1. < Gynecologic Cancers
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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.

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andwho | @andwho | Apr 26 3:27pm
In reply to @bobette1 "I don't have anything over the counter but I bet you could use Motrin for swelling..." + (show)
Profile picture for bobette1 @bobette1

I don't have anything over the counter but I bet you could use Motrin for swelling and there must be some sort of steroid cream OTC. maybe ask a pharmacist. Sorry I can't be of more help.

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How often do you have flare ups & use clobetasal ?

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1 reply
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leahchawkins | @leahchawkins | Apr 25 6:41am
In reply to @naturegirl5 "@leahchawkins I somehow missed your post of last week that you have an appointment coming up..." + (show)
Profile picture for Helen, Volunteer Mentor @naturegirl5

@leahchawkins I somehow missed your post of last week that you have an appointment coming up tomorrow in radiation oncology. I'll be thinking about you tomorrow. I am hoping that the appointment helps you figure out the approach that will work the best for you in your life. I realize these are very big decisions.

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Thanks! I’m nervous … as we all are. I’m scheduled for a breast MRI on Sunday night due to a hot spot showing up on my PET scan, so there’s that.😊 I appreciate you reaching out.

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1 reply
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Mentor
Helen, Volunteer Mentor | @naturegirl5 | Apr 24 5:43pm
In reply to @leahchawkins "I have squamous cell vaginal cancer due to HPV. In 1995 I had a total abdominal..." + (show)
Profile picture for leahchawkins @leahchawkins

I have squamous cell vaginal cancer due to HPV. In 1995 I had a total abdominal hysterectomy due to HPV…. And it’s back.
Surgery is not an option as the tumor abuts my urethra and there is not enough tissue to obtain clear margins. Don’t want a permanent urostomy bag, so I have an appointment April 25 with radiation oncology to discuss radiation and chemotherapy and chemoradiation. Possibly 6 weeks….

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@leahchawkins I somehow missed your post of last week that you have an appointment coming up tomorrow in radiation oncology. I'll be thinking about you tomorrow. I am hoping that the appointment helps you figure out the approach that will work the best for you in your life. I realize these are very big decisions.

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1 reply
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Moderator
Colleen Young, Connect Director | @colleenyoung | Apr 24 9:32am
In reply to @leahchawkins "I have squamous cell vaginal cancer due to HPV. In 1995 I had a total abdominal..." + (show)
Profile picture for leahchawkins @leahchawkins

I have squamous cell vaginal cancer due to HPV. In 1995 I had a total abdominal hysterectomy due to HPV…. And it’s back.
Surgery is not an option as the tumor abuts my urethra and there is not enough tissue to obtain clear margins. Don’t want a permanent urostomy bag, so I have an appointment April 25 with radiation oncology to discuss radiation and chemotherapy and chemoradiation. Possibly 6 weeks….

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@leahchawkins thinking of you as you prepare for your appointment tomorrow. I'll be interested to hear what treatment options will be available for you.

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Profile picture for Colleen Young, Connect Director
Moderator
Colleen Young, Connect Director | @colleenyoung | Apr 23 4:06pm
In reply to @needhelp25 "My 88 year old mother will start radiation in one week and have 15 treatments over..." + (show)
Profile picture for needhelp25 @needhelp25

My 88 year old mother will start radiation in one week and have 15 treatments over 3 weeks. She is legally blind, almost deaf even with hearing aids, and is experiencing cognitive decline over the last couple of months. I am trying to get ready to treat her side affects. Will she have side affects immediately? Aquaphor and sitz baths were suggested at the radiology consultation. Can she use lidocaine on the treated area? Are there any suggestions for the sitz bath ingredients? Any other warnings or suggestions?

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@needhelp25, you're asking great questions. You might also be interested in this related discussion:

- Vulvar cancer radiation: Helpful tricks & tips to manage pain? https://connect.mayoclinic.org/discussion/vulvar-squamous-cell-cancer/

See other radiation related discussions here: https://connect.mayoclinic.org/group/gynecologic-cancer/?search=radiation&index=discussions

Have radiation treatments begun? How is your mom doing?

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Profile picture for leahchawkins
leahchawkins | @leahchawkins | Apr 15 3:31pm

I have squamous cell vaginal cancer due to HPV. In 1995 I had a total abdominal hysterectomy due to HPV…. And it’s back.
Surgery is not an option as the tumor abuts my urethra and there is not enough tissue to obtain clear margins. Don’t want a permanent urostomy bag, so I have an appointment April 25 with radiation oncology to discuss radiation and chemotherapy and chemoradiation. Possibly 6 weeks….

REPLY
2 replies
Profile picture for needhelp25
needhelp25 | @needhelp25 | Apr 14 1:31pm

My 88 year old mother will start radiation in one week and have 15 treatments over 3 weeks. She is legally blind, almost deaf even with hearing aids, and is experiencing cognitive decline over the last couple of months. I am trying to get ready to treat her side affects. Will she have side affects immediately? Aquaphor and sitz baths were suggested at the radiology consultation. Can she use lidocaine on the treated area? Are there any suggestions for the sitz bath ingredients? Any other warnings or suggestions?

REPLY
1 reply
Profile picture for andwho
andwho | @andwho | Apr 4 3:21pm
In reply to @bobette1 "I don't have anything over the counter but I bet you could use Motrin for swelling..." + (show)
Profile picture for bobette1 @bobette1

I don't have anything over the counter but I bet you could use Motrin for swelling and there must be some sort of steroid cream OTC. maybe ask a pharmacist. Sorry I can't be of more help.

Jump to this post

Thank you!

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susanpagets | @susanpagets | Apr 4 11:12am
In reply to @tally9004 "Hi, I am new to the site. I want to get some thoughts on how others..." + (show)
Profile picture for tally9004 @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 have Paget's disease, Vulvar cancer. I had a biopsy and was diagnosed, then sent to a Gynecologist/Oncologist. She did the surgery. Three years later, it is back. This time, we are using Imiquimod, which is a cream/cancer treatment. This was helpful. I go back in 3 months
Please let me know if I can help in any way. God bless you!

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Profile picture for susanpagets
susanpagets | @susanpagets | Apr 4 11:01am
In reply to @ali1974 "I would like to add that I’m 46yrs old, married and have 2 daughters. I don’t..." + (show)
Profile picture for ali1974 @ali1974

I would like to add that I’m 46yrs old, married and have 2 daughters. I don’t understand why I may have this because I have never has a STD or anything. I’m so perplexed by it all.
Thanks for listening!
Alice

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You don't have to have an STD to get vulva cancer. Mine is called Paget's disease,which is cancer. I have had one surgery and most recently using Imiquimod, which is a cream that is a topical chemo. I have had some good results with that. God bless you.

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