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vulvar cancer

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  • kmygil
    kmygil Member Posts: 876
    Hi Kevann,

    I'm sorry you have this diagnosis. I will tell you what I know from my mother's experience with vulva cancer. She thought she had an ingrown hair, but the knot just stayed there until it ulcerated. At that point she was diagnosed with vulva cancer. She had to go through surgery. It is a tough surgery from our perspective, because they have to take so much to be sure of margins. However, it turned out that my mother's vulva cancer was a metastasis from colon cancer. The scans had not caught it because it was sort of hidden in the hepatic flexure. I urge you to have your colon checked out as well. At any rate, before the colon cancer was found the doctors did not indicate that any radiation or chemo would be required. Unfortunately, the colon cancer broke through my mother's intestinal wall and she was too debilitated to make it at that point. The point being, you can definitely survive vulva cancer, but to make sure that this is not a secondary cancer. Please keep us up to date. We are praying for you and sending positive energy your way.

    Hugs,
    Kirsten
  • groundeffect
    groundeffect Member Posts: 639
    Hi Kevann,

    I hope you will come back and talk with us. I bowl with a woman who recently told me she had vulvar cancer. Although I haven't had an occasion to talk to her more about it yet, I must say she seems to walk, talk, and bowl like the rest of us. Things can look pretty dark at first after a diagnosis, but you've come to the right place to get help.

    groundeffect
  • BOO5
    BOO5 Member Posts: 3
    Vulvar Cancer
    Hello, I am 40 years old and found out I had vulvar cancer in April 09. I had two surgeries and chemo and radiation. My treatments stopped in Sept 09. I had a PET Scan in Jan 2010 and it said I was cancer free, however, three weeks later a growth appeared again. I had it removed in Feb 2010. It was cancer again. I found that having a great attidute helps but I am still frustrated. I just needed to talk to others who has this.

    BOO5
  • funbeadgirl
    funbeadgirl Member Posts: 181
    BOO5 said:

    Vulvar Cancer
    Hello, I am 40 years old and found out I had vulvar cancer in April 09. I had two surgeries and chemo and radiation. My treatments stopped in Sept 09. I had a PET Scan in Jan 2010 and it said I was cancer free, however, three weeks later a growth appeared again. I had it removed in Feb 2010. It was cancer again. I found that having a great attidute helps but I am still frustrated. I just needed to talk to others who has this.

    BOO5

    vulvar cancer...me too
    Hello BOO5,
    I am sorry for your cancer diagnosis, and for the recurrence so quickly, I hope it was caught very early for you. I too was diagnosed with vulvar cancer on Dec. 23, 2008, I had a partial radical vulvectomy on Jan 12, 2009. I would be glad to talk to you about this, I felt very alone, because I was never able to talk to another person with vulvar cancer. I had radiation therapy, but did not have chemo. After I finished and recovered from that, I had PET scan in June 2009 and they found nodule on thyroid, and it turned out to be cancer. Honestly I am having a harder time with everything since then. Positive attitude is very good, I had one, but have found that lately it is hitting me now...post traumatic stress. I hope to hear from you. Hang in there!
  • mbabcock
    mbabcock Member Posts: 2
    BOO5 said:

    Vulvar Cancer
    Hello, I am 40 years old and found out I had vulvar cancer in April 09. I had two surgeries and chemo and radiation. My treatments stopped in Sept 09. I had a PET Scan in Jan 2010 and it said I was cancer free, however, three weeks later a growth appeared again. I had it removed in Feb 2010. It was cancer again. I found that having a great attidute helps but I am still frustrated. I just needed to talk to others who has this.

    BOO5

    Vulvar Cancer
    You are ahead of me. I went in for a biopsy on a "spot" my gyn. noticed during my pap a month ago. I'm 52 and a smoker.. Next thing I know, he's whacking off half my vulva. In his office, with a local, the nurse almost fainted. He wanted it OUT to send to pathology. He did not get it all, I have appt with gyn/oncologist on Wed, 17th. I am TERRIFIED! I don't even want to find out how bad it is. There is hardly any discussion on this Anywhere. Nobody responds to my questions, which makes me even more scared. I just want to talk to someone who understands, and can just listen, make suggestions, I don't want to be deformed. I'm sorry, but I'm about ready to snap. None of my family thinks this is anything serious, so I didn't tell them that it is. I'm glad I came across your post....
  • mbabcock
    mbabcock Member Posts: 2

    vulvar cancer...me too
    Hello BOO5,
    I am sorry for your cancer diagnosis, and for the recurrence so quickly, I hope it was caught very early for you. I too was diagnosed with vulvar cancer on Dec. 23, 2008, I had a partial radical vulvectomy on Jan 12, 2009. I would be glad to talk to you about this, I felt very alone, because I was never able to talk to another person with vulvar cancer. I had radiation therapy, but did not have chemo. After I finished and recovered from that, I had PET scan in June 2009 and they found nodule on thyroid, and it turned out to be cancer. Honestly I am having a harder time with everything since then. Positive attitude is very good, I had one, but have found that lately it is hitting me now...post traumatic stress. I hope to hear from you. Hang in there!

    Vulvar Cancer
    3 women. That's all I have found after searching for similiar problems. I don't know what to do. I'm so scared. I just need to relate to someone. I'm also bi-polar. I'm a mess! NOBODY talks about this! That scares me too. Please share your story with me. I feel very lonely, too. This all has happened in the last month. I'm overwhelmed. I'm thinking of just not going to the oncologist. I don't want to be deformed and have no support system to help me cope.
  • BOO5
    BOO5 Member Posts: 3
    mbabcock said:

    Vulvar Cancer
    You are ahead of me. I went in for a biopsy on a "spot" my gyn. noticed during my pap a month ago. I'm 52 and a smoker.. Next thing I know, he's whacking off half my vulva. In his office, with a local, the nurse almost fainted. He wanted it OUT to send to pathology. He did not get it all, I have appt with gyn/oncologist on Wed, 17th. I am TERRIFIED! I don't even want to find out how bad it is. There is hardly any discussion on this Anywhere. Nobody responds to my questions, which makes me even more scared. I just want to talk to someone who understands, and can just listen, make suggestions, I don't want to be deformed. I'm sorry, but I'm about ready to snap. None of my family thinks this is anything serious, so I didn't tell them that it is. I'm glad I came across your post....

    Vulvar Cancer
    Hello mbabcock,

    I read your post. What city are you in? I have a wonderful gyn/oncologist in phoenix az. All the research I have found has said this is possible to get through it. I know I told my family right away and the support was very important. I also dealt with it by just having humor in the moment. I have named this cancer "Cootchie cancer". When I was going through chemo and radiation I told my husband I would be a beacon in the night for him. Just try to be positive and get some comedies and laugh yourself silly. I had vulvar cancer for over three years before they found out what it was. Stay tough. If you need someone to talk or write to post your email. I am going to try to set-up a website and a support group for vulvar cancer. I will let you know when it is up and running.
  • funbeadgirl
    funbeadgirl Member Posts: 181
    BOO5 said:

    Vulvar Cancer
    Hello mbabcock,

    I read your post. What city are you in? I have a wonderful gyn/oncologist in phoenix az. All the research I have found has said this is possible to get through it. I know I told my family right away and the support was very important. I also dealt with it by just having humor in the moment. I have named this cancer "Cootchie cancer". When I was going through chemo and radiation I told my husband I would be a beacon in the night for him. Just try to be positive and get some comedies and laugh yourself silly. I had vulvar cancer for over three years before they found out what it was. Stay tough. If you need someone to talk or write to post your email. I am going to try to set-up a website and a support group for vulvar cancer. I will let you know when it is up and running.

    vulvar cnacer support group
    Hi Boo5,
    I saw your post and I would be interested if you get a web site and support group going for vulvar cancer. They have in it the UK and it is great, US needs one too!Thanks.
  • Susie66
    Susie66 Member Posts: 1
    mbabcock said:

    Vulvar Cancer
    3 women. That's all I have found after searching for similiar problems. I don't know what to do. I'm so scared. I just need to relate to someone. I'm also bi-polar. I'm a mess! NOBODY talks about this! That scares me too. Please share your story with me. I feel very lonely, too. This all has happened in the last month. I'm overwhelmed. I'm thinking of just not going to the oncologist. I don't want to be deformed and have no support system to help me cope.

    Hi Mba sorry to hear of your
    Hi Mba sorry to hear of your diagnosis. I can understand how scared you are just the word cancer is enough to scare anyone. When I found out that I had cancer "there" I was so embaressed, scared out of my mind but also not wanting anyone to know.

    I am very happily married and have been for over 20yrs and just the thought of how this could impact my relationship with my husband, not to mention how I feel about myself was enough to send me over the edge and keep me crying for days.

    I did the whole search of the web looking for someone to talk to. Looking for answers of how this happened and what to expect. What I ended up finding was like you, its not really talked about like other cancers. I think most likely because us women get embaressed easily.

    I still havent found myself a friend like I was hopeing to. Someone that I could just email and vent when having a rough day, compare battle storys or just talk about the weather. It would be nice to have someone that you know can relate to what your going threw.

    So seeing your posting I figured I would offer you that if you so desire. My sister is bi-polar so although I am not, I can fully understand how you must be handling this.

    Long story short because I do not really care to type out my life history on a public forum. I was diagnosed (july 09) with stage 2 vulvar cancer (squimish cell carnomia) and have had 3 surgerys since, developed lymphedema since and just am dealing with every day life and recovering.

    Hang in there.. things maybe very scarey to you now but advances in medicine have made the treatements ALOT better then they used to be. And you will get threw this. =)

    feel free to email if you care to
    [email protected]

    Susie.
  • BOO5
    BOO5 Member Posts: 3
    Vulvar Cancer
    I found a great website and support group website. It is eyesontheprize.org It has support groups and you can tell your story about vulvar cancer. Check it out.
  • kevann
    kevann Member Posts: 7
    BOO5 said:

    Vulvar Cancer
    Hello mbabcock,

    I read your post. What city are you in? I have a wonderful gyn/oncologist in phoenix az. All the research I have found has said this is possible to get through it. I know I told my family right away and the support was very important. I also dealt with it by just having humor in the moment. I have named this cancer "Cootchie cancer". When I was going through chemo and radiation I told my husband I would be a beacon in the night for him. Just try to be positive and get some comedies and laugh yourself silly. I had vulvar cancer for over three years before they found out what it was. Stay tough. If you need someone to talk or write to post your email. I am going to try to set-up a website and a support group for vulvar cancer. I will let you know when it is up and running.

    cootchie cancer
    Same type of weird cancer could you email mail me your address? In Canada and our websites point us to the U.S. cause its so rare!!?? Mine is [email protected] Also would love to be a part of your website. Thanks
  • infra3of5
    infra3of5 Member Posts: 1
    mbabcock said:

    Vulvar Cancer
    You are ahead of me. I went in for a biopsy on a "spot" my gyn. noticed during my pap a month ago. I'm 52 and a smoker.. Next thing I know, he's whacking off half my vulva. In his office, with a local, the nurse almost fainted. He wanted it OUT to send to pathology. He did not get it all, I have appt with gyn/oncologist on Wed, 17th. I am TERRIFIED! I don't even want to find out how bad it is. There is hardly any discussion on this Anywhere. Nobody responds to my questions, which makes me even more scared. I just want to talk to someone who understands, and can just listen, make suggestions, I don't want to be deformed. I'm sorry, but I'm about ready to snap. None of my family thinks this is anything serious, so I didn't tell them that it is. I'm glad I came across your post....

    Hi mba
    I am new to this

    Hi mba
    I am new to this site, and have recently been diagnosed with vulvar cancer. I am 58 yrs old and also a smoker. I was diagnosed on March 31, 2010 and my life has become a flurry of gyn/oncology visits. I have had no treatment thus far just biopsy, scans and tests. My family also believes this is nothing serious. I would love to communicate with you. I don't know how helpful I can be since I am still going through all the mazes associated with serious medical concerns. In my case, my primary care physician noted a growth which he told me was a genital wart and nothing to be concerned about. That was 12 years ago. He never commented on it changing at my annual gyn checks...now it's cancer. I am scared and angry, to say the least. My gyn/onc wants to do a wide excision and remove the inguinal lymph nodes. I don't think I am going to agree to the lymph node removal, though. I am still trying to assess if I have adequate time to get follow up opinions. I live near Chicago, IL and have access to lots of teaching hospitals for care.
    Anyway thanks for listening. If you want you can email me at [email protected]

    Infra
  • nsquirrely
    nsquirrely Member Posts: 50
    BOO5 said:

    Vulvar Cancer
    I found a great website and support group website. It is eyesontheprize.org It has support groups and you can tell your story about vulvar cancer. Check it out.

    vulva cancer
    I was dx with vulva skin cell carcinoma stage 3 in 2007. Anyone that wants to talk can contact me @ [email protected] I never had anyone to talk about this with during my treatments. The people in the chat room helped me a lot though. i don't know what I would have done without them.
  • kevann
    kevann Member Posts: 7
    BOO5 said:

    Vulvar Cancer
    I found a great website and support group website. It is eyesontheprize.org It has support groups and you can tell your story about vulvar cancer. Check it out.

    vulvar cancer
    Sorry haven't been checking busy with kids 1 in college and twins grade 7 and work(little lone personal time) Interested in your website,cause every other cancer is so promoted but this one is ahhh and no explaination but better catch it quick. I'am in the healthcare profession, and textbook it says happens to females over 60yrs of age.?? Don't have HPV!! So left in awe with a 12 yr dtr. wondering wether to get her vacinataed with that new shot to prevent HPV not knowing enough info. since they don't know or promte this cancer. I have been going for screening every 6 months and 1 biospy on the verge, told don't need to come back for a year(after 3yrs screening and painful snips) when I went back they told me I had to go through my family Dr. again for a referral since 6 months elasped and by that time I needed another biopsy not much left to pluck!! It seems like every 6momths is due time and if not it would spread like wild fire. I'am frustrated living like this every 6months and no public awareness but breast cancer. It might be easier to have that then chemo. and go from there but this never leaves and no one really understands it. Sorry for venting but I really wish there was a way to get this out. Our cancer society in Canada doesn't acknowledge this only breast and uterine cancer.
  • fightforit
    fightforit Member Posts: 11
    Susie66 said:

    Hi Mba sorry to hear of your
    Hi Mba sorry to hear of your diagnosis. I can understand how scared you are just the word cancer is enough to scare anyone. When I found out that I had cancer "there" I was so embaressed, scared out of my mind but also not wanting anyone to know.

    I am very happily married and have been for over 20yrs and just the thought of how this could impact my relationship with my husband, not to mention how I feel about myself was enough to send me over the edge and keep me crying for days.

    I did the whole search of the web looking for someone to talk to. Looking for answers of how this happened and what to expect. What I ended up finding was like you, its not really talked about like other cancers. I think most likely because us women get embaressed easily.

    I still havent found myself a friend like I was hopeing to. Someone that I could just email and vent when having a rough day, compare battle storys or just talk about the weather. It would be nice to have someone that you know can relate to what your going threw.

    So seeing your posting I figured I would offer you that if you so desire. My sister is bi-polar so although I am not, I can fully understand how you must be handling this.

    Long story short because I do not really care to type out my life history on a public forum. I was diagnosed (july 09) with stage 2 vulvar cancer (squimish cell carnomia) and have had 3 surgerys since, developed lymphedema since and just am dealing with every day life and recovering.

    Hang in there.. things maybe very scarey to you now but advances in medicine have made the treatements ALOT better then they used to be. And you will get threw this. =)

    feel free to email if you care to
    [email protected]

    Susie.

    vulvar
    susie,

    I first came to this sight in 2005. I was 41 yrs. old. I had been diagnosed with vulvar cancer. In the beginning I had gone to my GYN. knowing something was wrong. I was told before exam, no way it only happens to women in their later years. After the loss of the entire right inner and outer labia through surgery, I can say they were full of -------------. I went on line and found csn.
    I thought this was an outlet. Well vulvar cancer was not looked at as a cancer anyone cared to here about or thought was relevant. So I curled up felt sorry for myself for just a minute. My husband was by my side and we are very good. My problem was that 5 yrs. ago I was pushed aside, because it wasn't breast, colon,lung or any of the known cancers. I came back to this site hoping that maybe it had changed. 3900 women get vulvar cancer a year 910 die from it. Small odds for some, big ones for us.
  • mh1229
    mh1229 Member Posts: 22
    Different story..
    I have vulvar melanoma, my statistics are clumped into the 3900 but prognostically it is a bit grimmer and chances of being diagnosed is 1 in 1 million women. Super fun. Treatment is also different. But my coochie suffers just the same ;-)
    It is very frustrating to not have anyone in the same situation. All teh studies are old and treatments are not invested in. There are no "specialists" because it encompasses two different areas... gynocolgical oncology and melanoma. I see a melanoma specialist but when I am not really comfortable with him looking around down there.. especially now.
    Not too many know of the location of my melanoma. When they ask I just say "where the sun doesnt shine" and let them draw their own conclusions.
    I am only 31, way too young for the average age of 60. And connecting with people is impossible. It is a lonely diagnosis. Luckily I do have a great husband and friends. I am also seeing a therapist to help me deal and live my life.
    That said I just had scans that were no good. I go for another scan next week to get a better idea. It is so hard to start to move on just to be kicked down again. If it is sytemic.... my chances are slim. I have young children. I have no choice but to win.
  • txhamilton5
    txhamilton5 Member Posts: 11
    mh1229 said:

    Different story..
    I have vulvar melanoma, my statistics are clumped into the 3900 but prognostically it is a bit grimmer and chances of being diagnosed is 1 in 1 million women. Super fun. Treatment is also different. But my coochie suffers just the same ;-)
    It is very frustrating to not have anyone in the same situation. All teh studies are old and treatments are not invested in. There are no "specialists" because it encompasses two different areas... gynocolgical oncology and melanoma. I see a melanoma specialist but when I am not really comfortable with him looking around down there.. especially now.
    Not too many know of the location of my melanoma. When they ask I just say "where the sun doesnt shine" and let them draw their own conclusions.
    I am only 31, way too young for the average age of 60. And connecting with people is impossible. It is a lonely diagnosis. Luckily I do have a great husband and friends. I am also seeing a therapist to help me deal and live my life.
    That said I just had scans that were no good. I go for another scan next week to get a better idea. It is so hard to start to move on just to be kicked down again. If it is sytemic.... my chances are slim. I have young children. I have no choice but to win.

    same story...
    My mom is going through this right now too. She had a partial radical vulvectomy last September followed by 5 radiation treatments. This July she had a lymph node removed from her groin that was positive. She just finished 5 more radiation treatments. Tomorrow she begins 30 days of intense Interferon treatments. She is 68 years old, which is where this type of cancer is more common (although not really common at all). I would love to correspond with you and possibly have you and my mom connect. It is a scary fight, especially when it is so rare. She has a good support system, however the ability to correspond with someone in the same situation would be good for both of you. Please email me when you get a chance at [email protected] I will pray for you in your battle!
    Stacie
  • bubbles44403
    bubbles44403 Member Posts: 7

    same story...
    My mom is going through this right now too. She had a partial radical vulvectomy last September followed by 5 radiation treatments. This July she had a lymph node removed from her groin that was positive. She just finished 5 more radiation treatments. Tomorrow she begins 30 days of intense Interferon treatments. She is 68 years old, which is where this type of cancer is more common (although not really common at all). I would love to correspond with you and possibly have you and my mom connect. It is a scary fight, especially when it is so rare. She has a good support system, however the ability to correspond with someone in the same situation would be good for both of you. Please email me when you get a chance at [email protected] I will pray for you in your battle!
    Stacie

    Someone new to this
    I came across this site while researching.I was diagnosed 5 years ago with Lichen Sclerosus. Its been a pain just living with that. 3 years ago i was preg and during that pregnancy the Lichen seemed to go into remission. then a good year after that it was clear. then it flared up yet again. I knew there was scar tissue to deal with and thought that this was what was happening in the perinial(sp) area. Due to splitting/healing over top each other. Last week i noticed a lump on the left side. then bleeding came. so here i am thinking it a boil or something. but couldnt sit it hurt so bad. went to the ER cause of the pain and bleeding. he looks at it for literally 20 seconds... says its an abssess and bam.,shot of penicilin and baxtrim script. I went to the GYN today and I get hit with " I am not even gonna biopsy this, I believe you have Vulvar Cancer, im sending you to a specialist". I was shocked, I am scared, but not giving up hope. I keep telling myself she said THINK. But I know there is something wrong there. Im waiting for them to set up the appointment with this specialist that is 3 hours away. This waiting to know what is happening is just the worst. Im glad I came across this site. I have been and will be in the same place as you all with no one to talk to and no on to understand what pain this is.
  • yeahright
    yeahright Member Posts: 54

    Someone new to this
    I came across this site while researching.I was diagnosed 5 years ago with Lichen Sclerosus. Its been a pain just living with that. 3 years ago i was preg and during that pregnancy the Lichen seemed to go into remission. then a good year after that it was clear. then it flared up yet again. I knew there was scar tissue to deal with and thought that this was what was happening in the perinial(sp) area. Due to splitting/healing over top each other. Last week i noticed a lump on the left side. then bleeding came. so here i am thinking it a boil or something. but couldnt sit it hurt so bad. went to the ER cause of the pain and bleeding. he looks at it for literally 20 seconds... says its an abssess and bam.,shot of penicilin and baxtrim script. I went to the GYN today and I get hit with " I am not even gonna biopsy this, I believe you have Vulvar Cancer, im sending you to a specialist". I was shocked, I am scared, but not giving up hope. I keep telling myself she said THINK. But I know there is something wrong there. Im waiting for them to set up the appointment with this specialist that is 3 hours away. This waiting to know what is happening is just the worst. Im glad I came across this site. I have been and will be in the same place as you all with no one to talk to and no on to understand what pain this is.

    bubbles i understand
    I know

    bubbles i understand

    I know how you feel. I went in for a pap and had a concern and told the Dr he did a biospy right on on the spot a week later I get hit with the news. I had to wait at almost a week later to get an appointment with the spealist and that office is two hours away. I think the waiting is the hardest part b/c you dont know. Then I went to the spealist and she said well I cant answer any question until we do the surgery and it takes about two weeks to get the result from that. So for almost a month goes by and all I know is that I have this rare cancer called vulvar cancer. I was like what is that and why haven't i ever heard of that. All I can do is stay in there and pray. I know it is hard. I been in your shoes before. I used this website to help me. You can yell scream do what ever you want and there is always someone here.
  • kdomjan59
    kdomjan59 Member Posts: 1
    Best friend fighting vulvar cancer
    My best friend who is 43 years old has just finished round 5 of Chemo for her vulvar cancer. She had ignored earlier signs because of no insurance. She finally got medi-cal 2 years ago, got the diagnosis of vulvar cancer. She has had a surgery to remove internal tumors and has undergone several radiations and 5 sets of chemo. The minute the chemo stops, new tumors show up. Now she has what I can only describe as a cavernous hole that is being treated by "wound care". She was a single mom whose kids are 23 and 19. Struggled all her life and they are great kids. She is very shy and doesn't ask questions - just accepts what her doctor says. She has a very hard time accepting help from friends and family. She is constantly in pain. Her last doctor visit to receive chemo, he told her they were going to discontinue the chemo for 30 days at which time they will do another CT. She feels as if her doc is giving up on her. I am going do what i can to get a second opinion about this. She is such a good human who has sacrificed so much to take care of her kids. Is there anybody else out there who has endured this much treatment and can tell me what I can do to help her? I am desperate for any/all information. So hard to find any info on this type of cancer because it is usually diagnosed in the early stages. Is there any hope or should we just try to make her as comfortable as possible until the inevitable happens? I would greatly appreciate anything.

    Kat