Vulvar Cancer: Anyone else?

@yoopergal55 Welcome to the Gynecological Cancers group. Thank you for your supportive words to the other women in this group and reminding all of us that being an advocate for oneself is the best thing we can do for ourselves.

Do you live in the UP of Michigan?

Ok how does no underwear help? I have not tried this. Doesn't the scar hurt worse with just pants on? Do u wear leggings or sweats?
Thanks
Bobbi

Hi ladies, I'm new to the group but unfortunately a veteran to the vulva cancer. I won't go into everything right now but I am thinking of all of you who may be just beginning your journey. Stay diligent in your surveillance. My precancer and cancer began in 2007 & after four wide local excisions I was referred to Mayo where I still go since 2013; many years we traveled up to 15 times in one year from MI to MN for my cancer.
It is not easy, you are your biggest advocate because you know your body best. Biopsies suck, but they are so important. I used to say after about 7 surgeries, "why aren't we doing chemo or radiation" and many surgeries later, I endured chemo and radiation and all it did was make my case worse. The damage my body has now from the radiation is horrible and we can't go backwards only forward. I'm a big advocate for standing up for yourself, asking for the best of the best...even at Mayo there are some not so great surgeons and physicians. Hugs to all of you!

I had vulvar cancer in 2023. My last pet/mri came back fine. Is anyone still suffering with inflammation/itchiness that comes & goes? Not sure what to use?

I also used aquaphor during my treatments and still continue to use it on bad days. I also prefer no underwear!! Do you still suffer with some itchiness or inflammation? I think I need to be careful with detergents I use!! Thanks for your feedback & help!

During and after radiation treatments I used Aquaphor regularly. I don’t need it anymore but it did help soothe that area as well as baths with Aveeno soaking powder with oatmeal. Even after one year I still do not wear underwear, it’s just too annoying. I have a simple bidet that my husband installed on the toilet for cool water relief. This also helps keep things clean since soap tends to dry and irritate this area when I take a shower.

Are you using that during or after you finished all your treatment? My irritation & itchiness is a side effect since my treatment 1 year ago. My oncologist suggested a vulva mosterizing cream OTC, but I think I need something stronger! Any suggestions?

@komiskey10 I had the same thoughts about how long the uterine cancer (endometrial cancer) that I was diagnosed with in 2019 had been there. But since I could not go back and change the past I kept bringing myself back to the present and reminding myself that I was doing everything I could to take care of the present. I chose to put my trust in my cancer care team at Mayo Clinic and that kept me centered. That helped with the worry but the worry was still present. I could make the worry less intense by continually bringing my mind back to to the present. I hope, too, that your consult at Mayo Clinic will provide you with the reassurance that the other two opinions did not.

My doctor prescribed clobetasol. It comes in a cream or ointment. I use it once a day and it really helps.

Thank you for your kind words. It's about 300 miles. In my mind I know waiting and having all the additional testing is the right approach, but on the side, I worry that it has had 3 more months to grow. I'm anxious and hoping things will not be as scary as the other two opinions provided.