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.

bobette1 | @bobette1 | Oct 30, 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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Welcome to the club. I too had vulvar cancer. I was able to have a biopsy done in a matter of days. I am so sorry they can't do it without surgery. One thing that I didn't realize until later while I waited for surgery, is that I should have stayed away from sugar. I craved it and ate it and my tumor was huge on the outside by the time I had my surgery. Wishing u the best of luck. How are u feeling otherwise? It is still fresh in my mind ...I had surgery last November and then did 6 weeks of chemo and radiation that I just finished in March. I'm beginning to feel like myself again. Please keep in touch and let us know how things are going.
Bobbi

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2 replies
bobette1 | @bobette1 | Oct 30, 2023
In reply to @wheaton "Hi, I am new to this site and trying to find other women who have had..." + (show)
@wheaton

Hi,
I am new to this site and trying to find other women who have had or have vulvar cancer. I realize it is rare and there is not much information on it, but I am currently still having long term effects from radiation and was wondering if anyone would be willing share info. Thanks, Trish

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I finished radiation in March and still feeling effects from it. Someone mentioned diarrhea that they can't control. I don't have that problem but because of my incision is so close to my anus that I have to take miralax every couple days because every time I poop I bleed just slightly nothing too serious. And also I'm having trouble with my bladder like I have to wear a thin pad every day because a little bit of urine sneaks out. I am going to start pelvic physical therapy in January and hoping that helps.

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tally9004 | @tally9004 | Oct 30, 2023
In reply to @wheaton "Hi Tally, Welcome! I was diagnosed with vulvar cancer in April 2018. The first thing the..." + (show)
@wheaton

Hi Tally,
Welcome! I was diagnosed with vulvar cancer in April 2018. The first thing the gynecologist did after the exam was a biopsy. She then sent me to an oncologist/gynecologist. After meeting with the specialist we decided on a treatment plan. It may be helpful to see if you have a oncologist/gyn in your area. The best of luck. Let us know how you’re doing.

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Hi, I am scheduled for a biopsy this Thursday. I will keep you posted. I am glad that this group is here because this type of cancer is in such a private and personal part of the body and the comments steady my emotions.

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1 reply
tally9004 | @tally9004 | Oct 31, 2023
In reply to @bobette1 "Welcome to the club. I too had vulvar cancer. I was able to have a biopsy..." + (show)
@bobette1

Welcome to the club. I too had vulvar cancer. I was able to have a biopsy done in a matter of days. I am so sorry they can't do it without surgery. One thing that I didn't realize until later while I waited for surgery, is that I should have stayed away from sugar. I craved it and ate it and my tumor was huge on the outside by the time I had my surgery. Wishing u the best of luck. How are u feeling otherwise? It is still fresh in my mind ...I had surgery last November and then did 6 weeks of chemo and radiation that I just finished in March. I'm beginning to feel like myself again. Please keep in touch and let us know how things are going.
Bobbi

Jump to this post

I go from feeling calm and resigned to total panic. Not knowing is pretty nerve wracking because my life could change completely once I get the results in. Thank you for sharing. I get home from everyone who has come out on the other side of their diagnosis.

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1 reply
Mentor
Helen, Volunteer Mentor | @naturegirl5 | Nov 1, 2023
In reply to @tally9004 "I go from feeling calm and resigned to total panic. Not knowing is pretty nerve wracking..." + (show)
@tally9004

I go from feeling calm and resigned to total panic. Not knowing is pretty nerve wracking because my life could change completely once I get the results in. Thank you for sharing. I get home from everyone who has come out on the other side of their diagnosis.

Jump to this post

@tally9004 Welcome to our support group. The emotions of calm to panic sound about right to me. It's a shock to get this information and nerve wracking while you await the biopsy. When I heard the word "cancer", in my case uterine cancer, my whole consciousness shifted. In fact, I made a wrong turn on a road I'd driven many times on my way home from the gynecologist's office. I was in an unfamiliar neighborhood and once I "woke up" I easily corrected my route but it was an unsettling experience for me. I knew why it happened but I felt like I was existing in another world as I absorbed the information.

What time is your biopsy tomorrow?

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2 replies
tally9004 | @tally9004 | Nov 1, 2023
In reply to @naturegirl5 "@tally9004 Welcome to our support group. The emotions of calm to panic sound about right to..." + (show)
@naturegirl5

@tally9004 Welcome to our support group. The emotions of calm to panic sound about right to me. It's a shock to get this information and nerve wracking while you await the biopsy. When I heard the word "cancer", in my case uterine cancer, my whole consciousness shifted. In fact, I made a wrong turn on a road I'd driven many times on my way home from the gynecologist's office. I was in an unfamiliar neighborhood and once I "woke up" I easily corrected my route but it was an unsettling experience for me. I knew why it happened but I felt like I was existing in another world as I absorbed the information.

What time is your biopsy tomorrow?

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Hi, It is the case where I will get a call from the surgery center after 3 pm today to tell me when to come in. I think the fact that my doctor wanted to do it in as a minor surgery with drugs like in a colonoscopy is not real comforting. The not knowing for sure until the results come in is awful. I hope it is early in morning since I can't eat after midnight. I am a get up at 5 am and have breakfast at 5:30 kind of person.

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2 replies
Mentor
Helen, Volunteer Mentor | @naturegirl5 | Nov 1, 2023
In reply to @tally9004 "Hi, It is the case where I will get a call from the surgery center after..." + (show)
@tally9004

Hi, It is the case where I will get a call from the surgery center after 3 pm today to tell me when to come in. I think the fact that my doctor wanted to do it in as a minor surgery with drugs like in a colonoscopy is not real comforting. The not knowing for sure until the results come in is awful. I hope it is early in morning since I can't eat after midnight. I am a get up at 5 am and have breakfast at 5:30 kind of person.

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@tally9004 Oh, like you I like to get these procedures done early in the morning. I’m not an early morning person anymore but for a procedure I’ll do it. I’m thinking that like a colonoscopy you will be talking with your doctor ahead of time and afterwards. So you can ask when you will know about the results. Some pathologists turn these results around really quickly like in 24-48 hours. Also, the surgeon might give you some preliminary impressions before the tissue is analyzed in pathology.

Will you let me know how the procedure goes tomorrow? I’m wishing you a compassionate medical team that listens to you and provides you with excellent care.

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Moderator
Colleen Young, Connect Director | @colleenyoung | Nov 3, 2023
In reply to @tally9004 "Hi, It is the case where I will get a call from the surgery center after..." + (show)
@tally9004

Hi, It is the case where I will get a call from the surgery center after 3 pm today to tell me when to come in. I think the fact that my doctor wanted to do it in as a minor surgery with drugs like in a colonoscopy is not real comforting. The not knowing for sure until the results come in is awful. I hope it is early in morning since I can't eat after midnight. I am a get up at 5 am and have breakfast at 5:30 kind of person.

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@tally9004, how did your biopsy appointment go? How are you doing?

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1 reply
tally9004 | @tally9004 | Nov 3, 2023
In reply to @colleenyoung "@tally9004, how did your biopsy appointment go? How are you doing?" + (show)
@colleenyoung

@tally9004, how did your biopsy appointment go? How are you doing?

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Thank you for asking. I am doing as well as expected (lousy area to get a biopsy!). It has been a little over 24 hours and I feel like eating again. My doctor told me the biopsy results should be available on Monday. Dealing with the biopsy site keeps me from thinking too much about why I had the biopsy.

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juju67 | @juju67 | Nov 4, 2023

In my case, the pain from the biopsies were the worst for the first two days. After that, they were painful, but tolerable. Laying down helped me. I spent most of my time laying on the couch or the bed. Hope you are feeling better today.

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