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I had vulvar , been cancer free for 5yrs.

shannon405
Posts: 1
Joined: Mar 2001

would like to talk to someone with the same shannon405

martyg
Posts: 5
Joined: Apr 2002

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.

nursekish
Posts: 3
Joined: Jan 2003

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.

dcarl
Posts: 41
Joined: Feb 2003

just curious, since my doc didn't dwell on how I got vulvar cancer, is the only cause the hp virus? I hate to think this could have been avoided. I can't believe that only men can carry the virus that can afflict women like this. there has to be another reason we have vulvar cancer. You sound very bitter toward men. I was diagnosed at the age of 37. If older women are usually the victims, how can transferrence from men be the root cause? I understand older women are sexually active but I can't see multiple partners where you would run into men carrying the virus. Maybe I'm just skeptical.

tinydragon's picture
tinydragon
Posts: 1
Joined: Feb 2003

Well! I just learned something from you! Men had a contributing factor in my vulvar cancer also. HPV of various sorts being another STD that causes female genital cancers. I am so angry. And yet... I was part of the '60's "free love" age. Perhaps I am as much to blame as any man? As far as having pieces of your genitals cut off, I've had most of my left vulva removed because of the Paget's. It'll be my 5-year checkup in June. I deliberately made the date move farther into the future by not making an appointment until 3 months late last year. I want a little extra time to be sure nothing develops while no one's watching. I was told the recurrance rate is 25 percent, small difference only perhaps between life and death? Men do have a price to pay. They'll run out of women who'll have anything to do with them. We need to inform each other, don't we? The best to you, nurse kish.

WendyD
Posts: 7
Joined: Mar 2003

Hi! I'm new to this site, however, I , too, have fought with Vulvar Cancer. i was dx'd last December 12,2001 while pregant with my 2nd child. I've had a few excisions, and as of my last check , in Dec, I was cancer free, however, I am noticing some symptoms that I know need to be checked, but am of course, scared to death to go.
A word on HPV.. yes, it is a STD, but, about 80% of the population has it. I belong to an on-line gyn cancer support group (many, many cases of vulvar cancer) and they have some amazing information.
I'd love to compare notes, too.
Has anyone else discoussed the differences between lazer removeal, and excision> I, myself, prefer excision, but the GYN ONC was incredilous that I preferred that to laser. When I explained to him my doubts and reservations about receiveing clear margins, and no patholody report from laser treatment, he still pressed for it. Needless to say, I stopped seeing him.
Oh, and for the record, I'm 32. :) and my son was born healthy , although a few weeks early a year ago in Feb. He was a c-sect due to unrelated issues.

Suzieg
Posts: 1
Joined: Mar 2003

Hi, I just had a biopsy done today, and am waiting for the results. I am 7 months pregnant and am scared to death. What the docotr found is a light area of sckin on my fulva. I would like to hear more about the support group you have and any additional information you may have regarding this cancer.

AuthorUnknown
Posts: 1560
Joined: May 2006

Hi WendyD. I am also new to this site but I have had three operation all for for partial vulvectomy's and a hemivulvectomy I am only 31 and the third episode was discovered when I was five months pregnant with my daughter whom was borm by C-section for other reason's. Since then the dysplasia grew back within 4 weeks and have just come out of hospital and felt like I have 3 three babies in the past two years. I am so petrified that it will return as I would like one more child and not by C-Section but they say since the perinium has been so compromised I have no choice (I'll fight that one). I would love to talk to you as I think we have alot in common and it is nice to know you are not the only one in the world at the age of 31 years old (not 50 or 60) suffering from this embarrising and consistent problem. It just won't go away and it frightens me so much.
I would love to hear from you my direct email is:summerfield@dodo.com.au
Kindest regards and luck
Sacha

AuthorUnknown
Posts: 1560
Joined: May 2006

I read your post about on-line cancer support group with lots of vulvar cancer people. I would like to know what site that is...I have recurrent vulvar cancer. Please email me: mmsbmail@verizon.net

pneilneal
Posts: 2
Joined: Mar 2003

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

kimberleec's picture
kimberleec
Posts: 2
Joined: Mar 2007

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.

lilflutterb
Posts: 2
Joined: Mar 2004

i was just diagonosed with vulvar cancer in feb, i had my first treatment of radiation this monday the 22, i,m scared cos i hear how painfull this is and i don,t deal with pain very well at all. so far it,s not been bad but its only my second treatment.any body who can talk to me i,d greatly appreciate it. i don,t know how i got it my paps always came back ok and i have,nt been with any man for almost 10 years so i,m kinda baffeled as to how i got this. anybody please talk to me and help me understand what questions to ask and what i,m looking at in the future

mariejoyce
Posts: 7
Joined: Nov 2004

Hi
I understand there are so few of us with Vulva C. Only about 8000 cases a yr. I suppose all of us wonder "Why Me". I had a small lump appear on my left Vulva over 6 years ago. When I drew it to My Doctors attention, she said it was Herpes 2. I thought this was impossible as I have been married for 49 years & My Husband was My only partner. After being treated for 3 years for Herpes (to no avail) I chose another Dr. She also said I had Herpes 2. After another 2 years I finally convinced her to do a Biopsy. Low & behold!! It was Basal Cell Carcinoma. I had surgery on Sept 13, 2004 & the follow-up complications have been a nightmare. Hemmoraging, Hematoma, & now I had a hole open in the groin incision that has been draining blood for over 5 weeks.
Would love to communicate with you...
Mariejoyce

Wendy Segler
Posts: 46
Joined: Sep 2011

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
Posts: 4
Joined: Mar 2017

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

Rosienp
Posts: 1
Joined: Mar 2017

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.

 

Wendyl127
Posts: 2
Joined: Apr 2003

Does anyone out there have experience with radiation for vulvar cancer? I have an even more rare kind of cancer, which is cancer of the Barthelins gland and I had one positive lymph node. They want to do radiation and I'm really scared, since it is such a sensitive area. I'd love to hear from anyone with Barthelins gland cancer or anyone who's had radiation to the vulva.

jeangib
Posts: 3
Joined: Apr 2003

I had radiation to the vulva and all surrounding areas. It was not very pleasant. I had first and second degree burns but then they reduced the amount of radiation and i came out o.k. I don't want to go through that again.

Nancytahoe's picture
Nancytahoe
Posts: 31
Joined: Feb 2005

I was diagnosed with Vulvar Cancer in Jan 2005. Although the Dr. told my husband and mother he was confident he removed the tumor and lymph nodes deep enough that they came back clean, now he tells me he reccomends 5 days a week ,6 weeks of radiation. I am scared to have that done as I am afraid of perferating my urethea,bladder,rectom, and intestines from the radiation. I have been taking "Protocel" an alternative cancer medicine since Feb 15th, which destroys cancer cells. I would love to hear your "actual" true comments as to what you experienced going thru radiation of the groin?

Thank You,

Nancy Tahoe

AuthorUnknown
Posts: 1560
Joined: May 2006

Hello,

You may want to consider contacting this individual through the CSN internal email system in case this individual is no longer visiting the disucssion boards. You can do this by clicking on the envelope icon on their original message.

Take care and be well,

Dana
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Wendy Segler
Posts: 46
Joined: Sep 2011

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

nursekish
Posts: 3
Joined: Jan 2003

I was diagnosed with vulvar cancer in Jan.2002. In Feb.2002 I had a local wide excision done by a gyn-oncologist and the margins were clear....they got all the cancer. Good news!!! I just had my yearly exam done and my gyn. found another lesion in a different location and he did another biopsy. I hate to be cut on down there because that area is loaded full of nerve endings and makes for a painful recovery. Now I'm just waiting for results and a plan. I hate this waiting!!!! :( The gyn-oncologist told me that the reccurance rate for this type of cancer is about 30%. I'm hoping not to become another statistic. I feel so isolated,dirty, and decieved.

cinsan2
Posts: 1
Joined: Jan 2004

Hi, I had vulvar cancer also, I need information on this not sure where to turn to. Please help.

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Mariefost's picture
Mariefost
Posts: 8
Joined: Jan 2004

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/

buterfly
Posts: 3
Joined: Jun 2005

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

Nancytahoe's picture
Nancytahoe
Posts: 31
Joined: Feb 2005

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

buterfly
Posts: 3
Joined: Jun 2005

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

Westnp1
Posts: 4
Joined: Mar 2017

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
Posts: 26
Joined: Aug 2016

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.

chrissymae39's picture
chrissymae39
Posts: 16
Joined: Aug 2017

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
Posts: 26
Joined: Aug 2016

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.

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chrissymae39
Posts: 16
Joined: Aug 2017

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
Posts: 26
Joined: Aug 2016

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! 

chrissymae39's picture
chrissymae39
Posts: 16
Joined: Aug 2017

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.

stellareporter's picture
stellareporter
Posts: 6
Joined: Jul 2017

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's picture
chrissymae39
Posts: 16
Joined: Aug 2017

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?

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