Monday, April 11, 2011

Another Opinion

When I last left all of this, I had an appointment with a specialist in Portland at St. Vincents to discuss my "What do I do now?" problem with taking Tamoxifen and swelling up like crazy. I had that today. I walked away more knowledgeable and more scared - not a great combination.

I learned I have a 20% recurrence rate without Tamoxifen and even if I would have done a lumpectomy, radiation and chemo my recurrence rate would still be 20% without Tamoxifen. Since having a mastectomy I am likely not to get the cancer in my breasts (not much tissue left), but rather brain, lungs, liver, and other organs. 20%.....pretty high if you ask me. And no way of testing for any of it - no bloodwork, scans, other tests - just a wait and see. Are you kidding me? Wait for it to strike? No prevention? What now? 

My options are do nothing, get back on Tamoxifen or we try an aromatase inhibitor. The Evista that Dr. Lee suggested does not have a great track record for stopping recurrence and the doctor concurred with my findings that it isn't the best option. So glad I made this appointment.

Aromatase inhibitors are meant for women that are post menopause. I am 36, I am not post menopause, not even close.....medicine can do some amazing things. My five year strategy - a shot every month in my belly to trick my body into menapause and a pill everyday to trick my cancer in to staying away. Plan sucks....but my risk of recurrence is down to 10%.....I like that number better. Could be more side effects to deal with too, but I am no stranger to that...bring it, I will survive it, although I am sure there will be some grumbling. Not sure when it all starts, but my doctors will let me know.

Jeremy and I left with a plan, got to the car, and I cried and cried and cried. I never really had anyone tell me about the possibility of other cancer spots it could appear - my brain and lungs. That is a slow death waiting to happen. And no prevention, just six month check ups. Not sure what that does, but something I guess. This is the time that I become very in-tune with my body and listen when something feels life depends on it.

1 comment:

  1. What a terrible choice to have to make, Steph. I know when I hear that 'distant recurrence' meant Stage 4 liver, lung, bone or brain cancer, it put Chemo front and center for my treatment, even though all my life I'd been sure I wouldn't do it. Ever. So what pill will you be taking for 5 years? Keeping you in my thoughts and sending you strength.