Hi strong-gal1

I wondered if you'd seen this discussion on aggressive angionyxoma? It might be worth posting a message here to see if you can chat to others with the same condition as you.

Welcome to Cancer Chat,

Best wishes

Jane

Thank you Jane I thought I was the only one out there with this condition. Though its unfortunate that we are all going through this nightmare, its also comforting to me that i can learn more from others with this condition.

Wow! I'm in a state of shock right now. First thing I would like to say is how bad I want to reach out and hug all of you sharing on this rare subject. As I'm sure you can imagine, I thought I was the only one in the world who suffered from this horrible annoying cancer. Even though I was told there were approximately 200 cases reported but that was in 2004 when I had "the" tumour/tumor. In December of 2003 (just married 3mos earlier and a Mom to my 5yr son) My husband and I found out that we were having another baby! In January 2004 for my first OBGYN visit, "IT" was discovered. Needless to say that doctor after doctor, they didn't have much clue as to what they were looking at. I even had one Doctor tell me that I should think about stopping the pregnancy and receive chemo - therapy. Well, I didn't give up Hope and through a lot of phone calls and talking to people who look at you sideways when you try and explain what is wrong, I finally found a Dr. in Memorial Sloan Kettering in NYC and in August of 2004 gave birth to a beautiful healthy 12lb baby boy. My Doctor removed 100% of the tumour which he diagnosed as; recurrent Aggressive Angiomyoma (6.5cm), involving smooth muscle, skeletal muscle and fibroadipose tissue. He saw me three times through out my pregnancy and then 8wks after my son was born, I had surgery. Every six months I would have an MRI scan (my last one was in 2006) to make sure it didn't return because there really is no guarentee even if it's 100% removed. I now feel something is not right in that area and have a doctor appointment for the end of this month. I tried to find a discussion on this rare disease years ago but couldn't Everyone who has shared their personal story, I Thank you again. I wish you all the best ~Traci

Hi Traci,

I read your post from July of last year and wa wondering if you could share more about your story and follow up. Also wondering if you could share with me the name and contact info of the doctor at Sloan Kettering?

Hope you are doing well and a great success story.

Joe

Your story made me want to hug you. I too am finally having surgery for this horrible tumour. It seems to baffle even the specialist consultants. How are you doing now?

Hi-- 

I completely forgot about this forum and that it was in this email that i don't really use. 

Where in NJ? Have you consulted with a Dr. for them to try and remove 100% of it? The Doctor that performed my surgery is now retired. However, I remember there were about 6 trainees there to watch him perform my entire surgery (which took many hours). He obvisouly did this knowing that people like you and me would still be walking through the door. Good luck! and please stay in touch. Let me know how you are doing. 

Hi!!! So sorry for the very very late response. I couldn't remember where this forum was. However, every year on my Son's birthday I think of this and Thank God for the doctor who performed my surgery and saved my Son's life. I was told at 3 mos pregnant that i should consider terminating my pregnancy and receive chemo treatments. All because doctor after doctor had no idea what this tumor was. I refused and didn't give up hope that someone would be able to help me. That was 16yrs ago! My big baby boy turns 16 today!!! I had the surgery on 10/7/04 and thank God it has not returned. I do struggle with it mentally bc i do have some deformity where the tumor was. But I do my very best to stay grateful for my situation.... it could've been much worse. Please let me know how your surgery went. Hope you are doing well :)