don't know what it is and I am in my twenties. should I be worried, could it be cancer? iv had it a few months now. please give me your advice! http://www.cancercompass.com/message-board/message/all,60727,0.htm ads111 Fri, 15 Jul 2011 00:00:00 GMT  I am 32-years old and live in Las Vegas, Nevada, USA. I don't smoke and I excercise. I did my first sprint-distance triathlon at age 30 and love to train for the sport. One year ago (Nov. 2005) I had my first abnormal pap. The indications were moderate to severe dysplasia. My Doctor immediately brought me in for a culposcopy and the results were that it was a "false positive." I'm sure you know this is very odd for a pap to find abnormal cells and for the follow-up culposcopy to find nothing. I wasn't even positive for HPV.I went in for my follow-up pap in April 2006, thinking very much that I was just going through a routine - this time the pap was LSIL with some severe dysplasia. My doctor performed another culposcopy that confirmed the pap and that I was positive for HPV. I had a LEEP procedure within 2 weeks that found CIS - but the margins were "clean." My doctor was confident the situation was handled - after all 90% of patients are treated with this procedure.I went in for my first post-LEEP pap in August 2006. Results came back LSIL with mild dysplasia. My doctor was extremely alarmed that I had an abnormal pap so soon after my May LEEP. I was very disappointed and alarmed as well. My trust in the "normal" procedures was lacking. The normal protocol would be to perform a culposcopy and if it was just LSIL with mild dysplasia, then they would wait 3 months and test me again. Since the culposcopy I had in Dec 2005 had given me a false negative, I was not willing to take that chance again. My anxiety had reached a whole new level even though I was going to counseling. I requested and my doctor agreed to perform a total hysterectomy (complete removal of uterus and cervix) in October 2006. My hospital stay was only 36 hrs and since it was performed vaginally, my recovery was very smooth. I kept my ovaries, so there was no hormone adjustments.  I did not have any infections and no post-surgery complications. The results of my pathology confirmed the pap: LSIL with mild dysplasia - clean margins. I had a surgery that is usually reserved for stage 1 cancer when I only had mild dysplasia. I felt confident that this was behind me.My extremely cautious doctor requested I have one more pap in Jan 2007 before returning me to yearly exams. I was pretty upset with her - the waiting 2 weeks for another pap test so soon was very difficult for me - my anxiety about my health really takes over my ability to enjoy life while waiting for the test results. However, it's a good thing it was up to my doctor to have another test ... I may have blown it off just to avoid the anxiety alone.I found out last week (Jan 18th, 2007) that the pap on the vaginal vault was LSIL-H (low grade squameous intraepithelial lesions - can not rule out high grade) - same as the result on my cervix last May. My doctor (gynecologist) has now referred me to a gynealogical oncologist. Not because I have cancer, but because she feels the oncologist might be able to do more for me so I don't develop cancer.I am extremely frustrated because it seems that I'm way outside the statistics. It is very difficult to feel confident when you can't really believe the test results all the time. I'm scared and don't know how to let my new doctor do his job and feel confident about my future.I feel very lucky to have had this pap test so soon after my hysterectomy and that I have several options for treatment of my vaginal dysplasia - but realizing that cancer could be in my future is frightening and I'm terrified. I have a great group of friends and family, but no one really knows how to relate to this sort of thing if they haven't gone through it.I would appreciate any support or information any of you have that might help.-Stacey http://www.cancercompass.com/message-board/message/all,9001,0.htm Stacey32 Mon, 22 Jan 2007 00:00:00 GMT About 6 months the gynecologist found a lesion.  When I went back, that lesion was gone but another one had appeared.  The gynecologist took a biopsy (it seemed he went deep because it hurt and bled for 2 days!)  I haven't gotten the results back but I am worried. I have ovarian cancer, granulosa cell tumor (rare) so I am worried that maybe it has spread, even though it usually doesn't spread to the vagina.  Has anyone had this experience?  Thanks!  Dee http://www.cancercompass.com/message-board/message/all,56312,0.htm Dee55 Tue, 01 Mar 2011 00:00:00 GMT I am 58, married, and post-hysterectomy. A few weeks ago I noticed a hard lump near the surface of my vaginal area. I made an appt. with my family Dr. for 3 weeks out due to my travel schedule. Since that time the single lump has multiplied out of control. There are now countless lumps and some lumps that have numerous heads (if that makes sense.) All of the lumps are attached, some have a full yet flat like appearance and some are quite full appearing. If you try to squeeze one of them you get a bit of blood and nothing more. Now I have so many lumps that my vaginal opening is pressed open by how many there are and how full they seem to be. Any idea what the heck these may be???? I am married and we are very faithful so I am not worried about any stds. Needless to say I am very, very worried. I feel like pulling the cover over my head and ignoring this to see if it will go away. I know that is not possible but I need help trying to understand what this may be. I go to my Dr appt late next week. Please, can you offer me possible ideas. I appreciate your help more than you know. I am trying to remain calm. I just get so upset when I keep seeing more and more of these lumps each day. Thank you.   http://www.cancercompass.com/message-board/message/all,53787,0.htm beachday Fri, 10 Dec 2010 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'm 26, and a mother to an 18 month old girl. I was diagnosed with HPV about 3 years ago, the colposcopy showed nothing was wrong. By the time I got pregnant my OB ran a ton of tests and no HPV was present, he said it clears up on its own all the time. When I went in for my check up after the birth, everything was fine, and since I no longer have insurance I haven't been back since. Several weeks ago I noticed something felt odd inside my vagina. So I took a mirror to check it out and saw some growths at the entry of my vagina. They were not there before and I don't know how long they have been. They certainly weren't there a little over a year ago when I had my last pap. Now within the last week or so I'm noticing my labia looking irritated, like maybe whatever it is is spreading. I don't have any pain. They are odd shaped growths, not polyps. So I made an appointment for a pelvic exam next week and am absolutely terrified. I'm trying not to jump to conclusions, but this is NOT normal. What lead everyone to find out if they had cancer? Can it grow that fast, that last year I was fine and now I've got these growths? How was this not picked up before? Does anyone have any advice? http://www.cancercompass.com/message-board/message/all,50645,0.htm firegirl Sat, 28 Aug 2010 00:00:00 GMT I have posted several messages during the past two years on this board. If you read the messages in the vulvar cancer under "hope is here" that is me,if you have cervical or vaginal cancer or precancer,you need to read my messages. As you can see from my previous posts,my daughter was diagnosed with VIN III at the age of 19. She had to have a partial vulvectomy in February of 2008. In April of 09',the hpv came back in the form of VIN I and VIN II. This time the doctor wanted to do the laser ,four sessions due to the very extensive infection. I decided to spare my daughter from such pain by trying an alternative,and as you can see from the previous messages,it worked. The oncologist was speechless when she did a biopsy in May. Not only all the spots on her vulva were gone,the biopsy came back clear. The doc was so shocked in surprise that she wanted the name of the product,I gave the the empty bottle and literature I printed out from the Bioresponse site. During this seven  months from the treatment, my daughter had a complete regression of the VIN.Two wekks ago she went for an other visit and a biopsy found codiloma,which is not a malignant condition but it is the stage before it turns into VIN I. Therefor we will go back from mantainance on the Dim,to a higher dose. I just wanted everyone to know,either you have cervical,vaginal or vulvar precancer or cancer, that the Bioresponse works to get read of the bad cells. It is being used in studies at the National Cancer Institute. We feel blessed to have found it,please write to me with any questions you may have. I will be glad to help. Happy mom http://www.cancercompass.com/message-board/message/all,42418,0.htm sofiaroma Sun, 20 Dec 2009 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 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 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 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 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 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