Vulvar Cancer: Anyone else?

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!

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.

@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.

I agree! You are not to blame. Women do take care of their bodies!
Not sure if I would trust any of the doctors. They sound like they don’t know what they are dealing with and that’s unfortunate!

Hi, I am so sorry to hear you’re going through this. It has got to be frustrating and confusing. The one thing that I have learned through my journey, is that you need to be your own best advocate. You know your body better than anyone else.
Have you mentioned the different pathology reports to the doctors? I would start there. They should explain the difference in findings to you and you should be very comfortable and confident in their answers.
Verify with your doctor regarding the vulvectomy and having to wear diapers, they might be talking about a different type of surgery.
Hopefully, other women on here can share their experiences, as well.
Most important, this is not your fault. There are several causes to this rare type of cancer.
Please let us know how you’re doing.

You are so right!
I thank above every night for giving me another day!
I’ve learned how precious each day is. Just wish I could adjust easier to my new normal! Thanks for listening!

I think we’re all trying to figure out our new normal.
I do experience itching and irritation. My dr was giving me a prescription for a yeast / fungal infection that helped. I have been using Vagisil and Monistat, both are over the counter and much cheaper and most important, they work.
I am also getting frequent UTI’s, which I never had before.
I still have to know where the restrooms are, but it’s a fantastic day when I realize I’ve been out for several hours running errands… and no “issues”! I definitely have learned to appreciate the little things.

I was diagnosed in November 2024. I haven't had any treatment as of yet because the first two gynecological oncologists were both set on doing total radical vulvectomies without any type of testing. Both made me feel like I was to blame for this. I was told I would never work again, would have to have someone care for me, would be in diapers for the rest of my life and have lymphadema. I had a pimple, which I immediately sought medical care for, and the biopsy removed it all. The 3 doctors I have been to can't even find the area with magnifying glasses. I have no symptoms - no itching, pain or sores. I have 3 very different pathology reports with depths of 2, 7 and 9 - all for the same specimen and mild-moderate, moderate-severe and locally aggressive for diagnosis. Needless to say I am very confused and afraid of what is to come. I have pelvic mri, petscan, colposcopy, additional biopsies scheduled for the 19-20th. I am sure after testing is complete, I will be scheduled for surgery and/or chemo and radiation. Would appreciate any guidance with what is to come.

Thank you for your feedback. Many side effects that come & go over time!
At one time I needed to know where rest rooms were at all times when going out! That’s gotten better but still have some bowel & bladder issues. Do you experience any occasional itching or irritation in the vulvar area? I guess this is the new normal for me!
Any feedback is helpful! Thanks for listening!