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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foreveroptomistic 03/07/2017

Hello All,

New to this site. I'm 42 and have been fighting reoccuring vulvar cancer\VIN for the last few years. I have had two battles with vulvar cancer in Aug 2016 partial vulvectomy and June and July 2015 2 partial vulvectomey\and then a total clitorectomy between the two times. I had originally started with lichen in 2013, then VIN with 8 laser surgeries over the last few years, have come up as hpv positive. It seems to be coming back every 6 months now either as VIN or now as cancer, even when they laser it comes back within 3-6 months. Just had another two biopsies in Feb, I'll get the results back end of March\early April. Also now showing signs of early changes of cervix, that they are now watching, I'll get more results on them at the same time.

So far they haven't wanted to do radiation due to my age and haven't done chemo. But I am so tired of it coming back constantly, does anyone have any suggestions or idea... I'm already seeing an oncology naturopath, trying to eat healthy, to try and boost my immune system, non smoker. Have a low immune system due to arthritis from a young age.

Feel like I'm running out of idea's, it seems like all of life is starting to revolve around a constant cycle of biopsy, surgery, infections, recovery and then wait to see if it comes back in a few months. I'd just like to find a way to stretch the intervals longer so that I can enjoy more of life with my kids, not be off work constantly (they're getting fed up) and be able to plan some of the fun things in life. (like a vacation, going swimming, signing up for classes etc...)

Egret 03/27/2017

I don't have any ideas right now, Optimistic, but I wanted you to know that you are not alone. This secret creepy cancer is just horrible! Maybe a hobby that you can share with your kids would be a good distraction? Hang in there!!

LookingBeyondTheClouds 05/07/2017

Hi, How are you doing by now? I hope you're feeling more hopeful. I've been away from this website for awhile but may have a few insights to offer, as I've had vulvar cancer surgeries(squamous cell carcinoma) twice(complete removal now, along with some lymph nodes and a hysterectomy). In Feb., 2016 I was diagnosed with another squamous cell carcinoma lesion, this time on my urethra. I had 3 months of chemo and radiation. Then I had to wait for 4 months before having a PET scan or MRI, as my body had to have time to recover from the inflammation. I got happy news in Oct., as my surgeon said, "It looks like the cancer has left your body." I dealt with lichen sclerosis--and pain/itching-- for years before finally being biopsied and diagnosed, the recovery from all of this has been a journey, but I feel blessed and am trying to make good choices for the benefit of my immune system. I had good blood tests in Feb. and have another check-up coming up. I'm hoping that you, too, have gotten some answers and a "plan" to kick this painful stuff!

go4it 05/20/2017

Hi, Foreveroptimistic. I totally understand the frustration and worry that comes with dealing with this situation. I was on a personal/emotional/spiritual journey for two years before being diagnosed with VIN 3, and so far, that has made all the difference for me. And what changed my attitude about dealing with challenges and set-backs was a book called The Power of Now by Eckhart Tolle. The philosophy embedded in this small book has changed my life. I cannot control everything that is going to happen in life and with my health. What I can do is be ready mentally and emotionally to deal with those curve balls. Prior to reading this book and practicing the ideas in it, I would have been an emotional wreck with this diagnosis. Now, I am more balanced in my outlook about life, and it's been such a blessing. I know this sounds overly simplistic - to recommend reading a book when you're dealing with a major health issue - but what do you have to lose by trying it out?

mscott 07/21/2017

Hello all. I'm new to this group and want you to know that I admire your strength and you are all in my prayers. About a year ago my mom had surgery to remove cell carcinoma and after her recent check up; she was told it's back again. It's only been a week and she's just in the process of "research" for a great doctor, a second opinion, the best type of surgery/options for treatment. Any information you can provide in those areas would be great. I know she's nervous but putting up a good front; I'm trying to do everything I can to help make sure she is her best advocate for the best care in dealing with this. She's in CO and I'm in NY... Thank you for sharing your stories. This is a terrible things for anyone to have to go through and I'm praying for each of you for full recovery and peace always.

cherie 08/21/2017

I am new to this all as I am only 6 days post op. However, M D Anderson and Sloan Kettering are both excellent resources for vulvar cancer treatments. I am probably going to go there in a few months for a consult.

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