Vulvar Cancer: Anyone else?

I also have vulvar melanoma. How did your appt go? Do you have a plan in place?

I have no proof but as soon as my surgery was done I wasn't craving sugar at all like I was in the month leading up to it

@mdr3 I was told the same thing.

I'm just jumping in here because I was told at Dana Farber that surveillance after surgery (I did not have to have radiation or chemo either) is very important: every 3 months for 2 years, and then every 6 months (can't remember for how long).

@scm I did have a PET scan before surgery. It was scheduled so I could go to surgery immediately after. It showed lymph node involvement on the right side only. My gyn/oncologist removed sentinel lymph nodes from both the right and left sides as they are the first lymph nodes to which cancer cells are most likely to appear.

Upon examination after surgery, the cancer cells were only detected microscopically. I didn’t need to have radiation or chemotherapy, at this time, due to that.

@scm. The question of sugar and sugar craving is a good question to ask your physician at Mayo Clinic. It’s been something discussed here on Connect. I haven’t seen any evidence that sugar increases a tumor. I know that when I’m very stressed and anxious that I crave sugar and carbohydrates. Do you think that could have something to do with your current sugar cravings?

@scm I will answer your question from my experience at Mayo when I was diagnosed with endometrial cancer and referred to Gyn-oncology. My slides from pathology that contained my biopsy were sent to Mayo. The Mayo pathologist examined those slides and provided their diagnosis. In my case for endometrial cancer the gyn/oncologist explained that she would « sample » my lymph nodes in something called sentinel lymph node biopsy. I did not have any scans before my surgery (hysterectomy). I don’t know enough about vulvar melanoma but perhaps one of our members here can answer that question. What will likely happen is that you will first meet with the gyn/oncologist who will talk with you. If other tests are needed such as a PET scan then that will be ordered and can usually be done while you are already at Mayo.

Do you have a patient portal on Mayo Clinic? If not, now that you have an appointment you’ve been assigned a Mayo Patient Number and your can register for the patient portal. The patient portal will list all of your appointments and allows for messaging back and forth to your providers once you’ve been seen.

Mayo Clinic Patient Portal:

— https://www.mayoclinichealthsystem.org/patient-online-services

I had a biopsy from my ob/gyn and it was vulvar melanoma. Have an appt. now at mayo with a gynecologist oncologist on Dec 6th. Will she have to do another biopsy or do a pet scan to find out if it is in the lymph nodes?

I, too have been diagnosed with vulvar melanoma and will be going to Mayo on Dec. 6th to see a gynecologic oncologist. What does sugar have to do with the size of the tumor being removed? I always crave sugar but did not have knowledge that it would increase the tumor?

@buffalogal, I too, struggled with telling my two adult sons. I think it was because I didn’t want to believe my diagnosis, invasive Paget’s disease of the vulva. I did tell them as I felt they needed to know. They were initially upset, rightly so. But they have been very supportive and help where they can. I share as much detail as they are willing to hear. Sometimes, they tell me, Mom, I don’t need to hear this and that is fine. I understand.

I do have a brother who has listened to every detail. People are different. In the end, telling people helps me deal with everything that is happening .

I had a radical vulvectomy in September. The vulva and clitoris were removed along with sentinel lymph nodes on both sides of my groin. I am fortunate that I don’t need to have radiation or chemotherapy at this time.