Hi Loomorg,
I think that everyone who has been through this lives with the fear of it returning.
My first occurence with squamous cell carcinoma was 14 years ago. I had a small recurrence 9 years later and most recently had laser surgery for VIN 1 or mild dysplasia.
Each time mine came back. I first noticed a tiny dot of blood on the toilet paper when I wiped. My immediate thought each time was "Oh No" it's back. Each time I immediately made and appointment with my gynecologist for a biopsy. Each time I was refferred to a gynecologist oncologist for surgery.
For me...The news the second and third time was much easier to handle because I was, by then, more educated on the subject of VIN. I knew that it was caught early and I knew that it was not yet full blown cancer (like the first time). The fear of surgery was much better the second time because I knew it was not as extensive as the first. The fear of my third surgery was not as bad as the first because I knew I could handle it...I had been through worse.
In the past 14 years, Medical knowledge on the subject of vulvar cancer has come along way. There are new treatments, new and better surgical methods. There is more awareness among women today that vulvar cancer exists. There are studies being done worldwide that I believe are so very close to a cure. This will be our saving grace. The recurrence rates have dropped considerably in the past 14 years. Mainly because of knowledge and awareness.
We need to tell every woman we know...to do self exams. Just like breast cancer. Examine the skin of your vulva for any irregularities. Look for any color change. A red dot, a white dot, a dark spot, a raised flesh colored dot, any lump, bump, skin tag, and any spot that might bleed occasionally. All of those need to be brought to the attention of a gynecologist for a biopsy. Do not depend on your GYN to look for changes. Only You can notice slight changes. And only a biopsy can diagnose what the irregularity is. Women need to know that a Pap smear does not look for vulvar cancer. You can have vulvar cancer and have absolutely no symptoms. A Doctor cannot and should never diagnose any irregularity by it's looks. Demand a biopsy! Awareness will save lives.