1. < Gynecologic Cancers

Vulvar Cancer: Anyone else?

Posted by ali1974 @ali1974, Nov 12, 2020

Hello:
I have posted on other discussion group about my struggle with my health, previous cancer stories and concerns for my genetic history. I can’t seem to get a break. I just had a biopsy today to rule out vulvar cancer. I honestly didn’t even know there was such a thing. Has anyone been diagnosed with this and is it more common than what I have been reading?
I am BRCA2 and MSH6 positive. 2 time breast cancer and ovarian cancer survivor I have lived a drug and alcohol free life it just doesn’t end!

Alice

Interested in more discussions like this? Go to the Gynecologic Cancers Support Group.

scm | @scm | Dec 25, 2023
In reply to @caddo "I had a modified radical vulvectomy on October 25 for squamous cell cancer and will have..." + (show)
@caddo

I had a modified radical vulvectomy on October 25 for squamous cell cancer and will have radiation 5 days a week for 6 weeks. The margins were clear but too narrow and one lymph node was positive and had metastasized so it is Stage 3 so I will have radiation on the abdominal area also. Hopefully others whose cancer is similar will share their radiation experience as I feel that will be helpful to me..

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Are you having immunotherapy?

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1 reply
Mentor
Helen, Volunteer Mentor | @naturegirl5 | Dec 25, 2023

@scm I know that you will be in the care of a caring, compassionate, and collaborative medical team. They will answer all your questions including the fears you have about the chances of a recurrence. They will explain the lymph nodes to you. Yes, you are terrified. I was too but I also had a certain peace that came with knowing that I was surrounded by a team of people who cared for me as a whole person. I’m grateful that you are going to Mayo.

May the peace and light of the holidays surround you. Winter Solstice was just a few days ago and we are entering into brighter days.

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caddo | @caddo | Dec 26, 2023
In reply to @scm "Are you having immunotherapy?" + (show)
@scm

Are you having immunotherapy?

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No. Only radiation.

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ima1survivor | @ima1survivor | Dec 26, 2023
In reply to @scm "Honestly, I am terrified! Praying that lymph nodes are clear as that gives me a chance..." + (show)
@scm

Honestly, I am terrified! Praying that lymph nodes are clear as that gives me a chance of recovery. I just keep reading that it comes back even after a radical vulvectomy and that there seems to be problems after a vulvectomy with infection and healing but feel that Mayo is my best chance

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I, too, had squamous cell of the vulva with surgeries spanning 10 years..last one being 25 years ago. Please look for my suggestions in Paget’s disease forum? I have no idea how to transfer all of that info to this group, but the recovery is so similar. I was hoping administrator could copy info to this page. I never had radiation or chemo, but there were less than 3 patients in the US, and my prognosis was not good back then.

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scm | @scm | Dec 26, 2023
In reply to @tally9004 "Hi, I am new to the site. I want to get some thoughts on how others..." + (show)
@tally9004

Hi,

I am new to the site. I want to get some thoughts on how others have handled vulvar biopsies. I had an appointment with a nurse practitioner in Sept 2023 for a painful area on my vulva. She said she could not do a biopsy but I should schedule an appointment with the doctor to have a biopsy done. I met with the doctor on 10/24 and instead of a biopsy right then, she wanted to do a surgery which would have been another month to remove the whole inflamed area for a biopsy. I initially said yes, but I now have an appt. this week to do the biopsy. I just can't wait another month to determine if I have cancer. I would like to know the process that others have gone through. Did you get a biopsy first and then see an oncologist or cancer team? I don't want to wait to have surgery, find out it is cancer and then have more surgery later down the road. I have always heard that it is better to have a gyno-oncologist do these types of surgery. I am just pretty confused on the best path to take. Would love to hear thoughts on this.

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I also have vulvar cancer. A week before Thanksgiving I saw my ob/gyn who did a biopsy and told me it was melanoma in situ, which means it was superficial. I immediately called Mayo and saw the team on Dec. 6th. They removed the tumor and some margins and biopsy showed .5 deep and invasive melanoma. I am having a radical vulvectomy and sentinel node biopsy on Jan 2nd-one week from today! They also did a pet scan that day and it showed it had not spread to any other organs. The surgeon said that the pet scan is very good at showing melanoma in other organs but not great at picking up microscopic melanoma in the lymph nodes. If clear lymph nodes, I will have immunotherapy. If in the lymph nodes, chemo, radiation and immunotherapy. Never heard of this cancer before but have confidence in my team at Mayo.

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Moderator
Colleen Young, Connect Director | @colleenyoung | Dec 30, 2023
In reply to @texaslea "Hello like you had no clue about vulvar cancer But for year I'd get a patch..." + (show)
@texaslea

Hello like you had no clue about vulvar cancer
But for year I'd get a patch that would itch dr always said just yeast infection so I treated it and put Tea tree oil on it it go away for a while then come back this been going on for year the do my pap normal but I do have history of cervical cancer for mid 90 it's been 27 years I just word as there was to lesson and he only biopsy 1 of them I've seen a lot of post women not.sure where come from just head's up you can be born with a certain gene smoking sex have a sore that you may of itched to much
3 years ago mine wasn't there I had angio on heart that same night went to er I thought had a uti same symptoms even was sent to urologist kept showing sign of uti but no bacteria so please if anyone has this happen get to gyno I don't know what's a head for me but thankfully I only have few days to find out oh think that mine may be coming from thyroid goiter but will see
Prayers to all

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Hi @texaslea, you mentioned when you posted that you only had a few days to wait to find out what will be ahead for you. Have you met with your doctor to learn more about your diagnosis? What is the treatment plan? How are you doing?

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blonde69 | @blonde69 | Dec 31, 2023

Hi Talley,

God bless you that you survived your cancer diagnosis! At 65, About 5 years ago, I had a biopsy on my vulva...it was pre-cancer. Doctor did surgery to remove the affected area. From what I have read, vulva cancer is rare and usually affects women over 65. Two weeks ago, my OBGYN performed two biopsies on my vulva. There were two large lumps. I get the results on Thursday, 1/4. I'm extremely nervous because no doctor (I had CT scan, pelvic exams,, xrays....you name it, I had it done). The pelvic pain is so severe, I can't walk. I have an MRI scheduled for January 20th specifically for my pelvic area. I have always been healthy through my younger years up to my 50's. As I retired (I'm coming up on 70) All this health issues came up. As always, your OBGYN should be able to help you. I hope all works well for you and you are in my prayers. Keep in touch as I would like to know how you are doint.

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2 replies
annie7837 | @annie7837 | Dec 31, 2023
In reply to @blonde69 "Hi Talley, God bless you that you survived your cancer diagnosis! At 65, About 5 years..." + (show)
@blonde69

Hi Talley,

God bless you that you survived your cancer diagnosis! At 65, About 5 years ago, I had a biopsy on my vulva...it was pre-cancer. Doctor did surgery to remove the affected area. From what I have read, vulva cancer is rare and usually affects women over 65. Two weeks ago, my OBGYN performed two biopsies on my vulva. There were two large lumps. I get the results on Thursday, 1/4. I'm extremely nervous because no doctor (I had CT scan, pelvic exams,, xrays....you name it, I had it done). The pelvic pain is so severe, I can't walk. I have an MRI scheduled for January 20th specifically for my pelvic area. I have always been healthy through my younger years up to my 50's. As I retired (I'm coming up on 70) All this health issues came up. As always, your OBGYN should be able to help you. I hope all works well for you and you are in my prayers. Keep in touch as I would like to know how you are doint.

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Keeping all of you in my prayers. I am 44 and was diagnosed last year with vulvar cancer. I had a partial radical vulvectomy, chemo, radiation (twice) as it traveled into the right groin lymph nodes. I’ve had a PET scan done and everything looks great except for affects from the radiation (cystitis). I’m trying to keep positive although this is a very rare cancer and it is very aggressive and likes to come back. So myself and doctors are monitoring it very closely.

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1 reply
lrcg | @lrcg | Dec 31, 2023

Hey All
I have Pagets of the Vulva and have had a partial vulvectomy one year ago
Im pretty sure its back in another area. Is this different than what you have? Im trying to find a Dr who knows anything about Pagets.
Thanks and my prayers to all. We must be brave and positive
LRCG

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1 reply
bobette1 | @bobette1 | Jan 1 9:26am
In reply to @annie7837 "Keeping all of you in my prayers. I am 44 and was diagnosed last year with..." + (show)
@annie7837

Keeping all of you in my prayers. I am 44 and was diagnosed last year with vulvar cancer. I had a partial radical vulvectomy, chemo, radiation (twice) as it traveled into the right groin lymph nodes. I’ve had a PET scan done and everything looks great except for affects from the radiation (cystitis). I’m trying to keep positive although this is a very rare cancer and it is very aggressive and likes to come back. So myself and doctors are monitoring it very closely.

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Can I ask you how often do u get scans? I finished chemo & radiation in March for stage 3 Vulvar cancer and had a cat scan in June but nothing since.

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