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Partial Vulvectomy

marstew
Posts: 3
Joined: Jan 2018

I am 48 recently had a biopsy done in December which came back positive for squamous cell carcinoma in situ.  I had the biopsy done after experiencing pain during sex for 6-12months (clearly it wasn't that painful at first--but recently had become too painful for sex).  My gyno was surprised by the pathology b/c I had not ever tested positive for HPV and didn't have a lot of itching. At any rate, I met with the oncologist/gyno yesterday and have scheduled a partial vulvectomy in a week.  I am nervous by some of the posts--I have a very demanding job and I'm worried about how long I should expect to be out of commission (my doctor suggested taking 2 weeks off which sounds like A LOT).  I'm also worried about how often this type of VIN3 (I think that is what I have) turns into more invasive cancer?  My tumor (the dr used that word--to me it seems more like a lesion or affected area is about 3 cm on only one side of my labia.  Are there statistics for how often partial vulvectomies result in a positive diagnosis for vulvar cancer?  

 

Thanks in advance,

 

JustPeachyMawMaw's picture
JustPeachyMawMaw
Posts: 5
Joined: Dec 2017

Hello Marstew.  :)  I just wanted to say that I am in a similar situation.. age 57 post menopausal, but with Vulvar Cancer Basal Cell type.    So I don't have any VIN but I have read a lot about Vulvar cancer during the last month prior to my biopsy results, as I was pretty sure I had some type of cancer.  I meet with my oncologist in about 2 weeks and I expect that I will be having a partial vulvectomy as well.

From what I read I believe that VIN can progress into true cancer, so they treat it that way from the get-go.   I think that once you have your vulvaectomy that then they'll be able to tell the size, the staging and if anything else need to be done.  But I am not certain.

I hope someone with more knowledge comes along and can help answer your questions.  I hope you keep posting and let us all know how you are doing.  I will too.  This is scary territory. 

marstew
Posts: 3
Joined: Jan 2018

Yes! There is another community discussion board that is uk based (Macmillian's Online Community) that might give us more help.  I go in for my pre-op next monday and I will let you know what I find out.  I have not been able to find a single person I know who has this--maybe theyre out there but they just don't talk about it--which seems silly b/c we certainly talk about cervix and ovarian and prostate cancer?  In my own mind I am trying to catagorize/rationalize this as basically skin cancer in an unusual location.  

Do you know what stage your cancer is?  Interesting that you have basal as I thought that was more likily not to turn into invasive cancer. What were your symptoms? 

 

 

 

JustPeachyMawMaw's picture
JustPeachyMawMaw
Posts: 5
Joined: Dec 2017

I think its difficult to find people talking about it because Vulvar cancer is so rare.. I've read that its like 4-6% of all the female cancers.  Basal is rarer still.. being only 1% OF that 4-6%!    Due to it not being in a sun exposed place (unless you use tanning beds or sunbathe in the nude, both of which I do not do), but I've read that while it doesn't seem to spread into other places often, it has a high reocurrance rate and so you have to go back and keep getting it cut off. 

I do know of one person that had vulvar cancer but I'm not sure what type.  She was a friend/co-worker and she did pass away from the cancer after having a radical vulvarectomy and chemo, I don't know the details but I imagine it had spread and was a higher stage before she sought treatment.

I don't know my stage yet but I'm assuming if its only what I can SEE, then its stage 1.  

At first I thought I had a pimple, cyst or ingrown hair or something I could treat myself and tried to do so with hot compresses etc.   I have a lump that burns, itches and tingles.   When nothing I did made the symptoms go away OR "drain" it.. then I went to my gyno but it was so inflammed that I had to use steriod cream for a month before he could do the biopsy.  So I've had it for about 4 to 5 months which I still think is catching it early. 

EJG
Posts: 6
Joined: Feb 2018

I have been there. Please find a dr. that will remove it ASAP. The longer you wait the deeper the roots go. It took me 2 years to find a doctor that would cut it out after it became so painful I couldn't enjoy anything without numbing it.

 

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2597
Joined: Mar 2013

JustPeachy, take a breath and don't read 'statistics'.  As one of my favorite warriors used to say, "You are a statistic of one!"  I am a visitor from the Uterine board but check in on the other gyn cancers to let them know they are not alone.  

I am happy you both found this board and each other.  Please let us know how you are doing.

marstew
Posts: 3
Joined: Jan 2018

I'm going in tomorrow for my partial vulvectomy...will let you know how it goes. Fingers crossed. 

 

Laura2051
Posts: 34
Joined: Aug 2016

Marstew and Just Peachy, I am a vulvar cancer survivor. This summer will make 2 years surviving stage 4 squamous cell carcinoma ( not VIN). I was 53 when this happened and stupidly had ignored the pain, swelling, etc.. thinking I was just a menopausal woman! It was the blood that finally made me go see a doctor. I thought the blood was coming from my urine but it was coming from my clitoris. I had a radical vulvectomy and a bilateral lymphectomy, as the cancer had spread to the lymph nodes and on one side into the skin and blood vessels. After surgery I was barely healed when they wanted to start chemo and radiation. My radiology Oncologist found another cancerous lymph node higher up so they just radiated the heck out of it (32 times). Anyways I would be glad to help you in any way I can. Attitude is so important-Believe that you will be healed. If you believe in God then pray. Cancer is not God's fault but He will see you through it. Cancer happens. Seems like more and more. Maybe someday you will be the one helping someone else get through this. I have been through every level of grieving possible and am focusing on healing, good thoughts, peace this year. I would love to be able to help you. Keep me posted on how you are doing and I will keep checking back in. Every day above ground is a good day. As the mind thinks the body becomes. Think good healing thoughts and be good to yourself.

EJG
Posts: 6
Joined: Feb 2018

I just read your story and it gives me hope. I had a partial radical vulvectomy and biospy of both sides groin lynoh nodes. They came back negative. Now one year later I have a lump in the left groin where the biospy was done and need to have surgery to remove it and my lymph nodes on the left side. I will then need radiation treatments. How did that affect you?

 

EJG
Posts: 6
Joined: Feb 2018

This is my first time posting. At age 65 after suffering with lychen sclerosis for several years and using clobetasol as the main treatment, I developed a cyst on my left vulva that would not heal. I had 3 or 4 biopsies over a 2 year period that all came back negative. It was very painful. Anything that touched it caused pain and it was unbearable to urinate unless I numbed it first with Burn Jel which contains lidocaine. Finally a doctor decided to remove the cyst and the biopsy came back positive for squamous cell carcinoma. I then had to have another surgery and the dr. in Pittsburgh did a partial radical vulvectomy on the left side. Three mo. later it starting coming back so I had a bigger section removed plus biopsies of lynph nodes on both sides. Everything came back negative. However, it was still too painful and tender to have intercouse. I found that the clobetasol always made the lychen sclerosis  worse and last year asked to use premarin cream which does help.

I had a year before my next bout which is just beginning. I found a hard lump in my left groin where the lymph nodes were removed and CT and PET scan confirm a large 4 in. mass there. I am scheduled for surgery next week to remove as much as possible and once the incision is healed will have 5 weeks of radiation 5 days a week. I may also get small doses of chemo. Has anyone else gone thru this?? I would love to hear from you. 

 

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2597
Joined: Mar 2013

EJG, I am so sorry to hear what you have gone through and what you are facing.  As JustPeachyMawMaw said, vulvar cancer is so rare, and it might be hard to find a place where others talk about this.  I am just a visitor from the Uterine board (I like to check in on my fellow gyn cancer sisters) and I hope you ladies continue to return to help eachother, and those who may come here in the future.

JanuaryDaybreak's picture
JanuaryDaybreak
Posts: 20
Joined: Nov 2016

Big hugs to my cancer sisters.  I had my partial vulvectomy in 2016, and I know how concerning it is.  Vulvar/vulval cancer is among the least common gynecological cancers.  Please feel free to reach out to me if you need reassurance or just someone to listen.  

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2597
Joined: Mar 2013

Miss January!  So good to hear from you.  I hope you are doing ok.  

FMB18
Posts: 1
Joined: Oct 2018

Hello to all and sorry to meet under these circumstances. I was just diagnosed with VIN3 squamous cell of the vulva. I am meeting the oncologist next week for the first time. My GYN said I need surgery to remove. Also my pap revealed severe dysplasia. I am waiting for a copy of my lab results.

I am extremely nervous and not sure what to expect. I assume the surgeon will explain the surgery but not sure what to expect afterwards.

Are there specific questions I should ask the surgeon? I'd appreciate hearing from someone and their experiences.

Best of luck to everyone.

Daisy3430
Posts: 1
Joined: May 2019

Just had this done May 14 for 2 lesions.  One I first noticed in February between vagina and rectum, the other one the OB/GYN caught.  Waiting on biopsy of what was removed to see if cancer.  Dr. Said it was about 4MM deep.  I'm healing ok, the swelling has gone down, but now my vaginal area feels swollen, like its coming out, even tho it's not. Anyone else have this sensation?  I've had other surgeries and am thinking this is just how incisions feel when they're healing.

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