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Vulvar Cancer just had surgery

yeahright
Posts: 54
Joined: May 2010

I just had surgery for my vulvar cancer. I had a readicale and both nodes removed. I dont know what stage I am at. They told me they would know on my next appointment. I guess it is hard just sitting here waiting to see what the next step is. I know I have vulvar cancer but that is all how bad how advanced. I wished I had the answers to these questions. I have alot of questions but I cant get any thing until my other results come back. I think the stange thing is this is a rare cancer that people dont talk about. If you been where I am at please help

funbeadgirl
Posts: 150
Joined: Jan 2009

I had surgery for vulvar cancer in Jan 2009, I had a partial radical vulvectomy, with only 5 nodes removed, and cancer had spread to only i node, I was staged at a Stage 3. I would be glad to answer any question you have, I too think it is a shame that no one wants to talk about this cancer. You are right it is rare, but becoming more common actually. There are several different types of vulvar cancer, mine was an adenocarcinoma, meaning it was deep in the glands,I have never found another person with my diagnosis,but I have talked with ladies that had the squamous cell vulvar cancer. I hope you are doing o.k., hope to hear from you.

yeahright
Posts: 54
Joined: May 2010

Thank you for your post. Right now I dont know what to think or how to feel until Monday. I had my surgery a week ago today. I am doing great. I went to Walmart today and was able to walk around. i brought some of those mesh underware from amazon so those helps alot. My pain is under contol. I have a nurse that comes out two times a week b/c I have two jackson pratts and staples sooo I am hoping that on MOnday that those come out. I am also hoping that all I had to do is this surgery but I haven't read anyone post that said all they had was the surgery. Also my nurse said she only seen two people with this cancer and I am the youngest I am 29 years old and that threw my gyn for a loop. He was not expecting this b/c of my age. My gyn was great when he told me the news he already had my dr appt set up with the on/gyn. She is great as well. I just ready to know what my next step is so I can begin fighting and kicking cancer butt

Toast
Posts: 33
Joined: May 2010

Hi!
I had a wide excision for VIN III last week. Have you been able to get any info from your doctor yet? Waiting is torture!!!
I understand the whole "people not talking about this cancer". Some seem embarrassed, some act like I must be having orgies to "catch" this, others have made disgusting comments. I could use a pal to talk with!

yeahright
Posts: 54
Joined: May 2010

I have a Dr appt in a couple of days. I know "waiting is toture". I know how it feel it seems like I have a over sized STD. People ask me how did I get it. I say it is cancer you dont catch cancer like a cold. Would you ask a person with breast cancer that question

nsquirrely
Posts: 50
Joined: May 2007

I have had vulva squamous skin cell carcinoma stage three. I would be happy to answer any questions or talk to anyone in need of support. My email address is snewland1@hotmail.com. Feel free to contact me. i know how hard this topic can be to talk about with others.

jacquelynbg
Posts: 3
Joined: May 2010

i had surgery 2/09 and found out 2 wks ago the pap smears were abnormal and had a biopsy all i can get from the onocologist is "when do you want to schedule surgery" i had a large place removed and the laser last time. guess i didn't expect this to come back and don't quite know what to think. makes you feel like you've done something wrong i'm 60 and been married for 40 yrs. the burning and itching is rediculous. wanted to get an answer about the cancer spreading anywhere else in my body but haven't gotten any.
any information would be greatly appreciated

dananappi
Posts: 4
Joined: Dec 2011

I have had 4 surgerys for VIN3 in the last 10 years, its back again, they want to do surgery again, I am thinking I wont, mostly because its probably preexisting and my deductable is 5,000.00 What a world that we cant get the healthcare we need.

Toast
Posts: 33
Joined: May 2010

I hear you yeahright. I'm getting jealous that breast cancer even gets a special color! Maybe we should claim a color and decorate the world with ribbons!!! LOL! :)

yeahright
Posts: 54
Joined: May 2010

i know right. But I do have a update on my status. I just came from my follow up appointment from my surgery. I have (had) stage 1B vulvar cancer. My doctor said that she was able to remove all of the cancer durning my surgery. I still have my jackson pretts and they might be removed next week. All I have to do is go to check up every 3 months

Toast
Posts: 33
Joined: May 2010

I am so glad to hear the waiting led to finding out that the cancer has "left the building"!!! I'm waiting for my follow up appointment -- but already harrassed the oncology nurse into giving me a bunch of info (LOL!) and expect to hear the same news! Yeah!
I'm thinking of seeking out a nutritionist to help me boost my immune system.
Has anyone else out there gone down that road?

yeahright
Posts: 54
Joined: May 2010

Thanks Toast. I was so happy when I heard the news. I was able to sleep through the night and into the afternoon. I woke up around 1100. right before my nurse came over to check the jackson pratts. I hope and you hear the same news. I never thought about seeing a nutritionist about my immune system. That sounds like a great idea. I am going to look into that myself. Well again good luck on your appointment.

Terri37
Posts: 1
Joined: Sep 2010

Yeah right, I read that you had "jackson pretts" what exactly is that? I just had surgery 8/31/10, I have about 3 inches of stitches on my right side and they "burnt" did laser surgery to both sides about 70%. I have three small children, two 2 yr olds and one 3 yr old. The hardest thing is feeling guilty that I want to be left alone. I have been in so much pain and they just want me to hold them. I am not sure what I was diagnosed with and wont till i go back on the 7th for my post op when they have my results back. I just wanted to know if you or anyone knew how long I would be in this pain? On top of all I started my period yesterday morning and omg i thought it couldnt get worse. I have also had Merca about 4 times and the nurse says it can complicate things if it gets infected but I've been trying to keep the antibiotic cream on it and take 3 sits bath a day. I am just at my wits end with the pain and my lovely husband (sarcasm) keeps saying when are you gonna get better and maybe if you start doing the things you use to do you will feel better. He does feel bad when he sees me crying just to pee, but it goes away then he jokes about having sex and thinks its funny. I just needed to chat with people that have gone through this and knows what it feels like. I hope everyone is doing good and might have some light in my dark tunnel.

sherafrobe
Posts: 1
Joined: Nov 2011

lavender is the color for the awareness of gyne cancers. My kids and I had the silicone bracelets made

jacquelynbg
Posts: 3
Joined: May 2010

your right, people act like i went to the streets to catch VINIII, ? i haven't been able to talk to anyone that has had surgery several times for this. i don't seem to be able to get the onocologist to give me any answers. the last time was come back in 4-5 months and did and had surgery again last week. not very comforting. the first surgery was VINIII and they said all the margins were clear. guess not, don't know. wish I understood how this keeps spreading. is the next step some type of chemo does anyone know?
thanks

mh1229
Posts: 22
Joined: May 2010

I am still in recovery mode from vulvar melanoma. Stage 3a. 3 tries for clear margins, leaving me disfigured and missing parts. It has been a rough road and have had trouble healing. 2 out of 3 times my stitches have popped open, leaving an open wound. I just had the foley catheter removed after 3 weeks. That was no fun.
No one really knows where my melanoma was. Just that I have melanoma. Really, how do you explain you have a cancer usually do to sun exposure in a place that NEVER sees the sun?

I am getting ready to start therapy June 30th. Hoping the cancer is all gone but realizing I need to do everything possible to be here for my 4 kids and hubby. It has been an interesting journey but am glad to be done with surgery. I son't know if I could have done that again. The second time was hard. I looked right after surgery and it was very traumatic. Third time I waited a week but it didn't really matter. I try and remember it is just skin, but it is so devastating. So disfiguring. I feel mangled and undesirable. So awful.

I am hopeful, though. I know it doesn't sound it... but now that surgery is over I know things will heal and I will find the new me, the new normal. It is going to be okay.

Melanie

pjbarry13
Posts: 2
Joined: Jun 2010

I am waiting for surgery # 4 - last one was in 2005 and a partial vulvectomy. This on will be more extensive. I am 60 and my first two battles with this were in the 80's with two very painful laser surgeries. Obviously, there is some reason this recurs. Makes you feel like you are a dirty freak! At my age, there is no reason by allopathic medical standards for this to come back....so I am looking into alternative treatments. I don't know how many more times I can deal with this.....it is like living under a huge black cloud waiting for your next biopsy to be the ax! Good luck with your recovery.
Judy

yeahright
Posts: 54
Joined: May 2010

I dont understand why they keep chopping and chopping away it seems like the cancer comes back. Why dont they just do chemo to begin with. Why do they wait until surgery three or four. It seems like everyone on this thread vulvar cancer came back. Why do the Dr just treat it like a pulled musle just put some ice on it. They just like ohh we will just do another surgery. That is not the right answer.

dananappi
Posts: 4
Joined: Dec 2011

PJbarry, My Vin3 is back again, not sure (and cant afford) the surgery right now... what is your opinion and just waiting till I find a job with insurance ?

Rcrawford
Posts: 1
Joined: Jul 2010

I was diagnosed with squamous cell carcinom in situ of the vulva Or Bowens disease, had no symptoms what so ever. Gyno found a spot during a check up. I had no clue it was there. Found a womderful gyno oncologist. He did a vulvectomy 1week ago today, I feel terrible because of the itching. It is almost unbearable. My follow up a ppt is the 26th. I guess at that time we will discuss followup treatments if any. It sounds like it should not be a matter of if I get this back, but WHEN! I am 48 years old. Never had an abnormal pap smear nor any diagnosis for HPV, I did used to smoke but quit 3 years ago. My doctor said this was probably caused from smoking, I am starting to feel nervous and anxious all over again. Don I have to look forward to more lesions, more surgery, more lesions, more laser. When will it stop, do they offer chemotherapy and radiation so hoprfully it will be gone forever. Sometimes I feel alone and isolated with this diagnosis. People act like everyone who has it has HPV and that is not true. I know many people are so much worse than I am. But sometimes I get really scared. I am very grateful for this sight. I am so very tired. The dr. Has given me silver sulfadiazine. How long will this itching last. I AM MISERABlE. Thank you

kimkimgirl
Posts: 1
Joined: Jul 2010

mh1229,
I've had disfiguring cancer treatments that left me post-menopausal at the age of 36. The radiation did a lot of damage to my vagina, and it's difficult to have intercourse. I also have feelings of inadequacy when it comes to intimacy. I'm 40 now, and not much has changed. I also have that feeling of being "mangled". I never had surgery to remove my reproductive organs, but the radiation did so much damage that it's impossible to have a normal sex life. I think you should rethink your idea of it being just skin. Our sex makes up so much of who we are and how we think others perceive us. It is very devastating and a big part of yourself. I hope someday for corrective surgery, but I don't know if that will happen. In the meantime, I too continue to be frustrated and disappointed and scared.
Kim

funbeadgirl
Posts: 150
Joined: Jan 2009

dear kim,
i am so sorry for what you have had to go through at such a young age, I am 57 and have gone through a radical vulvectomy (Jan 09) for vulvar adenocarcinoma,which put me in instant menopause (i had not started that yet), and radiation, so i do know where you are coming from. I will give you a little perspective and a suggestion. First of all, let me say that how you feel is how you feel and no one should minimize that and secondly, there is help available to make your intimacy issues better.
I did not have any body image issues per se, but have had issues with the fact my life will never be the same...in the sense that every little health issue seems to go back to the cancer and I feel as if I can't get past it. I was also diagnosed with a second unrelated cancer 3 months after I finished my radiation for the vulvar cancer, so I had a double whammy: 2 surgeries and 2 treatments.What I learned about myself is that I am strong and resilient. I made a conscious decision to hit my illnesses head on and be positive about it, as a result I did lots or research, asked lots of questions and searched out a resolution to my physical issue with intimacy(I am older, but not dead, and I wasn't about to give 'it' up).
I was referred to a doctor that is a womens health specialist, she deals with women who have gone through cancer and cancer treatments and the issues that rise from that, I lovingly call her my sex doctor, ha ha! She has helped me to get back to 95% of what I was before.There are ways to treat these issues, so please ask your doctor about it, or talk to his nurse if you feel more comfortable. This can be a hard issue for women to talk about, as is vulvar cancer(how do you tell someone about that?), but the more open we are about it, the better for ourselves and all women. That is also probably one of the biggest things I did during my 'event' as I called it...I was very open talking about my cancer and decided to get over being embarrassed...I also am a big proponent for other women to do a monthly self on the vulva area.
My heart really feels for you kimkim, I wish I could make you feel whole again or say something to make you feel better. I guess in sharing my experience with you I am trying to help you see that things can get better, I just want to encourage you and give you HOPE. If you want more detail about what treatments I had for the sexual issues, I will be glad to tell you about it.Hang in there!

dananappi
Posts: 4
Joined: Dec 2011

Dear funbead girl , I have had 4 surgerys for VIN3, and my sex life is horrible, my husband of 25 years is frustrated. I am 52 years old now, my gyne just wants to do more surgery and ignores the sex part. I also had a hysterectomy at 45.

funbeadgirl
Posts: 150
Joined: Jan 2009

dear dananappi, so sorry to hear about your recurrent vulvar issues and surgeries. I am sure it is frustrating. Since I posted that last response, my vulvar cancer has metastasized to my femur bone, I have had another surgery, another round of radiation and am now in chemotherapy. Honestly, today I am looking for reasons to quit it all, the side effects are terrible, I am sick, tired, in pain and my life will never be the same.BUT, I am also looking for reasons to continue, to find my health again and live a full life, whether or not that will ever include a 'sexual' relationship again. I have posted before that intimacy is more than the sex act, and that is what people need to find between them.I am very fortunate to be married for 38 yrs and my husband and I are on the same page with all of this, we made a conscious decision to not put emphasis on this one particular thing, but really the other things in our relationship that make us happy and secure. I realize that is easier said than done for many people, but I only mention it as something to think about. Even still, there are doctors out there that can address these issues and work with you to return to some normalcy.Patience and understanding are key, and education for yourself and your husband is essential.I found that my gyn/onco's nurse was a great source of information for me, maybe you could talk to the nurse and let her know what a hard time this is for you. I hate what cancer has done to my life, and seeing how many others, such as on this board are affected by it also but what I have learned in the past 3 years is that while cancer can overtake your life to a certain extent, we don't have to allow it to control it, we still have control over how we approach and react to what ever our particular situation is. I truly wish you the best and I am so sorry that you have to face another surgery,my hope for you and your husband is to get through it all and be stronger in the end.

Lady Gardener
Posts: 1
Joined: Jun 2010

yeahright- I am right with you. I have had 4 surgeries for vulvar cancer & have just returned from the oncologist today & found I have more areas of the bad stuff. She (the doc) has given me a prescription for Aldara cream to try instead of another surgery. I have been researching this cream when I found this board & your post. My heart went out to you with all of your questions, waiting & just plain not knowing - due to it being such a rare form of cancer & it not being discussed due to where it is. After my first diagnosis, I found several friends who had been thru the same thing. Yes it is aggravating, a very aggravating thing to deal with but you can. It can be painful; some days are better than others, sometimes it feels ok down there at the beginning of the day & later it is annoying again. To have a whole day with no discomfort is such a blessing tho few & far between. Urinating can be just awful, I sometimes look like a frog perched on the toilet with my feet & hands on the floor, in order to keep the flow of urine from the effected area! Go ahead & laugh, we have to find humor where we can in life.......
I am apprehensive to try the cream Aldara due to what I have read before finding this website. So if any of you have had good results with Aldara, please post. Also, I am having a hard time imagining how to keep the cream from other uneffected areas-in the vulva area, everything is so closely connected, how is this possible? Any hints would be appreciated.
Yeahright- if you have any questions about surgery of this area, please ask; as I said, I have had 4 surgeries for this problem; removal of right side of vulva & laser. I am happy to help you if I can, just know you are not alone now.

yeahright
Posts: 54
Joined: May 2010

Lady G thank you so much for you words and thoughts

First I would like to ask how are you doing? I only had one surgery and it was hard for me and to hear that you already had four my heart goes out to you. I dont know if I would be able to do that but going through this I will never say I dont know if I can do it again. I think if they found more I would do the surgery again then tell them that I want to do chemo. I know chemo it hard to go through right now I good friend of mine is going through chemo and she has some bad days after her chemo but a couple of days later she is feeling fine. I rather for them to treat all the cells then to keep chopping pieces of me little at a time. Thats is why my heart goes out to you and your story gives me strenght to keep going. This days I am feeling better I am two months post op and it is still kind of sore. I was cheering at a game on each time I yelled it hurted I was like wow when is this going to end. I still seating funny. I am well enough to go back to work next week BOOOO LOL but that means I am healing well and getting better. I also go back to the dr next week as well. I am on a single mission to tell women about this cancer letting them know you cant go just alone with the yearly pap smear I had my biopsy the same day as my pap and my pap came back normal but the biopsy didnt. the pap only does the inside not the outside and it is our responsiblity to do a self exam down there just like you do your breast every month. The Dr need to tell women that b/c the sooner you know the better your out come is.

As far as the cream they gave it to me many years ago I didnt like it but i went for another try last year and I refused to use it again b/c I had such a hard time with it. So when I told the Dr I refuse to use it again crazy as it sound thats when the dr took a real good look at the area and dec to do a diopsy and thats is when I was dx with the cancer and if they try to give it to me again I still will refuse b/c I used it and it did nothing but burn the crap out of me it hurted so bad that I hardly could sit down for a week it was so pain that it would almost bring me to tears and lets me mention trying to go potty. But that my idea about the cream I hard many good stories from other women on this thread you should do a thread asking aboout the cream.

Thank you again for your words I hope that you continue on this thread it helped through my journey fighting this cancer. It also help me know that I am not alone and it got me through my day one and I want to help someone through there day one two and three

ishma
Posts: 1
Joined: Jun 2010

Hi!
My mother was diagnosed with vulvar cancer and i fell awful,so as well my mother do.I don't know what to tell her and how can i encourage her.She's going to have vulvectomy with limphadenomectomy,and the doctor told me this intervention is mutilating.My mother is having 60 years old and i am getting married on october 2nd,and i hope my mother is going to be ok until then.She is going to start with radiotherapy before op.How paintfull is after operation?Is she going to be fine at my wedding?what are the prognostic for this tipes of cancer?
You are a hero,i am very proud of you,you are so strong!FITE WITH THIS DEASES!!!DON'T LET IT BREAK YOU DOWN!!!

yeahright
Posts: 54
Joined: May 2010

Ishma,

I am sorry to hear about your mother dx. This is such a ugly cancer but it does have a high success rate. On th flip side it take a very emotional toll on a females self esteem. I was very scared to look at the scars at first. Each person heals at their own pace. My mother came down to take care of me for three weeks. She kept me drugged up for the first two weeks and I ask her why she said that the pain meds kept me sleep and gave me rest to heal. I think resting will help you heal faster. It drove me crazy for awhile but I had my laptop and books and other things to do to keep my busy she also gave me mile stone if I did well at things she slowly let me do other like I can set in the living room for a couple of hours to she finally let me go to the store. Trust me it was hard I am 29 years old and I have two children so sitting in the house all day was not up my ally. I think one of the hardest things I had to deal with was not being able to play with my kids but she let them come in the room and play on the floor and sometimes they slept at the end of the bed. I had to drainage tubs and she didnt want them rolling on them. Plus she said that kids carrying germs and I just had surgery and didnt want me getting sick. My mom was a great part of my recovery and I healed very quickly. So with that being said have a good support group is outstanding. I dont live in the same state with my mom and she took 3 weeks of vacation.

I hope that your mom recover quickly. I will pray for her and thank you for your kind words. I just want to help people the way the other ladies help me. May God Bless you and you family!!!!

zehros
Posts: 5
Joined: Jul 2009

I haven't posted here for a while because to be honest I just sometimes want to forget I have this horrid condition.I have had VIN III for over 25+ yrs now and endured numerous sugeries, in fact after 9 different operations I stopped counting. I was also a research patient for Photdynamic Therapy which sadly was not successful. Being a medical professional myself is of no comfort whatsoever! Though I do receive news of current research (which I have posted).
My Oncologist now tells me, like I didn't know!, that it is now speading to my rectal area.My last surgery was vulval/rectal and the pain was horrendous. I am indeed mutilated and what seems somewhat worse it that only the right side is affected. So huge areas of tissue removed there so much so that its hard keeping my underwear in place sometimes! I really do hope you lovely ladies have the support of your partner/husband because sadly I didn't. I work in a busy teaching hospital in Glasgow, Scotland and my family live some 6hrs drive away in England. I now live here alone and cope with this on my own. My Consultant Gyn/Onc is in Leeds, England and so I travel some 6yrs for appointments and treatment. I have been under his care for some 18+yrs and trust him. However travelling home post surgery is problematic to say the least.
I have been on my own now without a partner for some 6yrs though some nice men have shown an interest I don't take it further because, and I'm sure you will all understand this, who wants to explain this condition to a new relationship?
I cannot use soap of any kind as this provokes sore (even more)areas. I use aqueous cream and warm water which does soothe it somewhat. I am due to see my Onc again soon and I know there will be more biopsies and further surgery. He is a wonderful man and a brilliant surgeon and takes pains to chat informally which almost makes me feel normal!
The good aspect of surgery and care here in the UK is that it is free. My surgeon does try to keep surgery down to the minimum but after all these surgical interventions I still feel mutilated and unwilling to commence any relationships. My good thoughts go to you all and its so good to chat to others who understand. Take care.

Zehros

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