jep wrote:Hi TinaFish . . . I'm sorry that you are struggling and feeling so scared right now. My husband has stage 4 colon cancer and has been fighting since May 2017. I think you have a lot of reasons to be hopeful . . . I'm not sure where you're being treated, but it sounds like your docs are doing the right thing at this point. Do you have someone who attends your appointments with you? My husband jokingly calls me "his secretary" because I keep track of everything for him, and I am also the one who shows up with his list of questions (and I take notes as well). The one thing that we've learned is that every cancer patient's journey (even stage 4 patients) is different and we try not to look at the stats, but to look specifically at his case. One poster suggested a focus on the liver mets . . . have you looked into a major cancer center (not sure where you live) . . . I can tell you a quick story that gave us so much hope in the beginning . . . My mom's boss (and we're talking many, many years ago) was diagnosed with stage 4 colon cancer that had spread to her liver . . . her case was extremely dire and she was told to get her things in order . . . that was until she went to MSK and was treated by Dr. Kemeny . . . my mom's former boss is alive and well today, and she is cancer free. I always keep her in my mind when we hit a rough patch.
I know you posted about colostomy/ileostomy . . . my husband is opting for a permanent colostomy after his surgery in late August . . . he's actually looking forward to it because his bathroom issues have been frustrating (to say the least) . . . he's a very active guy and is tired of running off to the bathroom rather than enjoying life. I can't help but wonder where we would be right now if he had his entire rectum removed (and a permanent bag) during his first surgery . . . can't think that way though . . . stay strong and stay positive and keep doing your research . . . sounds like you've learned so much already . . .
Thank you. You're right - there are so many variables. Does Dr. Kemeny focus on liver mets? I live in Los Angeles, but until two months ago, I thought of myself as super healthy... so I have Medi-Cal as my health insurance. I never thought I'd need to pay out of pocket for better health insurance. You know what sucks? If I got private health insurance now, 1) Medi-Cal would drop me if they found out, and 2) the new insurance company would refuse to cover treatments for a pre-existing condition. They would refuse for one year. So that means that for a year, I would have zero coverage for my cancer treatments. I am, however, in the midst of applying for permanent disability, and if I'm on that for two years, then the state will change me from Medi-Cal to Medi-Care. I thought Medi-Care was only for older people, but I was wrong. And Medi-Care is purportedly much better than Medi-Cal, although I don't know how or why. However, I am hoping to beat this illness before two years from now rolls around...
All of that having been said, I adore my oncologist and I think she's so knowledgeable. I think she's just following normal protocol to treat me right now, and I think a Cedars Sinai doctor would be following the same protocol.