Hi I have recently been diagnosed with an aggressive angiomyxoma and have just had a surgery date confirmed for next month. My tumour is relatively small and the surgeon hopes to be able to take a wide clear margin in order to minimise the chances of it coming back. I have read about others experiences and as much literature as I can bear but would really value an opinion about what I should be asking my surgeon beforehand and what is the best follow up option afterwards. Thanks
Welcome to Cancer Chat. Good luck for your operation next month. I hope one of the members who posts on this thread will be along soon to offer you some advice.
Hi, where is the tumour? I'd just want to know if they can take it out in its entirety without affecting any other organs. Mine unfortunately is in the connective tisssue of the bowel, bladder, womb etc so its very difficult to remove. These are slow growing tumours, I've had mine 27 years but they have never managed to remove the whole tumour.
Good luck with your operation and hope it goes well for you
Hi, the tumour is in my vulva and the surgeon thinks he can take it out completely as it is relatively small without affecting any organs. He is also hoping to take wide margins in order to prevent recurrence, but from everything I have read that doesnt seem to be any guarantee that it won't grow back. Are you on any treatment to keep the growth under control? My surgeon has mentioned hormone manipulation, but not entirely sure what that would mean to me.
Hi, they put me on Tamoxifen for a while but it didn't work (ironically I will be taking it again soon as I am having treatment for breast cancer), Because they couldn't take out the whole tumour I have had reccurences (i had 3 ops). The last operation was 19 years ago. I still have the tumour, I do get discomfort because like you it is a sensitive area, but I'm ok and have learnt to live with it. These are very slow growing tumours so I think you will be ok especially as they think they can get the whole tumour out. Good luck and I will be thinking about you. Please let me know how it goes.
I've got an MRI (between chemo for my breast cancer) as something has shown up on a recent scan regarding my tumour, (the angiomyxoma) so really hoping it will be ok
My main issue is that it isn't causing me any discomfort or affecting me in any way at the moment and I know I am going to feel worse after surgery than I do now. But I also know that if I do nothing it will grow and eventually cause me problems in ways that I probably can only imagine at the moment. So given the choice of a chance to be rid of the whole tumour or sit tight and wait and potentially end up with more life changing surgery I feel that there isn't really any viable option other than to have surgery now. I am scared of the surgery and how it is going to affect my life, will anything ever be the same again?
I don't want to sound trivial but you are in great hands and the surgery will be fine. I know how worrying it is I've had a lot of operations but always, touch wood bounce back and it is amazing how your body heals. Please try not to worry about the future. At 29 before I got married (months before) I was told I would need radical surgey to remove the bowel, bladder etc and we went to see the Consultant and asked for a rethink. I am still here touch wood with my bits intact!
Best wishes and I am thinking about you and sending positive thoughts.
Hi Titch, Sounds like my tumour is located in the same spot as yours and is also relatively small. I took Tamoxifen for over a year and it worked by shrinking the tumour. However after I've been off the tamoxifen for 9 months it has reared its ugly head again. My Doctor gave me the option to start the Tamoxifen again or Do nothing and says surgery would be a last resort for me due to its location. I sought a second opinion and this other Doctor thinks that surgery should have been my first option as he would rather get it out before it grows any bigger. I happen to agree with him. He believes he will be able to get it out.I am scheduled to have surgery the end of May. Fingers crossed all will be well but I am very nervous.
Hi Susannie, You seem to have gone through a lot and yet you are so positive. I admire your strength. I first noticed my tumour around age 29 but never got diagnosed till a few years later as they thought it was a bartholin gland cyst. It was only after seeing about 3 different doctors that 1 finally took me serious.
Hi, is yours a malignant tumour? If not you've given me hope as I'm going on Tamooxifen again this time for breast cancer and I'm thinking maybe this time it could work.
