Aggressive Angiomyxoma

Has anyone ever heard of this? It is a tumour of the Vulva or Groin area which is in most cases benign but more common in women of child bearing years. Unfortunately in my case my tumour is malignant. I was diagnosed about 2 years with this Aggressive Angiomyxoma (Vulva cancer). I had it removed and received treatment for a year and it was in remission but appears to be coming back even more aggressive than before. I know this type is very rare but there must be someone who has heard of this.I have 2 young kids and don't know what the future holds because there is very little research out there on this specific form of Cancer.  Please Help!

Message was edited by: strong-gal1

  • Honestly I completely forgot about this forum as well until you replied.

     

    I see a doctor who has actually had other patient(s) before me who have also had AA, and he's been fantastic with everything.I'm surprised to hear how long your surgery (and others') took, as mine only took an hour and a half. Then again, it was a surprise surgery by someone who had never seen it before and didn't even know it was a mass, let alone a tumor, until he was already operating (this was before I went to MSK).

     

    Can I ask what age they diagnosed you with it? I feel like no one's really mentioned it but as I was only 15 when I was, I'm curious about the general age range of this affliction.

  • I was 31 years old. However, it did present itself when I was 26 yrs after I had my first Son. The Doctor didn't know what it was and it wasn't bothersome (maybe because the lump wasn't on the outside?) so I didn't look into what it could be. It only grew in size when I was pregnant with my second Son 5 years later. So the pattern was, when I was pregnant and no longer menstrating, it would grow. I'm now 48 years old and 3 weeks ago, nothing related to Angiomyxoma, I had a partial Hysterectomy. So far everything is fine, I'll keep you posted if you'd like.

     

    All my best to you!