r/vulvarcancer

My urologist found a spot on my vagina /vulva when removing my stent from kidney stones surgery. I had an appointment with my gastroenterologist this past Friday July 31. Said it looks precancerous or cancer. She did a biopsy and will not have results till next Friday and will call me. I am so scared and nervous. She said I would have it removed. Which I realize that. Waiting is the hardest part. She did not think it was something else.How do you emotionally get through this? I am a 62 years old scared out of my mind.

I wanted to share my experience in case it helps anyone else going through vulvar cancer, HPV-related disease, or intense pelvic radiation.
Background & diagnosis
• 66-year-old cis woman
• Tested positive for HPV 16 four years ago
• Had two colposcopies that were negative for HPV
• After 4.5 years, I had a hysterectomy
• During the hysterectomy, a mass was found at my right Bartholin gland
• A contrast MRI suggested a possibly cancerous mass
• Five weeks after the hysterectomy, I had an excision of that mass
• The surgeon could not get clear margins
• Pathology: squamous cell carcinoma, HPV 16 positive
• I consulted at Dana-Farber (DFCI) and Brigham and Women’s
• PET scan showed no lymph node involvement or other masses
• Final diagnosis: HIGH GRADE SQUAMOUS INTRAEPITHELIAL LESION (HSIL, VIN III), possibly involving Bartholin’s gland ducts
• Staged as vulvar cancer, Stage IB, with possible Bartholin involvement
Treatment
• 7 weeks of daily pelvic radiation
• A vaginal dilator was used during radiation with lidocaine and aloe lubricant at week 6
• Once-weekly carboplatin chemotherapy throughout radiation
Pain and skin reaction
• Pain from radiation became incredible around week 6
• I was prescribed gabapentin for nerve pain and tramadol for pain control
• From the start of radiation through recovery, I kept the radiation zone very moist with a thick barrier ointment (basically Aquaphor-level product)
• I applied it to: inner thighs, both labia, clitoris, perineal area, anus, and surrounding skin every single time
• When pain ramped up in week 6, I started mixing the ointment 50/50 with aloe + lidocaine gel
• Every time I urinated or had a bowel movement, I:
• Used a peri bottle to dilute the urine and reduce burning
• Showered
• Reapplied the ointment mixture to the entire area
• Around week 6, I switched to wearing dresses and no underwear because everything was too uncomfortable to touch the skin
Where I am now (10–19 days out)
• The skin that had turned literally black and was very swollen is now starting to heal
• The black skin is peeling off
• Swelling has gone down
• At about 19 days out, my nerve pain is less intense
• My energy is still very low; daily activity is basically nonexistent except for knitting and reading
• My absolute neutrophil count is very low, so I’m isolation-level cautious:
• Avoiding being around people
• Not eating raw food due to infection risk
What I wish I’d known / what helped
• Being extremely aggressive with moisture/barrier care from day 1 of radiation made a big difference for me
• The peri bottle was a game-changer for reducing burning when I peed
• Mixing lidocaine/aloe into the ointment once pain escalated gave me some relief
• Soft, loose clothing (dresses, no panties) was the only thing tolerable at the worst point
• It’s okay to do almost nothing for a while; my body clearly needed that rest
I’m still very early in recovery, but I wanted to document this while it’s fresh. If anyone is facing a similar diagnosis or treatment plan, I’m happy to answer questions or just be another “you’re not alone” voice.

hi i just found 2 really small lumps inside near my vaginal opening and don‘t know whether its a cyst. they are quite red and cant tell if its a real dark red in middle or blood?? really worried its a cancer or something. im 17 for context. sorry if this is insensitive to ask on here in case its not but i am spiralling a bit

edit: also never been sexually active