I posted awhile ago. I am 3 years out since my surgery to remove this tumor; AA. I will be getting my annual MRI in December. How often is everyone getting scanned out there?
Hope you are well, I remember you and Neety from Google Group. It kind of tapered off and didn't hear from anyone anymore. So I'm glad I found you guys again. Take care.
i am being scanned between 3 and 12 months as its always growing back, my email is in feel free to email me,what surgery have u had and is ur tumour still growing
hi girls, i am scannedevery 3-4 months at the royal marsden in london. my AA was growing into the buttock not the pelvis and i hadmy ovaries out as the tamoxifen used to shrink it caused huge ovarian cysts that ruptured. a few months later the AA returned despite the ovaries being removed so i amnow on zoladex and AA is still there but not grown for a while. Zoladex is ok but has its own problems, my BP is now high, my cholestrol and triglycerides which worries me a lot. This tumour changes your life and there is always the possibility that it will change its behaviour there are no guarantees xxx
I was diagnosed just over a month ago, finally after just under 3 years of symptoms and mis-diagnosis. I was told it was a rectocele prolapse by 2 GPs and then when I got pregnant I was send from doctor to doctor (including "the prolapse specialist in Canada") and they all said "rectocele, we'll fix it when you are done having kids". I live just outside Toronto so I have been to 3 of the top hospitals and seen many highly respected doctors who all said the same thing. As my pregnancy progressed my ON/GYN wanted to do a c-section but I didn't so she sent me to get a second opinion at around 23 weeks, that doctor told me it was a rectocele and perfectly safe for me to deliver despite my very difficult labour with my first child. I wasn't ready to take one "Yes" when I had been told "no" more than once so I went for one last opinion. That doctor said she wanted to wait and see as I got closer to my due date. I ended up having an MRI 3 weeks before my due date which sent up red flags and a c-section was scheduled for the next week. My doctor asked if she could take pictures to review and get other opinions and she was able to examine the mass during the c-section. Not knowing what it was she didn't want to take any action and with the increased blood volume she was worried about the risk to me. Afterwards I was referred to a doctor at Princess Margaret Hospital (cancer hospital) and had another MRI, then a biopsy. Before the biopsy they told me it may be liposarcoma, and after 2 months of pure hell, we found out it isn't! (Next time lets leave out the sarcoma until it's confirmed please!!) I didn't get very much info and I didn't know what to ask as I was expecting cancer and was just relieved to hear it wasn't.
I have been reading about other's experiences and am very curious if anyone else does not have pain? I don't notice any bad pains that I can recall, but I have a prolapse that is very uncomfortable and makes every day difficult physically and emotionally. I am going back in November for a follow up MRI and then every year if everything is OK. The doctor explained that the surgery would be very invasive and leave me with a colostomy bag, a hysterectomy and lots of other damage. At 29 I can't imagine my life like that so it seems my only choice is to wait and see what happens which seems like a bad option to me also.
Any other younger women living with this or anyone who has not had any treatment?
hi tthere have u visited rarercancers.org? there are a few of us with AA on there and u will be able to read the full stories, i am living with this and am on zoladex to stop growth but side effects are not too good xxx
Hi, Yes I have read the whole thread and was very excited (I was up past 3am reading!) to see others with this. I was trying to register there but I can't figure out where to go to do that. I e-mailed the moderator but haven't heard back.
hey i have also been on zoladex and as u say has its own problems being so young they are now getting reluctant to use it cause of the problems it may cause on your bones but they are thinking off introducing add back therapy, something they use with people who have endometrosis after having zoladex, i am due to go back into hospital for another routine op on nov 8th, mine is along my vaginal wall and also edging its way into my bum muscle and grows alonside my bowel so worry all the time, but still keep my hopes high and something will work before they have to consider the radical surgery, please keep in touch everyone
i am only 27 now and have been suffering with this for 5 years now, i am the youngest that we know to have it in this country, the thought of losing everything scares me to hell, but have a little girl to think of and if for some reason they have to do it i will have to cope with it, if there is anything u want to know feel free to ask
