Hi Kate,
Welcome to the forum...so sorry to meet yet another young woman with this disease. For what is supposedly a rare condition there are many women out there with it...my sister is one of them, she was dxed at age 49, which, though older than you, is still quite young to get any kind of cancer. I lost another sister to inflammatory breast cancer, she was 46, and I was dxed with invasive breast cancer at age 43. I know what you mean about early menopause, as that was one of my treatments. A mastectomy can in no way be compared to a radical cystectomy, though. I feel I got off easy compared to many of you.
Hmm...how best to live life post-diagnosis...good question we are all busy with. I asked my surgeon at the first post-op appointment, "Aren't you gonna tell me I'm too fat and to go on a diet?" My sister had been nagged quite a bit about being overweight with breast cancer. He only looked at me and said, "Just be happy." That is the toughest thing of all, it seems. In fact, that is simply another term for the state of enlightenment. To reach enlightenment is to be at peace with yourself and the universe and what it's thrown at you so far.
It's said that the universe doesn't send anyone more than they can take. That must mean that cancer will bring out the best in us if we make the most of the experience. That's something I witness all the time.
Being involved in the cancer community renews my courage to continue, takes my mind off my own problems, puts everything into a more realistic perspective and helps me feel less afraid. It's almost a paradox, the more you learn about what-all can happen after a cancer diagnosis, the more empowered you become - not more afraid.
My family history has been my main education, cancer is rampant in my family and we've had more than one worse case scenario. Nothing surprises me when it comes to cancer and although that has a grim aspect to it, it's better than not knowing what you may (or may not) be in for.
As you saw, communicating with others who've been there can be a source of relief.
It's not for everyone, however. Some people who browse this board must surely sign off in total horror, and want to bury their head in the sands....I support those who wish to remain in denial, as well. It's fair enough to leave the worrying to the expert in charge, and that's the traditional way of dealing. I should better phrase that: I support the idea of letting your medical professional be in charge. The caveat would be to have much confidence is his/her expertise. But the fact remains that nobody else has as much at stake in a life as the one living it...
As to your question about scans, I'm pretty sure that the US guidelines would have you getting abdominal CTs every 3 months the first year post op. MDAnderson's site has a good pdf file:
utm-ext01a.mdacc.tmc.edu/mda/cm/CWTGuide.nsf/LuHTML/Sidebar1?OpenDocument
Take care,
Wendy
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