Brilliance comes in the form of a 60 year old Irishman with 30 years experience in Gynae Oncology under his belt and a wicked sense of humour. He can deliver bad news and make you laugh about it. That is the definition of brilliance.
He warmly greeted me with a “Hey, I finally get to meet you! You are famous, but boy what a way to be so!” and the bantering commenced as though we were long lost friends. He climbs the Andes to raise money for research and splits his time between the Women’s and Peter Mac.
After he introduced me to his medical student / intern, the first question asked was with regards to the bHcG and the tumour prior to the Hysterectomy.
His beautifully educated answer with a dash of wit was: “We don’t know”. That is the upshot of it.
“We don’t know how this tumour is going to go. We don’t know how it behaves, we don’t know how it will react.” Currently it is what the doctors call “pre-maligant” and at any stage and any time it can become metastatic. Will the bHcG tests pick it up – “that’s the plan but once again, we don’t know how it will act.” If the tumour turns into a choriocarcenoma the bHcG levels will technically rise. In addition to the tests there will be an MRI scheduled every 6 months. If the bloods don’t pick up any mets, then the MRI will, well, should. Technically.
Currently, the issues are more “Hysterectomy” related rather than tumour based, for now. When I asked the difference between the MRI and the PET, the simple answer was “radiation”. “Oh medear, you are up for a long process of testing and monitoring, the less radiation we expose you to, the better.” Oh and your pregnancy test came back negative :)
I left his office with a big bear hug.
Sometimes we don’t always have the answers, sometimes it isn’t always a open and shut case and sometimes we can be pleasantly surprised. Slowly, I am becoming prepared. For the longevity of the testing process, for the 1000’s of injections for MRI’s & blood testing I will endure during this process, for the frequent trips and the monitoring. Because sometimes, we don’t always know. We don’t always have the answer to the questions. As my wonderful Oncologist said “You would like me to tell you that we have a cure, that we have the answers and that we can treat this trophoblastic disease satisfactorily – I don’t know. We don’t know.”
So what happens when 30 years of international study, work experience and research, not to mention countless hours of reading journal articles, published work and years of anecdotal evidence, the most wonderful, brilliant, expert in the country “doesn’t know” and no matter where you turn, what you Google, there is no answer. You have run out of information and of experts What then?
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