Vulvar Cancer: Anyone else?

Thank you so much. The time for all of my tests is fast approaching and I am extremely anxious. I have read so much about this cancer and most of what I have been reading is terrifying. I am comforted by the fact that I am not the only one to have faced this challenge. I was told I have lichen sclerosis, but now am not sure I do. I need answers and have to get this all straight in mind and try to accept what is happening.

@komiskey10 I see that your tests are scheduled for next week? Is that correct? I can identify with your anxiety as I felt so very anxious after my diagnosis of endometrial cancer (endometrioid adenocarcinoma) in 2019 and especially after a recurrence in 2021. I honestly thought I was living in a nightmare. But here I am to tell the story and to say that our anxiety leads us down a path of thinking about the worst outcome. For me I have found that what I imagine is the worst outcome almost never turns out to be true and I am far more resilient than I give myself credit for.

Can you think back to a time when you felt very anxious and once you were in the actual situation you handled it better than you thought you would? Afterwards perhaps you gave yourself a pat on the back? I'm not trying to minimize how you are feeling right now--only trying to suggest that you may have more coping resources than you realize.

Is there someone who will go to your appointments with you?

Thank you so much. The time for all of my tests is fast approaching and I am extremely anxious. I have read so much about this cancer and most of what I have been reading is terrifying. I am comforted by the fact that I am not the only one to have faced this challenge. I was told I have lichen sclerosis, but now am not sure I do. I need answers and have to get this all straight in mind and try to accept what is happening.

Even though my daughter has been with me and heard everything awful the oncologists have offered and is upset herself, she will be going with me to these appointments. Her support has been steadfast. It has been difficult to know if walking away from the first 2 oncologists was the right thing to do because of the additional wait time for treatment. The first two were all about cutting, no further testing. I chose to go back to Mayo Clinic because he was determined to do all testing before surgery. Hence the anxiety.... I have been given worse case scenario and pray that nothing like what they described is going to happen. Once testing is done and I know exactly what I am facing, I feel I will be better able to handle moving forward and figuring out what my new normal will be. Thank you for your kind words.

I have also been dealing with vulvar cancer, diagnosed November 2023. I had a radical valvectomy within a couple of weeks of diagnosis then followed up with seven weeks of radiation, no chemo. All my tests are clear now but there is that lingering worry of a recurrence. I also have lichen sclerosus which causes a lot of itching and burning. My doctor says this cancer was due partly to lichen and it tested positive for HPV. All the biopsies and tests were not difficult or painful so there’s really not much to worry about there. Radiation was challenging and took a few weeks after completed to fully heal. I had low energy for months and took about 3 weeks off work, but now, a year later I feel good. You can get through this!

I have also been dealing with vulvar cancer, diagnosed November 2023. I had a radical valvectomy within a couple of weeks of diagnosis then followed up with seven weeks of radiation, no chemo. All my tests are clear now but there is that lingering worry of a recurrence. I also have lichen sclerosus which causes a lot of itching and burning. My doctor says this cancer was due partly to lichen and it tested positive for HPV. All the biopsies and tests were not difficult or painful so there’s really not much to worry about there. Radiation was challenging and took a few weeks after completed to fully heal. I had low energy for months and took about 3 weeks off work, but now, a year later I feel good. You can get through this!

I have also been dealing with vulvar cancer, diagnosed November 2023. I had a radical valvectomy within a couple of weeks of diagnosis then followed up with seven weeks of radiation, no chemo. All my tests are clear now but there is that lingering worry of a recurrence. I also have lichen sclerosus which causes a lot of itching and burning. My doctor says this cancer was due partly to lichen and it tested positive for HPV. All the biopsies and tests were not difficult or painful so there’s really not much to worry about there. Radiation was challenging and took a few weeks after completed to fully heal. I had low energy for months and took about 3 weeks off work, but now, a year later I feel good. You can get through this!

@komiskey10 You've raised a kind and compassionate daughter who will stay by your side no matter what. It must be difficult for you, as her mom, to not only try to manage your own emotional pain and anxiety but to watch your daughter try to support you. It's good that you chose to return to Mayo Clinic. With all the testing and appointments you will have so much more information and can make informed decisions about what you would like to do. We travel 460 miles to Mayo Clinic every six months for my cancer surveillance appointments and other specialty appointments. It would be more convenient to try and find this medical care at home but I know that my medical providers at Mayo are thorough and never rush me through appointments or to make a decision.

What is the distance you travel to Mayo Clinic?

How are you dealing with the itching & burning? Are you using anything for it?
Creams?? OTC or prescription?
Hope you are doing well!

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.