Vulvar Cancer: Anyone else?

Good luck with your surgery, I wish you the very best. I feel like I am fully recovered now after five weeks but have just scheduled 35 rounds of radiation to begin after Christmas. My cancer is related to HPV. Even though the margins were clear from the lesion removal my doctor said I would have a 50% chance of recurrence without radiation so to increase my odds of no recurrence I have opted for more treatment. It seems that the anxiety of not knowing what will happen is half the battle, but I can reassure you that surgery was not as difficult as I anticipated. My lymph nodes have resolved after being drained a couple of times. Everyone seems to recover differently, Hopefully you will breeze through the whole process!

I am in the process of scheduling this surgery. Well, was on the schedule and now have to change doctors. Wondering how you are doing by now. I have done 2 sessions of immunotherapy in hopes of shrinking the lesion so maybe surgery can be less invasive. I’m nervous about the after effects.

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?