Biopsy Results

No surprises here, the results came back Thursday morning and confirmed what we already knew. The tumor is muscinous cystadenocarcinoma (of the appendix). Dr. Karian called me bright and early Thursday morning to give me the report and to let me know that he planned to talk with Dr. Nauta later in the day. At least that solved my problem of not knowing who/when to follow up with. I placed a call to Dr. Nauta’s office and left a message. A couple of hours later I heard from Dr. N’s administrative assistant who told me that:
1. Dr. Nauta was out of the office for the remainder of the day
2. She would give him my message and he would call me on Friday; and
3. She confirmed that he had seen the pathology and spoken with Dr. Karian
So now I am (still) waiting, and formulating my end of the conversation. Somehow I have to convince Dr. Nauta, a surgeon, that surgery is not my only options at this time.

Pat and I have been doing research and have come up with 2 options that we hope are possibilities for me. They are both radiation based, but much different than the type broad scope radiation I had 8 years ago. One is cyber knife (available at Beth Israel in Boston) and the other is proton beam (available at Mass General). They are specialized techniques and are used on isolated single tumors, which we believe my latest recurrence can be classified as. There are side effects and we are not certain if either technique has ever been used on the bladder, but I’m hoping someone is willing to give it a try. We are still in the very early stages of research and will be counting on my current team of docs to steer me in the right direction. Typically radiation is a no-no for PMP, but I have it on good authority that cyber knife has been used, somewhat successfully on a few cases of PMP. Of course once we find out if this medically an option for me, we start the uphill battle of explaining to the insurance company why this “experimental procedure” will cost them less than another hospital stay.

More to follow…