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What cancer patients, their families, and caregivers need to know about COVID-19.

Vulvectomy

VFisk
Posts: 3
Joined: Apr 2003

I am new here. I had a LEEP done in '93 and didn't think anything of it. My Dr. was not concerned so why should I be. I had a vulvectomy on 03/27/02, the right side. It was squamous cell, skin cancer. I just had another surgery on 02/07/03 for the same thing, this time laser and 2 tumors on the left and 2 tumors on the right. There is alot gone now and I am having a hard time coping. Sorry for the horrible spelling. I know I am not alone, but would like some inspiration.

WendyD
Posts: 7
Joined: Mar 2003

First of all, YOU ARE NOT ALONE> That is what I found to be one of the worst things aobut this cancer.
I have had VIN III on and off for a while now, actually had a big biopsy taken yesterday,a nd waiting on the path report. Email anytime for support!

VFisk
Posts: 3
Joined: Apr 2003

Thanks for the reply WendyD.

dbalexis04
Posts: 1
Joined: Jan 2004

Hi WendyD! I am new to the site and am in need of some support. I was diagnosed with vulvar cancer in Sept. 03, had a radical vulvectomy on 11-20-03 and then spent 30 days in the hospital due to complications. I went into this with the Dr telling me about 4-hours for surgery and ended up with 11 + hours of surgery due to the extent of the cancer. I had changed OB/GYNs this year due to insurance, after seeing the same Dr for 15 years. He told me I had hemmeroids and I trusted him. God was I wrong. As soon as I got on the table for my new Dr she asked me how long I had had the sores, when I replied with "you mean those hemeroids?" She replied "honey these are not hemeroids." I have been thru hell and back since and been off work for 2 months now and not sure when I will be able to go back. My biggest fear after looking in a mirror at my bottom I am scared to death that no man will ever want me again once they see how awful I look. I want to know if there is any such thin as normal life after any type of female cancer and whether I will see that normalcy again. Right now I am just trying to take one day at a time, but some days are really rough. I am blessed with a wonderful circle of friends who support me and tell me everything is going to be O.K., but they have not walked in my shoes or had any type of cancer and sometimes I feel they are just placating me. I would dearly love to have someone who has been there, done that to talk with. Some nites the tears just roll and tonite is one of those.

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angel813's picture
angel813
Posts: 6
Joined: Jan 2002

Hi...I want to tell you not to worry about men wanting you. If they don't ..for that reason...you don't want them. I had my left labia removed and part of my clitoris in 1973 from rhabdomyosarcoma at the age of 16. I have been married 3 times since then and have had 5 kids, 3 grand kids now.I was already sexually active at 16 and just did not tell them...I hid myself. That was pretty tricky at times. When I became an adult I would explain to my partner what had happened and I had no problems. Has anyone told you that you can have plastic surgery to rebuild? If you have any way of getting funds ...it may make you feel better. Peace..Angel

JasminaGermany
Posts: 1
Joined: Jul 2019

Hi dbalexis04,

it's been many years since you have been on this site...but I am hoping to find someone for my mother to connect with. She is about to have a full vulvectomy at a hospital in Germany and could use the support of someone who has been through this. Her surgery is set for August 6th (2019). If you get this message it would be amazing to talk with you!

thanks!

Jasmina

Cissy911
Posts: 1
Joined: Sep 2019

Hi. I’m new here. I am scheduled for a partial vulvectomy and laser surgery tomorrow morning. I am a little scared. I hope your mom is doing good since her surgery. I have not found anyone I know that is going through what I am so I happy I found this site so I know there are people out there. I have VIN3 and dysphasia inside my vagina. I discovered skin change in January of this year and couldn’t get into my gyno until June. She didn’t know what it was so she said we needed to remove it and send it to the lab. I had a wide local excision done. My pathology report came back not clear so I was referred to a Gynecology Oncologist. He did 3 biopsies and that’s when I received the news that I need to have a partial vulvectomy and laser surgery inside to kill the dysplasia. My pathology report came back negative for HPV virus so it’s kind of shocking that this is happening to me. I’m sending positive thoughts to your mom and pray she is recovering well. 

Rebel26
Posts: 2
Joined: Feb 2018

Hi Cissy, I hope your suregery went well since it sounds like  you nad it done around a week ago.  I remember when I was dianosed with vluva/vaginal cancer around a year and a half ago, I freaked out having never heard of such a thing! How he ehck can someone get skin cancer ina n area most of us don't expose for housr to the sun!  Of all the uncomfortable places to get skin cancer.  And, it looks like by the few posts that it seems to still be rare or secretive or just where he heck isn the info?!!?  I had surery and just went for my 4th 3 month check.  I thought I had a very succesful surery but I have only had 1 check so far that hasn't needed a follow up biopsy to remove a spot which so far, have turned out to be precancerious.  I didn't have HPV, smoked a lot when younger, not highly sexually active, but have suffered terrible menopause for over a decade.  My surgeon still feels very positive and I have faith in him.  It is a battle that we need to go through.  Not much choice in the matter.  But, maybe some of us can get on here more often to just listen and respond as we can since so much of the fear I felt was based on not knowing really what to do or who to discuss this wth!  I DO hope you are recovering and healing and when you feel up to it, let us know!  Thinking of you and everyone else dealing with this crappy disease!

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2699
Joined: Mar 2013

Jasmina, you are right, it is so terribly quiet here, and I wish I knew where I could send women (and their families looking) for answers.  I am a visitor from the Uterine chat board and check in on the other gyn cancer threads.  Your mom is in my prayers and I hope someone can share their experience with you.  

Jupiter1's picture
Jupiter1
Posts: 1
Joined: Jan 2020

In April, 2019 I had a vulvectomy.  My Labia and clitoris were removed, as well as, 18 lymph nodes.  I had radiation and chemotherapy.  I felt great ( even after gaining 42 pounds!).  I've had 2 PT scans since.  The first one in November found nothing, however, thie one I had last week was not so much.  There is a lump on my pubic area, I can feel it.  My physician is not too concerned but wants a biopsy to rule out...

I'm terrified.  I don't know what to ask from anyone here.  Maybe emotional support!

Thanks, 

sharon

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2699
Joined: Mar 2013

Jupiter, I would be terrified too! When are you scheduled for the biopsy?  The waiting is very hard.  Please let us know when and how it goes.

NoTime

Rmn0567
Posts: 4
Joined: Mar 2019

My prayers are going out for you. The waiting is the hardest part. 

 

 

 

 

 

 

 

 

 

 

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