CancerCompass message board discussion started by Elliebear on 3/3/2008 http://www.cancercompass.com/message-board/message/all,21571,0.htm Wed, 08 Oct 2008 00:00:00 GMT Wed, 08 Oct 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ Hi, i was just wondering if there is anybody out there who can give me some more information about vulval cancer.  My mum has just being diagnosed and has to have a radical vulvectomy.  At this moment in time we do not know what stage the disease is at, as she is waiting to have an MRI scan.  She is really frightened as is the whole family and she is extremely distressed about the amount of pain she'll be in. Is there anybody that can commnt as we are really scared!! Elliebear Mon, 03 Mar 2008 00:00:00 GMT  On 3/3/2008 Elliebear wrote:Hi, i was just wondering if there is anybody out there who can give me some more information about vulval cancer.  My mum has just being diagnosed and has to have a radical vulvectomy.  At this moment in time we do not know what stage the disease is at, as she is waiting to have an MRI scan.  She is really frightened as is the whole family and she is extremely distressed about the amount of pain she'll be in. Is there anybody that can commnt as we are really scared!!I am 47 yrs old and am one year post treatment for vulvar cancer.  Rather than have a radical vulvectomy, (which years past has always been the only option) My doctors treated me with Cisplatin (chemo drug) as well as pelvic radiation.  I was lucky in that it completely eradicated my tumor.  I had a tumor in between my vagina and my anus.  Originally, they were just trying to shrink the area as it was so close to my anus and then they were just going to do a local excision.  but at the end of my treatment there was nothing left.  I remember how scared I was when I was first diagnosed but the more information you get the better.  I immediately went to Dana Farber in Boston to get a second opinion, and Iwould recommend that your mother also go to a top cancer center for a second opinion.  Vulvar cancer is a very slow growing cancer so don't let anyone rush you into a decision as there may be other options to a radical vulvectomy.  Please write me at --Message edited by CancerCompass staff. For personal protection, email address removed. Consider private reply. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html--  if I can help with more information.Patty positive Mon, 03 Mar 2008 00:00:00 GMT Thank you so much for the reply.  It's all so scarey at the moment, and i'm glad you are doing ok.  She is due to see her specialist on Thursday, so i will make sure i ask plenty of questions. Elliebear Mon, 03 Mar 2008 00:00:00 GMT Hi,I was diagnosed in my early 20's with cancer of the cervix which resulted in me having a hysterectomy. 26 years down the line in 2005 I have been diagnosed with cancer of the vulva. I have had it lasered out, it came back then I had a partial vulvectomy and it still came back. Then for a year I was fine and in September 2007 the spots came back so I had to have them cut out. I know that this is a slow growing cancer. I must have had about 7 operations for this now and see the oncologist again end of March 2008. Do these two cancers relate to each other? If so then I am not really worried as I feel that it took 26 years to re surface that it would take another 26 years before it really comes to a head. The surgeries were not sore but just inconvenient. I have been told that they cannot pick this cancer up from blood tests, but at the moment I am just so tired and lsoing weight. Any suggestions?Kind regards nikita Mon, 17 Mar 2008 00:00:00 GMT  On 3/17/2008 nikita wrote:Hi,I was diagnosed in my early 20's with cancer of the cervix which resulted in me having a hysterectomy. 26 years down the line in 2005 I have been diagnosed with cancer of the vulva. I have had it lasered out, it came back then I had a partial vulvectomy and it still came back. Then for a year I was fine and in September 2007 the spots came back so I had to have them cut out. I know that this is a slow growing cancer. I must have had about 7 operations for this now and see the oncologist again end of March 2008. Do these two cancers relate to each other? If so then I am not really worried as I feel that it took 26 years to re surface that it would take another 26 years before it really comes to a head. The surgeries were not sore but just inconvenient. I have been told that they cannot pick this cancer up from blood tests, but at the moment I am just so tired and lsoing weight. Any suggestions?Kind regards Hello, I had a pre-cancerous condition of the cervix in 1987, which was treated with cryo-surgery - unsure of spelling - it is the freezing of cells. It was successful, and I have never had another abnormal pap. Then in 2003 I was diagnosed with vulva cancer - it had been misdiagnosed for over 5 years, so I needed a modified radical vulvectomy, and all of my lower lymph nodes removed. I have had 3 additional lesions removed since 2003. In answer to your question, are they related - I am not sure. I have noticed that the majority of women on message boards, etc. seem to report the cervical first, then followed by another cancer. They say it is HPV, etc., but I do not have HPV, and I am not in any other high risk group.  I am tired as well. I seem to have decreased the incidence of the returning lesions by eating organic, not using any detergents - I use only organic soaps and household cleansers. The original high risk group for vulvar cancers were cleaning women. I wish you all the best.Susan  simplysusan Sun, 15 Jun 2008 00:00:00 GMT