Well the Doctor said it is Semi-malignant.So I asked him what do you mean, Is it cancer or not? He said it is not cancer but acts like cancer and is treated like cancer. The only thing he said about the Tamoxifen is that it could cause uterine cancer if taken over a long period of time and he gave me the option to stop or continue taking it. I do not mean to scare you I just believe we could use all the information we need before we make these life altering decision. That said, Tamoxifen worked like magic for me by shrinking the tumour to where I could barely tell the difference and my uterus is fine. but now that I a have been off the Tamoxifen it is quite obvious that the little monster is coming back. I would have no problem going back on tamoxifen if I have to. No matter what we do there is always going to be side effects.I think these doctors are just as puzzled as we are, no one knows for sure what this thing called AA is capable of.
Best of luck and keep that positive attitude! it sure has rubbed off on me. I was really stressed about this upcoming surgery by I have realised that at this point worrying won't solve anything.
This AA is a real b...... its so rare and the Consultants are so puzzled by it which dosn't help us at all. Having breast cancer and chemo etc whilst totally unpleasant there is still a load of support and help from books, hospitals etc but this, there is nothing and you feel really isolated at times.
Good luck anyway and keep me posted with your news
that is really interesting as my surgeon said that his colleague's opinion was to leave alone until it is bigger and affecting me more. I dismissed that idea as even though I really don't want the surgery I also don't want to have the constant worry that I have made the wrong decision and should have had it removed while it was easy to remove. My surgeon thinks he should be able to take wide clear margins of 1.5-2cm around the tumour which should hopefully give the best outcome, i.e. no recurrence.
I guess as this tumour is so rare it is largely a guessing game for the professionals and each case will be different depending on the initial presentation. My initial reaction to my diagnosis was relief at having a benign condition and then the more I have read this reaction changed to 'it might be better to be cancer as at least there would be a treatment plan and support system in place'. I mostly don't feel like that now, although I do feel like I am on my own as far as finding out information....
we have to remember that there are now 3 cases of mets and death from this tumour. it seems that multiple reccurences were the factor in all 3 cases. I was told at The Marsden that Prognosis is difficult to predict. However i am not having more surgery until necessary, i am on zoladex as tamoxifen didnt suit me, my reccurence is currently 2 cm so not too big to notice.
I am now at home recovering from surgery. I opted to have an epidural as pain relief post surgery which worked well. I also had reconstruction done at the same time. Now I am waiting to hear whether the margins are clear and what the next step is. Surgery wasn't as painful as I had feared and my surgeon had said that he would be very disappointed if my pain was too great post surgery. It is early days still but trying to be positive. I really hope your surgery goes well xx
How is your recovery ? Hope things continue to go well for you. I had my surgery this past weekend which took almost 3hrs my new Doctors believe they managed to get it all out. I was on morphine while I was in the Hospital for the 2 days but i am now on Ibuprofen and percocet for pain management I am a bit sore and swollen with a lot of pain... only if forget to take the pain meds on time, ( and i often forget) lol. I have a follow up visit in two weeks. Stay strong
It's good to hear you are both doing as well as can be expected post surgery, I hope your surgeons both got everything out!
I guess I haven't updated what's going on with me...
I have now had 2 Zoladex injections (One in april one in May) and started Tamoxifin last week. I noticed about 2 weeks ago that my abdomen seemed much smaller so I felt around for the tumor. I could usually feel it especially if I was laying down...I can't anymore! My doctor was amazed by the change and has scheduled me for an MRI for mid July. He is hoping if it has shrunk that they will be able to remove it! EEk!
I have just been back in hospital with a wound infection which wasn't pleasant to say the least! :(I also received the disappointing news that the margins weren't clear. The one fortunate thing is that my tumour has been shown to be highly oestrogen responsive, so this will be something to explore next in order to try and prevent recurrence. At the moment I feel that I have to just concentrate on recovering from the surgery before I can face the next phase of treatment, whatever that might be. Trying to stay positive as there is no way of knowing what the future may bring, so all I can do for now is focus on recovering and getting back to being me.
Would be interested to hear about your treatment with zoladex and tamoxifen, especially what side effects, if any, you have had. Good news that your tumour appears to be shrinking!
