Partial Vulvectomy

Hello Marstew.    I just

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. 

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. 

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. 

Laura2051 said:

Vulvar cancer survivor

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.

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?

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.  

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.