Sounds like it's rare, non malignant, that it can be removed by surgery and the prognosis is very good (although the surgery itself is not pretty). Is that right?
Im not sure if you still check this site , but I too have AA , and yes its a benign tumour but I would not be so flippant as to say ah well we are lucky
Any one not suffering from this form of tumour has no idea of the problems it causes and its propensitiy to grow back
I would have sympathy for any one who has either a benign or malignant cancer
either way life is never the same as we all face scans on a regular basis and the worry that surround them and the anticipation of results
I now face radical surgey once again to remove this tumour and run risks to my bowel , no to mention the fact that I have to
opt to have a hysterectomy ( of a healthy organ) in order to try to stem its regrowth
even after this surgery there are still no gaurantees as so little is known about Aa
The medical profession doesnt even know what makes it grow in the first place
I had surgery 5 months ago , and major surgey at that I now face the same and if they dont get is all its likely to come back
It has even been remarked to me by a member of the medical profession that it would have been easier to deal with if it was Cancer as they would use
chemo or radium , nothing works on this tumour except wide local excision , Hormone injections are used to shrink it but again no gaurantees that it can get rid of it , then the ovaries kick back in so its most likely to grow back
when in the pelvis as mine is it poses major risk to bowel, bladder , pelvic floor sphinicer muscles of rectum , provision is always made for
stoma during surgery given the risk during surgery to the bowel , stoma always a possibility which could be permanent or reversable if your luck and yet again another surgery
the possibility of incontenence due to bladder
and more problems with vaginal structures and in some cases tumour grows into muscles and fat of buttocks
In short this is a night mare and the there is no key hole surgery in this case
so every time they go in you have major op on your hands with long recovery
I would hasten to add with all respect to anyone who has gone through the terror of cancer or any major life threatening disease
this Aa is in many ways just as bad we never know any concrete information about its causes there is no cure except if the surgeon is damm good and can cut every little cell out of you cos it only takes a tiny amount left for it to grow back
I am a positive person and I have accepted my faith and life is some how mapped out
I have been unwell for 2-3 years with no explaination as to what was wrong
It was only through my insistance that I pushed for test after test that my tumour was found
this is such an odd rare disease there are no major symptoms it does not show up on a blood test
There is no money been spent in any major researh as this is bengin and not many suffer with it
also as there a so few suffers the long term follow up has been minimal
I even rang the cancer society here and was told they never heard of AA
and sure wasnt it benign so be thankful
I am on my own here as far as I know so far there is only one other case of vulval Aa in Ireland I have pelvic
I dont know about up north
but the girls in the UK and Sunrose in Austrailia has been my support , my shoulder to lean on
I have a fantastic family , But the girls know what our fears are and for them I am truly greatful
Kelly I only post to support but I would just like to be clear for anyone else who reads this post that just because
we do not have a malignant cancer life is not a bed of roses.
I understand that all cancers and any disease will have their own plus and negative more the latter I would say
and yes my doctor said whopee its benign and great it would not be the cause of my death
but by god could this tumour play havoc with my life
my questions were how many times could it come back and how ofter would they need to operate ?
the answer was a very honest 'I dont know ' from my surgeon
I respect her so much for her candour and honesty and I place my self in her very capable hands and I believe she will do everything
in her power to avoid any major damage while she cuts this damm tumour out
I wish you well and I hope you are winning the battle against AA
Diagnosed with AA back in October of 2008. Removed all visible tumor from the perineum area; it was very large. Since then no recurrence of tumor. Now I am getting yearly scans. How often are you scanned?
What you say is very true!!! One never knows when it will return, MRI's yearly and lots of anxious moments waiting for the results. I know it was very discouraging when the MD's had never heard of AA. You are in my prayers and we live for today.
Great news I am so glad they didn't find any tumor. Sorry you had to have a hysterectomy. I did see the other postings; Thanks. I wish you a speedy recovery. Are you taking any medications for this tumor?
I have AA too!! Visit rarercancers.co.uk to see our stories. only 140ish cases known so far in the world. It is generally benign BUT there are 2 reported cases of metastasizes which caused patients deaths so i challenge the 'benign' status of these tumours!
