Still deciding...

We met with the radiation oncologist at the CyberKnife center and were not overly impressed with him. He checked his watch at least four times during the 40 minutes or so he spent with us, checked his Blackberry at least five times and answered his cell phone once. He seemed very hesitant to compare CyberKnife with IGRT, especially after telling us that Dr. Yamada is a pioneer in the IGRT field.

He also said that studies had shown that more regular (conformal) radiation treatments at a lower dose results in better pain management for bone mets than a single treatment. Therefore, he was recommending 10 treatments to the met in my pelvic bone vs. the MSKCC recommendation of one treatment. I have since done research that shows that there is not a significant benefit to performing multiple treatments vs. a single treatment, so if we decide to go with the treatment at Riverview, he is going to have to show me his studies. Otherwise, I will agree to no more than five treatments, but preferably one.

With respect to the clivus, he recommended the same number of treatments as with IGRT: five. If they do the other skull met at the top of my head that has been bothering me, that would be an additional three treatments. They may be able to perform them on the same day, but are afraid I would be on the table too long for comfort.

At Riverview, the radiation oncologist works with a surgeon specializing in the field of the met, so we had a consultation with a neurosurgeon on Monday. (In a strange coincidence, he was the same neurosurgeon who examined my dad in the emergency room after he passed out and hit his head back in October 2005 -- a month before he died of heart failure.) We told him we were not impressed with the other doctor and that we felt he hadn't sold us on CyberKnife vs. IGRT. We discussed the advantages that CK has in better targeting the tumor and being able to track movement during the treatment (which IGRT cannot do). He answered our questions competently and told us that he would be responsible for outlining the area of the tumors to be treated with CK. The other doctor would determine the amount of radiation to use and the number of treatments I would have. He assured us that the radiation oncologist was a superb doctor and very competent.

At this point, I think we are both leaning toward CK because of its ability to adjust if I move my head during treatment. If we weren't discussing my brain, maybe this advantage wouldn't mean quite as much, but there is too much to avoid in the brain so the better the accuracy, the better chance of avoiding the brain stem, pituitary gland, nerves, etc. There is also a good possibility that the treatment may be covered in-network. We won't know until the end of this week if the CK will be covered, as Oxford asked the doctor's office to supply additional clinical information. If it is not, it would be treated the same way as the IGRT treatments would be treated at MSKCC -- out of network where Oxford would pay a portion of the cost.

In either case, the plan would be to do all the set up work (new MRI/CT images of my head and pelvis, create the face mask to hold my head in place and the body pad that would hold my hip in place) prior to our leaving for our cruise and begin the treatments as soon as we return. Therefore, I'm going to go ahead with my Doxil treatment on Friday, as I will still have the three weeks off prior to radiation treatment that Dr. K wanted. I will have to wait three weeks after the radiation treatments are finished before having another Doxil treatment. I can continue Zometa infusions during radiation treatment.

So we are getting closer to a decision, but it's been difficult. I can't believe that I'm even discussing having radiation treatments to my brain, but I feel I have no choice. I do believe the tumor has been there for some time, as a comparison of the most recent brain MRI to the one done back in January 2006 shows something in the clivus, although the neurosurgeon thought that the most recent scan shows a stronger signal. This information brings up another issue: it seems my doctors have been reading the radiologists' reports but not looking at my scans. In the future, I will refuse to see a doctor until he or she has actually looked at my scans.

I just spoke with Dr. K, who seems a bit put out that we are seriously considering CK. She is contacting Dr. Yamada's colleague to find out what the advantages are of one treatment vs. the other -- something I have been trying to find out for a week now but haven't had any success in getting the doctor to return my calls. She suggested that if the treatment being in-network was an important issue for us, we should fight with the insurance company to have the IGRT paid in full since it is unlikely there is an IGRT expert in-network who has experience with treating the clivus. Do I really need to add fighting with the insurance company to my plate? Isn't that something the doctor's office should address? I'm about ready to throw my hands up with these doctors. I'm finding all of them more frustrating than helpful.

I'm signing off now so I can let off some steam.