As I have been sharing info about Paget's of vulva in private messaging with another member, I have realized that there is so much I have learned over nearly 10 years and 6 vulva surgeries that I would like to share with anyone with a gynecological cancer. So here goes:
1. Do not be timid or ashamed. I would gladly share everything I know with anyone who would listen. If people are unaware, especially medical folks, you have to educate them, & be your own advocate. Always take someone with you to appointments if you can & take notes & ask questions! And do your own research! We are blessed to be living in the age of the internet. Use it.
2. There is a medication called imiquimod cream to use in lieu of vulva surgery for Paget's, for those who opt to not have surgery. Some folks have had good luck with that. I tried it for awhile & found it to be difficult to tolerate: burning & itching. But I might consider it again when I'm told I need another surgery.
3. Paget's vulva surgery is not a "once & done" surgery like appendix removal. For no rhyme or reason, it continues to return. So consider carefully the big picture of how your choices effect the quality of your remaining years. The profile for getting Paget's cancer is white, 65-75 yr, female. Always exceptions, of course.
For example, a male oncologist wanted to perform a "radical" vulvectomy, which included removing my clitoris, & he could "reconstruct" that for me if I wanted. I sought a 2nd opinion. I know it is just a body part, and if I thought it would save my life, I suppose I would consent, but this surgery is already mutilating, & so I prefer to keep as much of my body in tact while I can. And there are no studies I a have found that support any more success in eliminating Paget's with a radical rather than a partial or even a simple vulvectomy. I don't regret that decision.
Thanks for listening. Hope some of this is relevant to someone.