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.

@caddo From what I understand vulvar cancer is not all that common. Yet, there is a posting almost every day in this Discussion including yourself. It’s a very personal diagnosis as you said. I’m a cancer survivor (endometrial cancer) and while that cancer occurs more often I find it very personal also.

I’m glad you found us here at Mayo Clinic Connect and that you are connecting and being supported by this group. Nope, not every 85-year-old person is the same. My father lived to 93-years old and at your age he was still walking 9 holes at the golf course. It wasn’t until he was 90 years old that he reluctantly decided it was time to use a golf cart so he could continue to play.

As I said above, I know you will get support here. When do you next see the radiation oncologist?

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Profile picture for Colleen Young, Connect Director @colleenyoung

@caddo, here are a number of discussions about radiation and vulvar cancer and pelvic radation: https://connect.mayoclinic.org/group/gynecologic-cancer/?search=radiation&index=discussions

Here's a general discussion you may wish to join:
- What Kind of Radiation Did You Get for Your Gynecological Cancer?
https://connect.mayoclinic.org/discussion/types-of-radiation-treatments-for-gynecological-cancers/

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Thank you so much. It is so hard to know what to do. I will be 86 years old but have always been very active, doing Pilates, etc., up to the time the cancer was diagnosed. The radiologist started out saying that he realizes that all 85 year old, are not the same physically but……. which makes it difficult to make a decision on what to do. Since there aren’t very many women who have gone through this it is not so easy to find personal journeys.

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Profile picture for caddo @caddo

I will have radiation therapy. I checked out the group for that but couldn’t find any posts. Has anyone had experience with it
I also have an infection, which is being treated with oral antibiotics.

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@caddo, here are a number of discussions about radiation and vulvar cancer and pelvic radation: https://connect.mayoclinic.org/group/gynecologic-cancer/?search=radiation&index=discussions

Here's a general discussion you may wish to join:
- What Kind of Radiation Did You Get for Your Gynecological Cancer?
https://connect.mayoclinic.org/discussion/types-of-radiation-treatments-for-gynecological-cancers/

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Profile picture for debramcrae @debramcrae

Hi I had a cyst removed from my right side of vulver
I had this for about 5 years and thought nothing of it I went to a gynecologist to get a IUD removed and he saw it and said he would book me in for surgery remove the cyst and replace IUD waited 24 hours and found out that was stage 3 going on stage 4 cancer I panicked, I went back to gynecologist 2 weeks later removed sutures and was told he was confident got all the cancer when he removed lump that I thought was a cyst 6 months later tested site again no cancer cells found them back 6 months later all clear.

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@debramcrae, there seems to have been a small stroke of luck involved in your story, although I bet it didn't feel like that at the time. Do you continue to be monitored every 6 months or yearly? What follow-up testing do you have, if any?

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Profile picture for caddo @caddo

I will have radiation therapy. I checked out the group for that but couldn’t find any posts. Has anyone had experience with it
I also have an infection, which is being treated with oral antibiotics.

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Hi, I had radiation therapy after chemo for vulvar cancer. You might want to check with your doctors about starting radiation treatment with an infection. They might want to wait until you have finished with the antibiotics and no more infection. Believe me, the slight delay will be worth it! Radiation can affect your white blood counts, so better safe than sorry. A few pieces of advise that I wish I had been given -
you will be tired so listen to your body,
if you can, have someone drive you to treatment, even if you think you can do it
Before you start, go out and buy “boy short” underwear in 1 size larger, you’ll be much more comfortable
Ask your radiologist about cream to use, in case you develop burns (like a sunburn)
I am more than happy to answer questions, if you have them. Let us know what the doctors say. You’ve got this!

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Profile picture for juju67 @juju67

Hello Tally9004. I was diagnosed with Paget’s of the vulva in August 2023. I would absolutely see a gynecologist before considering surgery. A biopsy is necessary as well to determine if the growth you are seeing is cancer and what type it might be.
If you do a search here for Paget’s disease of the vulva, you will see others that have posted about their journey. Yours may not be Paget’s, but there is good information there as well.
Good luck to you.

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Hi I had a cyst removed from my right side of vulver
I had this for about 5 years and thought nothing of it I went to a gynecologist to get a IUD removed and he saw it and said he would book me in for surgery remove the cyst and replace IUD waited 24 hours and found out that was stage 3 going on stage 4 cancer I panicked, I went back to gynecologist 2 weeks later removed sutures and was told he was confident got all the cancer when he removed lump that I thought was a cyst 6 months later tested site again no cancer cells found them back 6 months later all clear.

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Profile picture for caddo @caddo

I had a radical partial vulvectomy on October 25 and 6 lymph nodes tested/removed. At the time the lymph nodes appeared to be negative for cancer but the later testing on the frozen tissue showed one of the lymph nodes positive with metastatic carcinoma. I have a post surgery appointment with the surgeon and assume she will discuss this finding. Has anyone else had this experience?

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I will have radiation therapy. I checked out the group for that but couldn’t find any posts. Has anyone had experience with it
I also have an infection, which is being treated with oral antibiotics.

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Profile picture for caddo @caddo

Thank you so much for your reply. I’m sure I will know more after the appointment with the surgeon tomorrow and, hopefully, will be less stressed after I have an idea what the plan forward will be.

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Thinking of you!

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Profile picture for kimferguson9968 @kimferguson9968

I have had vulvar cancer 3 times. I’m sure it’s back now!! (Appt 11/28! 3 weeks!)
I had a left side full vulvectomy my 1st surgery. The 2 others were areas they cut out! 😢
If you have an questions let me know. Wish you the best!!!

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@kimferguson9968, oh what a sinking thought to feel sure your cancer has returned, again! What symptoms or indications are telling you it's back? ((hugs))

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I have had vulvar cancer 3 times. I’m sure it’s back now!! (Appt 11/28! 3 weeks!)
I had a left side full vulvectomy my 1st surgery. The 2 others were areas they cut out! 😢
If you have an questions let me know. Wish you the best!!!

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