I'm sorry to hear of your diagnosis. What do you know about it? Have you seen a gynecological oncologist, yet? What treatment is recommended?
There is a forum here called Cancer: Cervical and Ovarian. Since most cervical cancers and squamous cell, and I think vulvar cancer is usually squamous, you might find some information there.
I went into my gyn for a pap. I had a sore for some time, but just ignored it, assuming my urine was annoying it. He asked me how long it had been there. 8-12 mo? I think. He immediately closed his office, and literally sliced what he could get right there in the office. 1 1/2 hours. local anestheia. I had NO IDEA what was happening. I thought he was just gonna take a biopsy. He sent that out and it came back as not gone. I have an appt. with a gynecological oncologist on wed. I am terrified. I did research, what a mistake, I don't know what to expect. I just wanted to talk to someone who knows something. I'm already arranging my funeral. I can't think of anything else. I'm rambling... sorry. thanks for your response...
Honestly, obgyns are experts in vaginal infections, doing paps, taking care of pregnant women, delivering babies, and caring for a woman postpartum. They are NOT the experts when it comes to dysplasia. The gyn/onc is. I'd heard that over and over before I got to my gyn/onc, but now believe it. My obgyn was panicky at my adenocarcinoma Ia1; my gyn/onc said "it needs to be removed in the next 6 months" and then she gave me several options. My gynonc answered so many questions and that helped me calm down about my cancer and longterm outcome.
I strongly suggest you go to your doctor with a written list of questions. Leave room to write answers. If you have someone you trust, ask him/her to go with you to help remember what the doctor says.
A few of your questions might be to ask for copies of your pathology reports (including the one where the doctor removed the lesion); what is the name of your lesions/atypia; what is the treatment plan; do you have any options; how soon do you need treatment; etc.
My gyno. said he isn't going to answer real specific questions due to the fact he is not an Oncologist. Things have happened very quickly. I don't even know what its called. He just said it was definitley cancerous. Melenoma? Lymphoma? Adenocarcima? I don't know. I'm already thinking I'm a goner. It's odd what your head tells you when you hear the C word applied to you. Anyone else, it''s just a shame, sorry to hear it, you know what I mean? I am dreading the oncologist yet anxious to know what to expect. There is very little information i could find. And what I did find was horrible. That in itself scares me. I am just trying to stay busy and not think about it too much. thanks for your suggestions and your ear. You don't know how appreciative I am. Thank you. I will let you know what the Dr. tells me on Wed.