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

I was diagnosed with invasive squamous cell carcinoma of the vulva that is not hpv related. I had a wide radical excision of the vulva on March 3 and removal of sentinel lymph nodes on both sides. . At that time they said the margins were clear and there was no sign of more cancer. Then on May 20 I had surgery on the left side of the vulva due to differentiated Vulvar intraepithelial neoplasia grade 3. I am still recovering from both. Both lower sides of the vulva are gone. That does not bother me as much as the pain. And the fact that it can recur. I spend too much time worrying and crying. I know it will get better once I can sit down normally and get feeling back down there. I talked with a hospital chaplain and that really helped.

@bobette1 Thank you for letting me know how your appointment went with your oncologist.

It's great that you will have the PET scan very soon and surgery can be scheduled quickly if all goes well with the PET scan. It is good news that your oncologist believes all you will need is surgery which is reassuring. You will know very soon the direction your treatment will go.

Oh, it sounds so uncomfortable for you. I didn't know what I'd feel like doing after my surgery so I spent some days before then cooking and storing away meals . That felt good to me. What are you doing to take care of yourself that feels good to you?

@my4gratefuls
I am so sorry you have to go through this. I have basal cell carcinoma of the vulva, that's extremely rare. I had a partial vulvectomy a month ago, but I still sit on a donut and still have the never ending weeping. I'm old, so I'm "lucky" this didn't happen when I was younger. Still, it's devastating for a woman to lose what makes her, physically, a female. I no longer cry, but I am angry that so many people are totally insensitive about this. It's a personal, tragic experience. We will learn to live with this in our own individual way. It's a loss, so we are dealing with grief. Small pleasures really help, so try to find those and enjoy them as much as you can. We still have life. Hugs and comfort to you!

@janthetravlr
I'm grateful for your comments. I'm an older widow and am concerned about the self care after "the big scoop" as I'm calling the surgery.

@kate14
It certainly is the big scoop! I have 5 weeks of healing so far and expect to have at least 4 more. The weeping continues every day, but I no longer take any pain pills. One item that helped me more than anything was the add-on bidet I bought to attach to the water line of my toilet. This is a great help to any woman who has gone through genital biopsy or surgery. It isn't expensive and it's easy for a handyman (or you) to attach. It has saved me.