Needing advice from women who have had vulva cancer

Id likes to ask for some information/ advice from some fellow ladies who have struggled with vulva cancer. I want to post this anonymously cause I haven’t told my family or friends yet, and that’s cause I don’t want to freak anybody out unnecessarily, you know? For now, I just want to research and wait to see what the doctors have to say about it before I tell anybody. Anyways, it started with what looked like a blister or a burn or just a weird patch of skin on my vulva. Thought me and hubby were too rough one night, but it just didn’t go away. I visited a doctor finally after about a month (although I’m pretty sure the burning/itching was there for at least a month before I found this obvious spot), and we did swabs that all came back negative. Did more tests and more creams. Steroids, fungal, antibiotics, creams, everything. Won’t go away. Finally, my OB sent me to a skin cancer specialist who, at first glance, said, “Ya, that looks like a basal cell skin cancer. It might, however, also be a tumor. I’m not sure which kind, so we will test for these four main cancers and go from there, but I think it’s just that minor form, so don’t worry too much about it. We will call you with the results.” Everything I’ve googled about vulva cancer looks like it and sounds like it. It’s also what my OB was Assuming as well. Anyways, I’m actually so uncomfortable with it. Not only are I and my husband very sexual people, but I am 6 months pregnant (and pregnancy sex has been the BEST sex of my life!). But it hurts a lot right now. It aches and itches, and even five days post-biopsy, I’m bleeding, and it feels worse than before. And normally when I don’t feel good, my husband gives me the big O to make me feel better (at least daily) but he can’t even touch me right now. And now I’m self-conscience of that area, and I’m worried he will look at it differently (even though he says he absolutely will not and he’s been great about it). I know this is long, sorry. I’m just looking for stories or words of encouragement from other women who have struggled with this. Tell me it’s going to be ok?

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I have never experienced this but I am so sorry! Prayers for you!!

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I used to work in dermatology and Basal Cell Carcinoma is cancer that can be easily removed and it is a cancer that stays in the area and does not spread to other areas of the body. However, if it is a tumour, I do hope they treat it quickly and remove it for you. Hugs to you and I hope it all goes okay xx

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My mother had vulva cancer,she had surgery to remove all lymph nodes in her pelvic area and reconstructive vaginal surgery. I did not want her to have chemo so the doc said it could be taken care of with surgery and radiation. She pretty much has awhole where her vagina used to be,no labia at all, but shes been cancer free for 6 years now

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Had the same issue about 15 years ago. After many trips to dr about sever itching…was finally sent to oncologist and was diagnosed with squamis cell carcinoma. Had it surgically removed, and have had full recovery with no further issues. They even made it look “pretty” again, and everything works as it should…

It was more severe than first thought, and was both sides…dont be afraid…

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I have been there. It gets better. I still get occasional cells at my check ups but they just remove them at the doctors office. Was diagnosed in 2003. I had a vulvectomy but if a man really loves you he won’t care how it looks. Long as it functions. Just keep up with your check ups and take care of yourself.

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I have basal cell and squamous cell skin cancer i had one tumor removed all on my face.i have one in my hair on my head there going to remove. If you dont have it done the tumor can grow roots that can grow into your organs. Skin cancer can metabolize it will still be called skin cancer started on skin turn into organ cancer. Dont be embrassed be smart. This is on my face you can hide yours. Also it does hurt and burn and itch i get fevers. Heal God Bless You.

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Yes I have. I was diagnosed in September 1997. I had your almost exact symptoms. I had surgery to remove the infected portion and was very lucky that we found it early and did not have to go thur chemo. My ob gyn did the same thing as yours. My husband was very understanding. In my case unless you are a doctor you would never know part of my vulva was removed. But I get your uneasy feelings and doubts. Sounds like you have a wonderful husband that loves you for you. Please feel free to reach out to me if you want to pm. It’s a scary thing.

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Don’t be self conscious about it. Beauty is in the eye of the beholder. He sees you not your area. He truly loves you for you and will never let something as simple as cancer ruin your lives. I as a woman feel the very same way. Yet my fiancé says that he doesn’t look at beauty from the outside because it fades with time but he looks at the beauty from within because no amount of money or plastic surgery can change your heart and soul. Remember that everytime you feel like that.

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I had squamous cell on the outside of my vulva and had partial vulvalectomy. It was done outpatient and it was a breeze. I noticed a lil dip in the shape and hair doesnt grow there anymore. But just looking at it you would never knew I had anything done if I didnt point it out.

Please be careful what you research on line. I’m a nurse. when I got renal cell carcinoma in one of my kidneys, I researched on line. Even though I know a lot my specialty wasn’t cancer. I researched on line and had myself so worked up. Each case in different. The best place to get detailed information is from your doctor. Write down a list of questions to ask. Start asking questions right away. If you don’t know what to ask tell them. Oncologists and their staff are very amazing people. Good luck, and I’ll pray for you.

I had vulva cancer and had outpatient surgery to remove it. I went through same symptoms as you are reporting. It took time after surgery for things to return to normal but they did. I continued to have problems with cervical cancer that could be treated in doctor office for years but I have been clean for years now. Better to get rid of it! Try to keep it dry and clean which is hard but can be done with gauze and sanitary pads. This helps with itching and pain. Use water frequently to cleanse area. I agree with earlier comments about finding other methods with husband and know it won’t last forever. I never had HPV so it is quite possible that won’t be a problem but work with your doctor. Mine told me to inspect and test frequently to avoid things getting out of control. Only tell people you feel need to know. It is private just like everything else in your life. Most folks that care about you will be supportive. Take care!

Did you have a Pap that came back HPV positive? I’m kinda in the same boat. I had been itching on & off for months. It wasn’t a yeast infection. I assumed it was hormones due to my age (almost 50) & then I noticed the blister looking thing. Had my routine pap & it came back showing HPV. I was referred to GYN who did a biopsy that showed squamous cell. She wanted to refer me to a GYN oncologist, but we I decided to do some kind of laser treatment by her & repeat the pap in 6 months.

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Best thing for you and your baby is to find a top Gynecological Oncologist for the best treatment Now!!

cancer usually doesn’t hurt, could it be something else like a boil, good to have it checked out with the baby coming and all. The doctor might not do much till after the baby is born.

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Your baby and your health should be the number one concern not sex. I’d be scared out of my mind and sex is the last thing I would care about. Priorities!

If it’s painful to have sex, why not just cuddle or connect in nonphysical ways? Consider it practice for the 4-6 weeks after birth when your parts are sore, bleeding, and stretched out and you are tired from taking care of a baby. Make sure you follow up with your dermatologist and OB. Rest, take care of yourself. Remember, there is more to marriage and live than sex ( even really good sex).

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You’re lucky to have your husband while going through this. I lost my husband to lung cancer and I beat tnmbc 3 years ago. Stop with the sex for a few weeks and let the biopsy site heal. Basal cell cancer isn’t normally aggressive so it should be able to be surgically removed and possibly no chemo or radiation. You’ll be fine :wink:

I pray it was caught early, and you get the right treatment and have a beautiful healthy baby.
God Bless

God Bless