Out with the old, in with the new... Happy New Year (almost).
This year brought the biggest change to my life. Mainly finding out that I have the big "C", cancer! My motto has been and will continue to be "It could be worse"... why? Neuroendocrine cancer is usually a slow-growing cancer. I say usually because there are times when it is not slow growing. It could be worse if my cancer was almost any other type and had already spread to my liver (as has mine). I may have had this for 5+ years. I know it has not been more than 12 years due to the CT Scan I had back in 2000, which said my liver was fine. It could have been in my appendix or small intestines at that time but too small to see--I am not sure if my primary was my appendix or small intestines. Another thing I need to ask my doc--not that it really matters. I just want to know.
There are tests that can be done on the primary tumor to determine what, if any, chemo it will/will not respond to. I wish I had known this at the time of my surgery and I would have asked them to send my tumor to Dr. Woltering's group at Ochner Medical in Kenner, LA. I think there is still a chance that I could. I am going to ask my oncologist if this is possible. I think it depends on how much of the tumor is available and viable for testing. Dr. Woltering doesn't even charge for this service. He is an amazing man and doctor.
My wish for 2013.... this is difficult. I wish for good health, answers and treatment. Perhaps I should say answers, treatment, good health! Answers to my questions. Treatment for my liver mets, and then good health! I did take a step forward. I called the surgeon's office that I was told about. His name is Dr. Kim. He is a general surgeon but specializes in liver surgery and is on my insurance. I mentioned him in an earlier post (I think). He has co-authored a paper on cytoreduction surgery for both pancreatic and carcinoid patients.
I didn't know if I should call and see about making an appointment now or wait until after my next scan and appointment with my oncologist. I decided to call to see if he was seeing adult patients as I saw that he is now affiliated with Primary Children's Hospital here in SLC, UT. It was the only "hospital" that showed up on my insurance website. I talked to a nurse and she told me that yes, he does still see adults but that his scheduler was out until after the new year. She took my info and told me she would have them call me. Now I need to decide if I should go ahead and see him or wait. It depends on if he will want new scans before seeing me. If he does, I may just wait. It won't hurt (I don't think). If he doesn't need new scans then I think I'll go see him and take copies of the two I've had. I know I shouldn't worry about what my oncologist will think about me seeing him. We did come up with a "plan" on my last visit in October. I was going to wait until after my next scan and then decide. I can't remember now why we were waiting. I think it was partly because I said I didn't want to have any type of surgery until after the new year. I don't know why I worry about what my onc thinks! I'm sure he wouldn't care one way or the other. I'm not questioning his plan or treatment. I need to grow a backbone! We think that doctors are "Gods" and know everything but they do not. Mine has been more than open to anything I have asked or suggested so I'm sure he'll be cool with me taking matters into my own hands (once again).
I do not yet know what my Octreotide level is. I just called the clinic to see if they had the results yet. It's always "leave a message". Last time she called me back pretty quickly but that was when I was having heart palpitations so I'm not sure when she'll call me back. If they are even in today. This way, if it is low, we can up my dosage of Sandostatin for my next shot on the 8th. My oncologist did mention putting me on the pump as an option (if my levels are low). I'm not sure I want to go that direction yet. I need to do more research on it.
I did get my serotonin level checked again. The OB-GYN that I saw ordered it. It is still quite high at 919. Normal levels are 100-243. My level back in July was 1700+ so it is down but still too high. I think this means my nasty little tumors in my liver are still pumping it out (serotonin), which could also mean I'm not at a high enough dosage of Sandostatin as it is suppose to bind to the receptors on the tumors and stop them from producing the hormones. I wonder if this could also be why I continue to have heart palpitations. The serotonin is also what can cause the heart valve damage so we really need to get this down!
My hope for 2013: Find out if I'm a candidate for liver resection surgery or not. Decide whether or not to do surgery if that is an option. Sir-spheres would be my next best treatment option right now. I think if I can
do something about my liver mets, I would feel better about my future... I still feel like I am in LIMBO. Waiting and watching is just not a good fit for me. I need to be pro-active and fight this disease. I also have that looming option of switching insurance carriers come July 1st. If my current carrier will not approve me having surgery or sir-spheres, then I can switch and try to get approved through a new carrier. There are just no guarantees...
This post has gotten a bit long... I apologize if it seems scattered. My thoughts are jumping all over the place today! I will close for now with Many Blessings for a NEW YEAR and may 2013 be better for everyone!
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