vulvar cancer

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

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

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 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.

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
mikeswifesue@aol.com

Susie.

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 @ snewland1@hotmail.com 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.

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
mikeswifesue@aol.com

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 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 txhamilton5@gmail.com. I will pray for you in your battle!
Stacie

bubbles44403 said:

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.