Cancer of the vulva (also known as vulvar cancer) most often affects the inner edges of the labia majora or the labia minora. Less often, cancer occurs on the clitoris or in Barth...
|
Vulvar cancer
|
Watch this |
| View More Posts Ignore |
I want to get other people's experiences with vulvar cancer. I know this is a very small group, but I have some questions and I bet some of you do too!
My biggest one is....does this stuff ever quit coming back? Do all of you who have VIN III/CIS smoke? Who has had laser surgery and how was your experience? Who has had excision? I just had excision of two areas two days ago (and a biopsy while she was down there). Has anyone else had it and how was your experience. Did you suffer any psychological side effects?? My fear about all of this is that it will keep coming back. I had laser surgery just over a year ago and within 6 months a place was back. I have used Aldarra and 5-FU, both of which left me in constant pain and burning. Now I have had the excision. What is next? A vulvectomy. Just the thought of that word makes me cringe? Has anyone had that done? How did it turn out?? Let's get some discussion threads going? Posted on 07/19/07, 07:07 am |
| 34 Replies | Most Recent | Add Your Reply |
| View More Posts Ignore |
Hello, I'm another one in the family of Vulva cancer. When it was first diagnosed it was already stage four and I didn't have a great prognosis. But several sets of laser surgery combined with radiation has at least held it in check. So far, since 2004 I have not had any further sign, but did lose a good deal of that particular area!
As hard as it is, I must say that trying to keep a positive attitude is probably your strongest medicine. Never give up, and if it comes to radiation - the risks are worth it. I think without that I would not have had much chance in excising the worst of this disease. Everyday I pray to remain free of the return, I know it is remission, but I like to think it is gone, gone, gone! My prayers are with you! Good luck. You have a good chance of getting rid of it. 
|
|
|
|
||
| View More Posts Ignore |
I was diagnosed in July 1996 and had a hemi-vulvectomy in August. As bad as that was it wasn't as bad as the original treatment that the first doc wanted(a full vulvectomy) I have not had any reocurrences and aside from the extreme sensitivy "there" its gone very well. As far as the surgery, oh yeah it was very painful and the nerve regenration that went on for several years afterward was the pits.
|
|
|
|
||
| View More Posts Ignore |
Hi I just joined this group and am very relieved to have found some information from others about their experiences. I'm 35 and don't smoke, however I do live with a smoker and work in a smoker heavy environment. I was diagnosed with VIN 3 after a "mole" I insisted my doctor remove was biopsied. I had excision 3 weeks ago. At my follow up visit I was told that the center of what they removed tested as cancer. I too am terrified of recurrence. My oncologist says I'm healing well, but I'm still sore and not working. I have a follow up with her in 6 months and I'm desperately hoping that goes well.
|
|
|
|
||
| View More Posts Ignore |
I will be scheduled for Laser surgery upcoming after ineffective wide local excision bilaterally (5/08). Can anyone tell me what to expect - pain, time off work, healing, etc. Any info would be helpful. I've been doing lots of searches via internet since diagnosed 4/08.
Thank you! "
|
|
|
|
||
| View More Posts Ignore |
Hi everyone. I am new to this site. I have VIN III and had laser surgery on Tuesday. I am not able to do much unless I take my pain medication, which of course causes bowel problems, which makes the pain unbearable. My co-workers think I should return this Monday. I think otherwise. Any thoughts?
|
|
|
|
||
| View More Posts Ignore |
Hi Abnerb64, I see you recently had surgery. Can you describe your experiences? I had laser + 3 other procedures Tues., 7/29, after the initial wide local excision bilaterally was ineffective. How was your recovery? Time off work, etc. I've found it very hard to find much info anywhere. When I came across this site, I was elated, only to be disappointed since I did not get any replies. Please help me through this difficult time. Thank you!
|
|
|
|
||
| View More Posts Ignore |
I'm only in my 4th radiation treatment, but my dr. told me that they have medicine for infection. I'm doing electron treatment so it doesn't go so deep, but he told me to take a wash cloth with tea and set it on the vulva and then put aquator on it. He told me for the burning that they have medicine to numb the urethra. I also know of someone who had to have a catheter put in because it hurt too much. I'm guessing that might be me in a week or so. I have 21 treatments left. The main thing is to call your nurse or doctor and let them know what type of pain you are in. When I had c-diff after colon cancer, the doctor gave me a medicine for urinary incontinence. That might help you for the urge to urinate and that might prevent pain also.
|
|
|
|
||
| View More Posts Ignore |
I would like to tell you about this site:
http://www.eyesontheprize.org/stor...#vulv It tells about people who have had vulvar cancer. My doctor didn't want to give me a vulvectomy because I was young and after reading the stories above, I can understand why. Also, I will add my story to my profile so that you can read all about my experience so far. Thanks.
|
|
|
|
||
| View More Posts Ignore |
I haven't checked the site in a couple of weeks and was so pleased to see your response. I'm going to get busy and do some reading of posts. I think it is helpful to tell others your experiences. My most recent surgery was 7/29/08. It has been quite a difficult time and it is hard to discuss w/ coworkers, etc.
My prayers are w/ all of you!
|
|
|
|
||
| View More Posts Ignore |
An update: I've had 21 treatments of electron therapy. I was going to have 25 total. They've decided to do 35. I have 4 more for the whole vulva. Then they will do 10 on the area near the vaginal opening where my cancer was located. I can hardly stand the pain. I have raw, blistery skin.
I worked up until today. My work gave me a laptop with software. Believe me, the last week I could not have worked at work. I was in too much pain. Today I took my vacation hours but will start disability leave for at least a few weeks. The best thing I can do is keep very still and not move much. I've found that soaking in a bath tub helps sometimes, but any type of topical treatment makes me feel like I'm going into cardiac arrest. I asked my doctor if I was a wimp and he told me that I was actually doing better than most people. I am a runner and I actually ran 3 miles last Tuesday night. Then the pain hit and it was unbearable.
|
|
|
|
||
| First | Previous | Page: 1 2 3 4 | Next | Most Recent | Add Your Reply |
Hi, I'm Emma and I'm 20 years old. Within the past year I have had two seperate surgeries to complete biopsies for …
It's great to find a vulvar cancer support community on Daily Strength - there seems to be very little support for …
I am 43 years old and have been recently dx'd w/ extramammary Paget's disease - help! This is listed under vulvar …
