Well, I had my 6 month CT scan and saw oncologist today. Unfortunately, the day didn't go as well as I was hoping for. Dezzie has shrunk a little bit. It was 66x59 in the last scan and now it's 64x52. But it's still really hard. He said that could remove it now. But it's my decision. I have 3 choices: stay on tamoxifen, start chemo, or have surgery. They're going to present it to the tumor board again with the updated tests and see what they say. I will see both my oncologists January 2 to discuss the next step. I have lots of thinking to do. He was totally against Nexavar (the oral chemo which is what I was really wanting). He wants IV chemo. It would be done every 3rd week for 6 months and then have another scan and then see. I'm not sure I want to have surgery yet cuz there's still 30% chance of needing a bowel transplant. That's still a high risk. Not sure what to do.
Stay on Tamoxifen and be miserable 24/7? Or start chemo? The chemo would be every 3 weeks. The week I got it, I would feel shitty, then feel good for 2 weeks. Dunno what to do. So many pros/cons to everything.
I am so sick of making decisions. Can someone please just make the decision for me.
I'm just so blah right now. I can't even think right now. I will do another update later after I have a chance to gather my thoughts some.
I found your blog and wanted to tell you to stay strong. It's not easy to go through something so rare with no definite answers. I began my journey back in 2003 and just recently started blogging about it versus journaling. Here is a link to my blog if you are interested. http://mydesmoidstory.blogspot.com/?m=1
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