Last Wednesday, November 3, Mark and I met with medical student Melanie El Hafid at Princess Margaret Hospital who shared the results of my latest CT scan which I had on October 27. The ganglioneuroma did not increase in size and it appears to be the same shape. There were no odd growths or lobes to the tumour which might suggest cancer. I am glad that these consultations are becoming routine and as long as everything is the same as four months since my last scan then I am happy. I asked Dr. Swallow, whom I was happy to get to see and talk to this time, about the contradictory assessment I received from two successive visits: Dr. Adams-McGavin made it clear that the tumour would likely continue to grow, while on my following visit, Dr. Elsolh told me it wouldn’t. Dr. Swallow said that there weren’t enough cases in the medical literature documenting patients whose large tumours were left in the body. Without her saying so, I can imagine that since most of the cases involving large ganglioneuromas occur in the US, doctors there would be more likely to recommend surgery. Thus there would be no need to monitor the tumour growth in those patients. Dr. Swallow’s recommendation was for me not to undergo surgery, and among those of us who are living with their tumours, not enough is known. I did feel as if I was being treated as a test case for leaving the tumour in. Dr. Swallow told me that, by coincidence, she was attending a conference on the very topic of ganglioneuromas and would tell me all about it at the time of my next consultation.
Dr. Swallow gave me the option of having a second biopsy. She did not recommend it outright yet said that if I wanted it done, she could easily arrange it. With the biopsy option presented in this way it sounded as if she was leaving it up to me to make my own personal assessment whether I needed it done. She also stated a panel of doctors could review my scans and make a collective decision on whether or not I should have it. I agreed to this option.
Melanie said she would call me back a week later–which was yesterday–to let me know the panel’s decision. It surprised me to hear that the panel, which comprised twenty doctors from many disciplines, recommended I get the second biopsy. I honestly was expecting her to tell me that they didn’t think the procedure was necessary. I hope they probe different areas of the tumour and not take samples from the same place as last time.
Although enduring the pain of the probing needle and the aftereffects of fainting and vomiting were rather traumatic, I wasn’t afraid of having a second biopsy. If the panel felt it was necessary then I would undergo it. Melanie said that the radiologist could give me something in advance of the biopsy to counter any side effects of the Fentanyl.
Before a biopsy could be scheduled I needed to give a blood sample and on my morning off today I went to a walk-in lab and health services centre to get it done.