Vulvar Cancer: Anyone else?

Hi all, I was diagnosed with vulvar cancer after a biopsy in April 2018. I had 8 chemo sessions and 35 radiation treatment, finishing in December 2018. I had a partial vulvectomy in 2019. I had internal exams monthly graduating to every six months. As of this past October, I hit 5 years cancer free, I have finally hit the 1 year appointment mark!
I realize how fortunate I’ve been. There has definitely been some big bumps in my cancer journey and it wasn’t easy, but I’m still here.
Support and this forum are extremely helpful. If I can help anyone going through this journey, please let me know. Good health and good luck.

Wonderful to hear positive news! I also was diagnosed with vulvar cancer stage 1b in may 2023. 32 radiation treatments & 2 chemo (was supposed to have 5 but had a set back from it). No surgeries. I’ve been cancer free since August 2023. I’ve had late side effects that no one tells you about ! Mostly in the pelvic & bowel areas. Did you experience any? Looking forward to hearing from you!

Congratulations! Believe or not, the five year mark will be here for you before you know.
Ahh, yes, the secret side effects 😉. I had uncontrollable diarrhea for years. I still do occasionally. What has helped me is eating 3 meals a day, being careful of what I eat - no onions, garlic, spicy food. I haven’t been able to eat chocolate since my last chemo treatment, which has gotten easier over the years.
Have you tried pelvic floor exercises? They definitely help. You look for exercises on line or your doctor might be able to prescribe physical therapy. I really hope this helps.

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!

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.

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.

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!

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.

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!

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.