Vulvar Cancer Support Group

Cancer of the vulva (also known as vulvar cancer) most often affects the inner edges of the labia majora or the labia minora. If you or someone you know has been diagnosed with vulvar cancer, use this community to talk about your experiences and gain support through other people going through a similar struggle. You're not alone

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themacgirl 04/22/2016

Hello,
recently i was diagnosed with this rare type of cancer. On march 14th i went trough a small surgery, where a small lesion/first diagnosed as levcoplakia/ was removed from my upper side of the vulva near the clitoris. The histological result showed early differentiated type of squamous cell carcinoma, which was very close to the resection line . As i had no other symptoms or complains except the itching of that lesion/which went away after surgery/ the doctor was very much surprised with that result/especially considering my age. Next week i have an appointment with my doctor and he'll let me know what we are going to do from now on. As he first sad on the phone, he suggests another surgery of the same place, but deeper and probably get my clitoris removed. I don't know what to expect. What will be the consequences and is there a way to see if there is cancer in other parts of my vulva? I'm so glad i found this group, if there is any similar case I'll be very thankful to discuss and have some more info.

lookbeyondtheclouds 04/22/2016

Hi! This is really unsettling news, but it sounds like you are in good hands with your dr. As you have noted, women in this discussion group have had all kinds of experiences with this type of diagnosis, in the vulvar region. For now, try not to read too much online and try to be patient until your dr tells you more next week. Once he has a plan, we'll be able to offer you some insights. For now, please know that we are thinking of you and waiting for your updates so we can help in any way possible from our experiences. Take care and God bless!

themacgirl 04/22/2016

Hello, thank you for your kind answer. I guess i really got too much info in my head for a very short time. Thank you for your support and hope everything will be ok with all of us!

humorhasit 04/23/2016

It's nerve wracking to wait. I wanted answers for every question that popped into my mind during that time. I wrote them down so at my appointment I could get the answers I needed. Having a good support system really helped as well. The women here and my family have been a tremendous help getting through this.

I had questions about the level of sensitivity in the area and sexuality post surgery and what it would look like. My oncologist was thorough about providing answers and even showed me on a picture approximately what changes would be made.

Don't hesitate to ask your doctor anything that comes to mind. It's important for our mental and emotional health to have some idea of what to expect.

You will be in my thoughts.

themacgirl 04/25/2016

Thank you so much for your support! It really means a lot to know there are people who can understand what you're going through.

skinnybinny 04/29/2016

Sorry you are going though this at such a young age. My lesions were down lower at the bottom of the vulva so I can't answer when clit is involved.

Hopefully, you have more answers by now or are patiently waiting.

Hugs

themacgirl 05/31/2016

Hi all, thank you so much for your support!! The second operation was on may 16th, it went well and yesterday i got the results- it is all clear :) In a few months I have to do a pet-scanner and i have to check my lymph nodes once in a week, along with the regular appointments at the doctor's, but the most important thing is that the first battle is over. May God be with us all and hope there will be more happy ends :)

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