Adenoid cystic carcinoma (ACC) of vulva: Anyone else?

@stoligirl

Welcome to Mayo Connect and thank you for posting about this rare type of cancer. While I have not had this exact type of cancer myself, I have had a rare type of malignancy called neuroendocrine tumors (NETs) and I understand how important it is to find a doctor who specializes in something rare like this.

You did not mention the geographical area where you live, however, in a google search I found the following centers listed. I have provided links to their webistes:

Mayo Clinic, https://www.mayoclinic.org/diseases-conditions/vulvar-cancer/care.../mac-20368108 Mayo has facilities in Minnesota, Florida and Arizona

Moffitt Cancer Center, https://moffitt.org/cancers/vulvar-cancer/

Siteman Cancer Center, https://siteman.wustl.edu/ncipdq/cdr0000062886/

If you are comfortable sharing more @stoligirl: when were you diagnosed? What treatments have been suggested for you?

Hello @stoligirl,

I'd also like to introduce you to Vicky @vsinn2000, who has so graciously shared her experience with vulvar cancer you can read more about Vicky’s journey here:
– Radiation therapy for vulvar cancer https://connect.mayoclinic.org/discussion/radiation-therapy-for-vulvar-cancer/

Along with @hopeful33250, I look forward to getting to know you better, @stoligirl.

Hi Teresa! Thank you for responding. I am in Colorado. I was diagnosed 9/1/2017. 1 year ago today. So far, I have had 3 partial rad vulvectomy's and a colostomy placed. 2 recurrences in a year. Radiation was briefly mentioned, and may still be on the table. But the Dr previously nixed it as he feels that radiation and/or chemo would not be beneficial for this particular type, and I'm not keen on yet another surgery at this time. It has become very frustrating reaching out to different treatment centers to find experience with this.

Thanks Kanaaz. I'll definitely give it a read. Thanks!