Yesterday I had a followup appointment at Princess Margaret Hospital with Dr. Carol Swallow, however unlike during my first visit I barely saw her except when she greeted me as she led Mark and me into the consultation room. She asked if I had seen my biopsy results on-line. I said I hadn’t. I made a conscious decision not to register to see my results in case I discovered a devastating diagnosis. I would not want to deal with that news alone and without a doctor nearby to answer my immediate questions. So I decided to wait until today to learn the results.
Dr. Swallow said that the biopsy showed “pretty good news” and I looked at Mark and we were probably both smiling behind our masks. Dr. Swallow said that she’d send in “Chris” to see us, however we waited a long time before Dr. Chris Adams-McGavin came in. We would learn more later on, but while we were waiting I felt that the biopsy must have showed that I had the least malignant of the three kinds of liposarcomas.
The doctor explained that my tumour was most likely a benign ganglioneuroma and was thus not a malignant liposarcoma nor a benign lipoma. The imaging in the ultrasound and CT scan only suggested a lipo(sarco)ma yet the truth was in the biopsy which proved otherwise. Dr. Adams-McGavin was patient with answering all of our questions and Mark once again took notes, which I know I will have to refer to.
Treatment of ganglioneuromas does not involve surgery. Operations are risky since my tumour is so big–at least 13 cm long–and adjacent to so many other organs. In spite of the location of the biopsy which was on my lower right side, if an operation was performed the doctor said that the incision would be made down my front and would be a lot longer than 13 cm. The operation would pose certain risks of hernia and intestinal issues like bleeding and bowel obstruction caused by such a large amount of scar tissue. In short, the best treatment involves leaving the tumour inside and monitoring its growth and accompanying pain and discomfort. I would continue to have regular CT scans to document the growth of the tumour.
While the consensus before had been that I had a liposarcoma or a lipoma (with the doctors leaning toward the former) they now have to determine that what I have is indeed a ganglioneuroma, as it still could be other things. Dr. Adams-McGavin mentioned what else it could be, but I never pressed him to elaborate on what the other possibilities were and I have since forgotten what he said. Yet the histology, which we did not know before the biopsy, is strongly in favour of a ganglioneuroma. The doctor said that the tumour would grow as I aged, and to my specific question he answered that it was not likely that the tumour would stay the size that it is throughout the rest of my life.
In order for the doctors to make a conclusive diagnosis I underwent another blood test after our meeting. I would also need another CT scan which a panel of doctors would analyze before my next visit in six weeks. This scan, my third, would reveal if the tumour has grown and at what rate. I have received word from the hospital that my next scan is scheduled for Sunday, June 20. The scan can detect the smallest measurements so I will know how much it has grown since my first scan which by then will have been three months ago.
Mark and I left the hospital to sit and talk while he put on his in-line skates. We discovered that when we heard Dr. Swallow report that she had “pretty good news”, we both believed that that meant I had the least malignant of the three kinds of liposarcomas. Neither of us was expecting a benign diagnosis. After hearing from four doctors over two months (the ultrasound interpreter, Dr. Telesnicki, Dr. Swallow and Dr. Roscher) that the size of my tumour strongly suggested a malignant liposarcoma, I did not expect to hear any news to the contrary. I know that the ganglioneuroma diagnosis is not yet definitive yet the doctors are more certain of this now that they have analyzed my biopsy. For two months I have been living in such a depression, worrying about chemotherapy or radiation and a painful and lengthy recovery.
Not even the wrath of Mother Nature could destroy my optimism as my entire walk south on University from College to Front was in the pouring rain. Mark had to remove his skates and take the transit home while I sat in the comfort of a GO bus.