Thursday, February 25, 2010
Oh, to have a crystal ball. Wouldn't it be so much easier to make these decisions if we could only foresee the future? Putting my surgery off by 6 months wouldn't change the risk. With LCIS my risk increases 1% each year. The risk is that if I put it off I may never get back to rescheduling it.
I do find it interesting that I am questioning my decision to move forward. When I make big decisions I typically do this type of waffling. I like to know that there is an 'out'. BUT with a decision this big, I was surprised that I am rethinking my decision all over again.
One thing I did do was contact my PS's nurse who is going to connect me with a past patient who had all the same things going on that I do: LCIS, PBM, LCIS and lives a distance for the medical center. I am looking forward to speaking with her. This may be the piece of information I need to feel confident in my decision.
People with LCIS are in a unique situation. We don't have invasive cancer. What we have is a marker for increased risk of breast cancer in either breast with that risk increasing by 1% each year. 20% of in situ cancers are LCIS, so we are not in the majority. I know of lots of people with LCIS (from breastcancer.org), but I don't know anyone else in real life. So a big missing piece for me is talking to a real live person who has had the very same diagnosis as me.
At this point the best matches for me are my BRCA+ friends. They have been so supportive of me and my upcoming surgery. It doesn't matter to them that I am not BRCA+. They know what it is like to be told that you have a 50-85% chance of getting breast cancer by age 80. These women have been inspirational, brave, educational, supportive......the list goes on. They have helped me more than they will ever know.
My online LCIS friends have also been supportive, but still there aren't many of us who have gone down the same road as me.....living hours from the hospital, LCIS, PBM and DIEP. With LCIS, we fall in the middle, we have non-invasive breast cancer which may never spread. We are given our options: 1. vigilant follow-up, 2. vigilant follow-up and tamoxifen and 3. PBM. We are left to choose on our own. There are no advocates for us. We do our research, connect as much as we can and hope for the best.
So, in hoping for the best, I am trying to wiggle away. I want stop thinking about this and get on with my life. I want to focus on my kids, my DH, my business, my life. I have no idea if this is normal, but this is where I am at today. I call it cold feet.