Squamous Cell Vulvar Cancer: Who out there has this cancer?

I was diagnosed in Sept 2022 and had surgery 11/21/22 and an in the middle of 6 chemotherapy treatments and 26 radiation treatments. I was told that they thought surgery would be all I would need. I am considered stage 3. What stage is yours?It is very frustrating as u are right not very common and who wants to talk about it. The lead up to the surgery was terrible since the tumor kept growing and where it was located was soooo uncomfortable to sit or work. I am off work now to get through this treatment. Tell me what it was like towards the end of chemo & radiation. I am 54 so they saying by being aggressive makes it so I have more life to live. I get it the waiting made me feel ignored like don’t they know how uncomfortable this is? Please keep in touch. Would love to have someone else to talk to.
Take care of yourself,
Bobbi Gruesbeck

I was diagnosed in August of 2022. I had 6 chemotherapy treatments and 37 radiation treatments. I had to wait 3 months for my PET scan - tumor shrunk but I still have it as well as pre-cancerous cells on the opposite side. I’m in tremendous pain. I am supposed to have surgery March 20th and hoping to have it moved up. This cancer is very rare and would wish there were more forums where we can share experiences.

Welcome @annie7837. I'm sorry to hear that you are in such pain and still have 3 weeks until surgery. I'm glad that the tumor has shrunk thanks to radiation and chemo treatments to make the operation possible. Is the pain from the tumor or from radiation or both?

Hello,
Currently awaiting my online appointment with my surgeon. Have had biopsy, CT and PET scans.
Trying to avoid tight pants, lol! So far just minor discomfort, but of course I am more aware since my diagnosis.
I am a 3- Day walker for Breast Cancer....so of course I get diagnosed with something I never even new existed!
I had been sharing with the nurse and PA how absolutely blessed I was to be so healthy and able at 61 to be participating in a 60 mile walk. Then the other shoe dropped, I guess. I agree with the previous comment that practitioners should share what they are looking for. I knew I had this "thing" down there for a while. Thought maybe my old episiotomy scar was irritated. Meant to ask about it and forgot until she asked me about it. Had I been better informed, I may not have waited.
We will see what that costs me once staging is complete.
Thank you for being here. Nobody knows except my husband yet.

I have been dealing with a similar issue for almost two years now. Last year I was given so many antibiotics. They kept thinking it was just a infection. Mine is more in the higher area around the clitorris. It’s so painful. Having to wear lose pants all the time. Hurts to sit. I’m just feeling completely alone. I’ve been to my doctor so many times. He says this is the first time he’s seen this. He doesn’t think it’s cancer but I do. He did a small surgery thinking it was an infected cyst. That was in Nov. Everything seemed better until last week. I felt the same little bump/pebble and then a few days later it was inflamed and feeling like it was going to rupture. I’ve been sick for several days. My side hurts all the way around to my back. So glad to have found this group.

Hola …. Acabo de ser diagnosticada con recurrencia cáncer vaginal ( Adenocarcinoma) después
De casi 7 años cáncer free .
Aparentemente cuando es recurrencia es más difícil y se requiere de una operación mayor
Si los
Estudios
Indiquen que no se encuentre en las paredes de la pelvis y si no pueden operar el tratamiento sería quimio . Estoy bien deprimida y con mucho miedo mis hijos sufren mucho ya que la quimo no lo cura . Por favor alguien que me pueda ayudar que tenga testimonio de lo que me está pasando o algo parecido quiero saber cómo le está lleno todo .

Hola, @angie0374, bienvenida. What a beautiful picture of you. I hope you'll add it to your profile.

Angie, of course you are scared and depressed. Fellow members like @bobette1 @jeanadair123 @annie7837 and @naturegirl5 know what it is like to get bad news. You've been here before and worked hard through treatment and have been in remission for 7 years. This is hard to accept that it has come back. But you will do this for your children.

When will you get the imaging results and know whether surgery is possible or not? Sending you courage and strength.

I'm a cancer survivor from squamous cell carcinoma stage 3. I found the limp in my vagina. Surgery chemo and radiation. Let me know how I can. Help.