I had vulvar , been cancer free for 5yrs.

buterfly

Mariefost said:

Hi I'm Marie and was dx with vulvar cancer back in 2000, had a skinning vulvectomy with removal of the anus and reconstrustion taken from my thigh, anyway i'm now almost to year 5 and having a recurrance myself, but have found a wonderful vulvar cancer support group online for anyone who wishes to join in too. http://health.groups.yahoo.com/group/WomenConqueringCancer/

Thanks for putting that other web site up. I also have vulva cancer and any help I can get is appeciated. Thanks

buterfly

Nancytahoe said:

I was diagonosed with vulvar cancer in Jan 2005. My Dr. is insisting I go thru 30 consecutive treatments of radiation, even after having the tumor and two lymph nodes removed, which came back clear. Please tell me if you underwent radiation, and what your experience with radiation was. I am scared to have the radiation. I have been on "Protocel" an alternative cancer medicine since Feb 14th. Do Dr.'s recommend radiation because they don't know of other alternative medicines, or does it really work for vulvar cancer. I have been experiencing pain in my groin on the right side every since my surgery. It's uncomfortable, but not unbearable as I fear radiation will be. Please be totally honest in you answer, as I am 53 years old, and very reluctant to proceed with radiation.

Thank You,

Nancy Ticknor

Hi my name is Tracy im 34. I also found out in January of this year i had stage 3 vulva cancer. I hope you are getting along well. Its a hard deciding what to do since there is so little information on vulva cancer. I had a radical vulvalectomy,chemo and radiation. All the side effects from radiation arent pleasent. I sometime wonder whats worse the cancer or the treatment for it. well i would love to talk to you sometime. Take care

kimberleec

pneilneal said:

Hi, this is my first time on this site and I'm not sure how this discussion board works, but here goes...

I was diagnosed with VIN III Feb. 2003. I have yet to see the gyn oncologist that my family dr. has referred me to. I've been back and forth with the insurance co. since there is no gyn oncologist in my city, with the nearest being an hour away. The oncologist's office has said that any ob/gyn could perform the laser surgery, I need. After reading about this diagnosis on the Amer. Cancer Society web page, it sounds like my family dr. was right to refer me to a gyn oncologist after talking with the ob/gyn's within her network. My dr. told me that she thought that the laser would probably be all I needed and that this was not unlike the cervical dysplasia that I've been treated for twice in 25 years. She said it was a sort of skin cancer. Skin cancer, in general, is a concern for me because my only sibling died of a melanoma at age 33. I've also read that vulvar melanoma can look similar. Concerning the original biopsy, is that the only test done or should there be more done? I would appreciate hearing from anyone that could give me any information that you only know from going through this. Thanks

Hello, I too was recently diagnosed with VIN3 and I am undergoing a partial vulvalectomy on the 10th of April. I am petrified as they don't know how much they are cutting away until they get in there. I'm concerned will it change my sexuality?
I am divorced with six kids under 16, but I do have a sexual partner. All these things have stressed me out immensely. I was wondering how you got on. I am 41years old.

Wendy Segler

martyg said:

Because vulvar cancer is rare, I feel isolated. There is no one to compare notes with or discuss the situation. Surely there are others who have had a recent bout of vular cancer who feel the same way.

Vulvar cancer
Hi, Martyg, please email me at Wendysegler12@gmail.com. Would really like to know how you are doing! I am a 9 yr. Survivor, so if you want to exchange journeys, and if I can help, will be glad to. Wendy Segler

Wendy Segler

nursekish said:

You are not alone and I would love to compare notes with you. I was diagnosed at my yearly well woman exam with my Gyn. Dr. He noticed a suspicious area and biopsied it and it showed vulvar squamous cell carcinoma. I was referred to a gyn-oncologist and had a wide local excision done in Feb.2002. I just had my yearly well woman exam done and my Dr. found another suspicious area to biopsy but this one is in a different place than the first one. I helped my Dr. find anything suspicious by wearing 2 vinegar soaked maxi-pads an hour before the exam. The vinegar makes abnormal areas turn white and are easily seen with the naked eye. So, now I'm just waiting for the biopsy result to come in. That area of the female body is so sensitive that I dread having another surgery. I had a c-section with my one and only child so I haven't too much experience with cutting pieces of my genitals off. Thank God for 5% Lidocaine ointment! It helps with pain so much as do the sitz baths and ice packs. I think this type of cancer used to be very rare but now that Dr.'s know that the HPV(human papilloma virus) virus can cause vulvar cancer. The HPV showed up on my pathology report from the wide excision. I was shocked as I never have had any STD'S and certainly no warts. Now I feel dirty and decieved. Men carry the HPV virus on their penis and infect every woman they sleep with yet men don't get cancer of the penis from HPV. There are many different strains of the HPV virus and out of all of those approx. 80-some strains, only a handful can cause vulvar cancer. I was told by the gyn-oncologist that the recurrence rate for vulvar cancer is about 30% I hope I'm not going to become just another statistic. Vulvar cancer used to be a disease that gyn.'s usually saw in women in their 70's, now it's being diagnosed in women as young as 32 yrs. old!! I was 47 when I was diagnosed. It just sucks that men have no consequences to pay at all from this awful virus.

Vulvar cancer
Hi nurse kiss, I know your post is old,but I would really like to know how you are doing now, and how did your last biopsy come out? If anyone else on this site has her email address, could you please contact her and give her my email address and tell her I am a 9 year survivor. Thanks. Wendy Segler

Westnp1

Wendy Segler said:

Vulvar cancer
Hi nurse kiss, I know your post is old,but I would really like to know how you are doing now, and how did your last biopsy come out? If anyone else on this site has her email address, could you please contact her and give her my email address and tell her I am a 9 year survivor. Thanks. Wendy Segler

Vulvar cancer

So goodf to know you are a nine year survivor. I was diagnosed in 2014. I would love to know how you found it.

Nancy

Westnp1

buterfly said:

Hi my name is Tracy im 34. I also found out in January of this year i had stage 3 vulva cancer. I hope you are getting along well. Its a hard deciding what to do since there is so little information on vulva cancer. I had a radical vulvalectomy,chemo and radiation. All the side effects from radiation arent pleasent. I sometime wonder whats worse the cancer or the treatment for it. well i would love to talk to you sometime. Take care

Vulvar cancer

I was diagnosed early stage 3 when I found this cancer in 2014.  We had a the same exact treatment. Please let me know how you are getting on.

Nancy

Laura2051

I would love to hear from vulvar cancer survivors

I had vulvar cancer stage 4 ( where it escaped my lymph node and went into the skin). I finished my treatments almost 5 months ago. surgery, 32 radiations, and 6 chemos. Every place I was radiated is still tender. Pain where I got the last few radiation boosts. How are you survivors doing? The statistics say that with my stage level only 54% survive 5 years. I am more than a statistic! I struggle but press on. My radical vulvectomy removed whole top portion of my vagina, no clitoris. I just turned 54 this month, married almost 22 years and mourn the loss of my sexuality.

Rosienp

Westnp1 said:

Vulvar cancer

So goodf to know you are a nine year survivor. I was diagnosed in 2014. I would love to know how you found it.

Nancy

Sorry I am new to this. I was

Sorry I am new to this. I was just diagnosed with vin3. Will be going to gun oncologistas. Soon as appointment is set up.  I will check back in when I know more.

 

chrissymae39

Laura2051 said:

I would love to hear from vulvar cancer survivors

I had vulvar cancer stage 4 ( where it escaped my lymph node and went into the skin). I finished my treatments almost 5 months ago. surgery, 32 radiations, and 6 chemos. Every place I was radiated is still tender. Pain where I got the last few radiation boosts. How are you survivors doing? The statistics say that with my stage level only 54% survive 5 years. I am more than a statistic! I struggle but press on. My radical vulvectomy removed whole top portion of my vagina, no clitoris. I just turned 54 this month, married almost 22 years and mourn the loss of my sexuality.

hello

Hi Laurau,  I am three weeks out from my radical vulvectomy surgery.  I haven't asked the doctor to tell me a stage as I am to scared to know....but of course I know that I had a 2 cm tumor removed from vulva and lymph nodes removed from both right and left groing.  Right groin area all clear but of 11 nodes removed from left groin (tumor was on left side) one was positive for cancer.  Doctor says she isn't recommending radiation at this point in time she is saying becasue it was in only the one node she thinks we can just wait and watch.  How did you know that the cancer had escaped the lymph node and went into the skin?   Did your doctor see it during surgery, did you see it on your skin, did you have a pet scan?  I am wondering if I should ask my doctor to do any other kind of test or if I should push for radiation (as much as I don't want to deal with radiation and side effects of it) I want to give myself the best possible chance for the best possioble outcome.  Any thoughts?

Laura2051

chrissymae39 said:

hello

Hi Laurau,  I am three weeks out from my radical vulvectomy surgery.  I haven't asked the doctor to tell me a stage as I am to scared to know....but of course I know that I had a 2 cm tumor removed from vulva and lymph nodes removed from both right and left groing.  Right groin area all clear but of 11 nodes removed from left groin (tumor was on left side) one was positive for cancer.  Doctor says she isn't recommending radiation at this point in time she is saying becasue it was in only the one node she thinks we can just wait and watch.  How did you know that the cancer had escaped the lymph node and went into the skin?   Did your doctor see it during surgery, did you see it on your skin, did you have a pet scan?  I am wondering if I should ask my doctor to do any other kind of test or if I should push for radiation (as much as I don't want to deal with radiation and side effects of it) I want to give myself the best possible chance for the best possioble outcome.  Any thoughts?

radiation

My Oncologist told me the cancer escaped from one of my lymph nodes into the skin after the surgery. This gave me the level 4 cancer rating and she told me I had no choice but to do radiation and chemo. I had 32 radiations and 6 chemos. Honestly if your cancer was encapsulated in the lymph node and your oncologist is not suggesting radiaiton don't do it. I suffer from pain every night where I had the radiation "boosts", which were the last few extra strong bursts of radiation where my right lymph nodes were. For the best outcome you may consider life style changes that have been shown to help cancer survivors such as vegan lifestyle, or at least LESS meat, and excercise such as walking. Also pray, think good thoughts, believe you are healed. Be thankful for what you have.

chrissymae39

Laura2051 said:

radiation

My Oncologist told me the cancer escaped from one of my lymph nodes into the skin after the surgery. This gave me the level 4 cancer rating and she told me I had no choice but to do radiation and chemo. I had 32 radiations and 6 chemos. Honestly if your cancer was encapsulated in the lymph node and your oncologist is not suggesting radiaiton don't do it. I suffer from pain every night where I had the radiation "boosts", which were the last few extra strong bursts of radiation where my right lymph nodes were. For the best outcome you may consider life style changes that have been shown to help cancer survivors such as vegan lifestyle, or at least LESS meat, and excercise such as walking. Also pray, think good thoughts, believe you are healed. Be thankful for what you have.

Thank You!

Hi Laura,  Thank you for your reply!  I was beginning to get very discouraged with this discussion board as I have posted a few times and it seems like no one is active on this board anymore.  I am happy to make a connection with you.  I appreciate very much you sharing your thoughts with me they are very helpful to me as I make decisions about my treatment.  You were five months post treatment in March so you are 11 months post treatment now.  What is your regemine?  How often do you see your oncologist?  Have you switched over to a vegan lifestyle (or less meat)?  I am going to try this though it will be very hard for me!  What about sugar do you believe eliminating sugar from your diet is necessary or helpful? That is another one that would be hard for me though I am going to try to eat and live healthier!  Do you have any great recipies to share?  I have terrible luck when it comes to health. Car accident at 18 spinal cord injury, auto-immune disease diagnosis at 28. Cancer at 39.  I got past 38 with no major bad news and thought I had broken the pattern....  :-(  I was a passanger in a car when I was 18 the driver fell asleep and drove into oncoming traffic. It was a head on collison for the other driver and broadside impact on the passanger where I was sitting for the car I was in.  They had to use teh Jaws of Life to get me out.  I have a spinal cord injury I use a wheelchair at home and braces and a cane to walk outside of house for short distances.  I lost my "sexuality" (sensation in vagina) 22 years ago....Very hard loss to take and still a disapointment in my life that I have to overcome.....  I do try very hard to be thankful for what I have every day I have lots of practice at it! :-) But Cancer is a whole new dragon to tame and I am growing weary of fighting dragons.

Laura2051

chrissymae39 said:

Thank You!

Hi Laura,  Thank you for your reply!  I was beginning to get very discouraged with this discussion board as I have posted a few times and it seems like no one is active on this board anymore.  I am happy to make a connection with you.  I appreciate very much you sharing your thoughts with me they are very helpful to me as I make decisions about my treatment.  You were five months post treatment in March so you are 11 months post treatment now.  What is your regemine?  How often do you see your oncologist?  Have you switched over to a vegan lifestyle (or less meat)?  I am going to try this though it will be very hard for me!  What about sugar do you believe eliminating sugar from your diet is necessary or helpful? That is another one that would be hard for me though I am going to try to eat and live healthier!  Do you have any great recipies to share?  I have terrible luck when it comes to health. Car accident at 18 spinal cord injury, auto-immune disease diagnosis at 28. Cancer at 39.  I got past 38 with no major bad news and thought I had broken the pattern....  :-(  I was a passanger in a car when I was 18 the driver fell asleep and drove into oncoming traffic. It was a head on collison for the other driver and broadside impact on the passanger where I was sitting for the car I was in.  They had to use teh Jaws of Life to get me out.  I have a spinal cord injury I use a wheelchair at home and braces and a cane to walk outside of house for short distances.  I lost my "sexuality" (sensation in vagina) 22 years ago....Very hard loss to take and still a disapointment in my life that I have to overcome.....  I do try very hard to be thankful for what I have every day I have lots of practice at it! :-) But Cancer is a whole new dragon to tame and I am growing weary of fighting dragons.

Slaying dragons/overcoming

Chrissy mae what a survivor you are !! You go girl!! This last JUly (26) was my 1 year anniversary from having the surgery. This October will be one year from chemo and radiation. I was supposed to see my Oncologist every 3 months but haven't seen her since last December. I also haven't used the vaginal dialators. Not a great example in the catagories I'm afraid. I do walk and watch what I eat. I know that sugar feeds cancer so I don't partake of that very much. Plus I used to be diabetic and do not want that back!  I have an autoimmune disease, celiac disease which means even a small ammount of wheat, barley, or rye makes me very sick so I have to eat gluten free. I don't eat meat for the most part but will eat some eggs and cheese. If I feel like eating a small ammount of meat I don't sweat it . I don't drink juice or sweetened drinks for the most part but once in awhile I may. Life is short, I try to choose healthy things but I allow myself some wiggle room. I eat a small bit of dark chocolate just about everyday.

As far as recipes, there are so many great vegetarian blogs out there with great recipes. Cookie and Kate blog is one of my favorites. I always keep fresh veggies around to whip up a salad and snack on nuts, gluten free crackers and almond butter, gluten free chips and salsa. I make vegetable stir frys too. Do what you feel you can and don't worry about it. Do something good for yourself everyday and be thankful for the little things. I hope you have some good support, friends and family that you can rely on. We are all going to die at some point that is a given, but it is not how we die but how we live! I have pain and some lymphedema everyday but I don't let it stop me from doing what I want and I don't let it change my outlook it is just a part of being alive and I get to be with my husband and kids evryday, what a blessing that is! As we think we become so think good thoughts! Pray, believe you are healed, find things to laugh about, look at nature with wonder. You can do this! 

stellareporter

chrissymae39 said:

hello

Hi Laurau,  I am three weeks out from my radical vulvectomy surgery.  I haven't asked the doctor to tell me a stage as I am to scared to know....but of course I know that I had a 2 cm tumor removed from vulva and lymph nodes removed from both right and left groing.  Right groin area all clear but of 11 nodes removed from left groin (tumor was on left side) one was positive for cancer.  Doctor says she isn't recommending radiation at this point in time she is saying becasue it was in only the one node she thinks we can just wait and watch.  How did you know that the cancer had escaped the lymph node and went into the skin?   Did your doctor see it during surgery, did you see it on your skin, did you have a pet scan?  I am wondering if I should ask my doctor to do any other kind of test or if I should push for radiation (as much as I don't want to deal with radiation and side effects of it) I want to give myself the best possible chance for the best possioble outcome.  Any thoughts?

Hi, Chrissymae!  Looks like

Hi, Chrissymae!  Looks like you had your surgery right after I had mine.  I went to my gyn in November of '16, she saw something she didn't like and did a punch biopsy.  It came back positive and she referred my to gyn oncologist.  My daughter was a sophmore in high school and she was accepted to play in the Macy's Thanksgiving parade on Thanksgiving o we had our trip to NYC already planned.  Going on this trip was great fun but I was nervous the whole time not knowing what was going to happen!  My first appt with oncologist was right after returning home.  Had my first partial vulvectomy December 11, 2016.  She removed part of the outer labia.  Everything looked fine.  I recovered and went back to work in about 3 weeks.  I'm a single mom by the way!  Everything went on as normal.  I went to my 6 month checkup and my oncologist saw something bad.  She did a punch bioipsy of my clitoris (that was NOT fun) and it came back as cancer.  Did my second surgery which was August 17.  She did a skinning, partial radical vulvectomy.  She told me before surgery that this would be a much more aggressive surgery and it would affect me sexually.  I'm 47 and have a great and very understanding boyfriend.  Anyway, just went for my 6 week follow up and everything looks good.  I'm back to work.  I'm still in a little pain, not too bad.  The biggest comnplaint is I'm so tired and I don't want my boyfriend to look at me down there!  I'm hoping I get my energy back soon.  I go to work and then I'm pretty much done!  I won't have to go through chemo or radiation.  How are you doing???

 

chrissymae39

stellareporter said:

Hi, Chrissymae!  Looks like

Hi, Chrissymae!  Looks like you had your surgery right after I had mine.  I went to my gyn in November of '16, she saw something she didn't like and did a punch biopsy.  It came back positive and she referred my to gyn oncologist.  My daughter was a sophmore in high school and she was accepted to play in the Macy's Thanksgiving parade on Thanksgiving o we had our trip to NYC already planned.  Going on this trip was great fun but I was nervous the whole time not knowing what was going to happen!  My first appt with oncologist was right after returning home.  Had my first partial vulvectomy December 11, 2016.  She removed part of the outer labia.  Everything looked fine.  I recovered and went back to work in about 3 weeks.  I'm a single mom by the way!  Everything went on as normal.  I went to my 6 month checkup and my oncologist saw something bad.  She did a punch bioipsy of my clitoris (that was NOT fun) and it came back as cancer.  Did my second surgery which was August 17.  She did a skinning, partial radical vulvectomy.  She told me before surgery that this would be a much more aggressive surgery and it would affect me sexually.  I'm 47 and have a great and very understanding boyfriend.  Anyway, just went for my 6 week follow up and everything looks good.  I'm back to work.  I'm still in a little pain, not too bad.  The biggest comnplaint is I'm so tired and I don't want my boyfriend to look at me down there!  I'm hoping I get my energy back soon.  I go to work and then I'm pretty much done!  I won't have to go through chemo or radiation.  How are you doing???

 

Hi Stellareporter,  What do

Hi Stellareporter,  What do you do for work?  I go back for my next follow up appointment in January.  I am being checked every three months.  I am back to work full time.  I would say I am 99% back to normal physically.  Mentally I am still a work in progress.  My whole thought process and decision making ability took a complete 180 turn with this cancer diagnosis.  It is hard to get back into the everyday routine.  One minute I want to quit everything and run away to hawaii and the next minute I want to curl up in my bed and never leave......so getting up and going to work each day is a bit challenging as it just doesn't feel important anymore....but of course I have to pay the bills.  So for now I am kinda just on cruise control.  How are you?

chrissymae39

Laura2051 said:

Slaying dragons/overcoming

Chrissy mae what a survivor you are !! You go girl!! This last JUly (26) was my 1 year anniversary from having the surgery. This October will be one year from chemo and radiation. I was supposed to see my Oncologist every 3 months but haven't seen her since last December. I also haven't used the vaginal dialators. Not a great example in the catagories I'm afraid. I do walk and watch what I eat. I know that sugar feeds cancer so I don't partake of that very much. Plus I used to be diabetic and do not want that back!  I have an autoimmune disease, celiac disease which means even a small ammount of wheat, barley, or rye makes me very sick so I have to eat gluten free. I don't eat meat for the most part but will eat some eggs and cheese. If I feel like eating a small ammount of meat I don't sweat it . I don't drink juice or sweetened drinks for the most part but once in awhile I may. Life is short, I try to choose healthy things but I allow myself some wiggle room. I eat a small bit of dark chocolate just about everyday.

As far as recipes, there are so many great vegetarian blogs out there with great recipes. Cookie and Kate blog is one of my favorites. I always keep fresh veggies around to whip up a salad and snack on nuts, gluten free crackers and almond butter, gluten free chips and salsa. I make vegetable stir frys too. Do what you feel you can and don't worry about it. Do something good for yourself everyday and be thankful for the little things. I hope you have some good support, friends and family that you can rely on. We are all going to die at some point that is a given, but it is not how we die but how we live! I have pain and some lymphedema everyday but I don't let it stop me from doing what I want and I don't let it change my outlook it is just a part of being alive and I get to be with my husband and kids evryday, what a blessing that is! As we think we become so think good thoughts! Pray, believe you are healed, find things to laugh about, look at nature with wonder. You can do this! 

Hi laura,  thank you for this

Hi laura,  thank you for this advice and sharing your experience with me.  I do have lots of support to help me through.  My friends, family and husband are very loving and supportive.  Glad to know you are doing so well. Thanks again for sharing with me.