Tuesday was the day, when the all too familiar symptoms came back accompanied by the sick feeling in the stomach, the very same one which lead me to have a Hysterectomy to begin with and in turn result a tumour diagnosis.
I arrived at the Hospital early Friday morning (yesterday) prior to a Professional Development day scheduled for work. Up to this point I had dismissed the symptoms as inconsequential but "better check it out in case" as I had a system in place and there was nothing to worry about. I had telephoned the day before and had a chat to emerg doctor (to determine whether indeed it was something to worry about) she in turn called down my very thick and substantial file from Onc. and asked me to come in.
The conversation in Emergency on Friday morning went something like this:
"Its not uncommon for tumours similar to yours to spread however I am confident that it hasn't because of your bHCG blood testing" ( follow up conducted every 4 weeks) "However I will ask the senior doctor to examine and we will run some tests".
My instant mental and internal reaction was - "Houston, we have a problem".
"Out of curiosity" I replied calmly. "Could you please check my file for the last blood bHCG test prior to the Hysterectomy. One was taken on the day or the next available. I would be very curious to see what the result was." (Elevanted bHCG hormone means you are either pregnant or you could possibly have gynae / reproductive issues such as cancer, abnormal tissue etc - the same hormone marker also present in men with testicular cancer (that's how Lance Armstrong found out he had cancer - bHCG was in the 10's of 1000's)
The result of a test conducted in May two months prior to surgery came back "normal".
The tumour that was found in biopsy two months later went undetected.
My mind busily started to make very rapid calculations: So, if the bHCG two months prior to Hysterectomy was less than 2 (which is normal), it didn't pick up the tumour as the biopsy and immunohistochemistry and pathology reports would indicate...
Then, the million dollar question:
"If there has been a spread (mets) between Peter Mac PET Scan conducted in September and now, February 2010 (5 months) - would the 4 weekly bHCG blood tests pick it up?"
A quiet pause then her response: "That is a very good question." and "I am glad you are seeing your Oncologist on Tuesday"
Not exactly the answer I was looking for. She hastily responded with "it doesn't look like a tumour so I don't think there is anything to worry about. I am worried that you will go home and spend the weekend worrying."
No I am not worried. Quietly furious? A little. Outraged? just a smidge. Somewhat in disbelief - very likely.
Of course, we like to speculate because we humans must have the answer to everything and my mind is far too busy, hence my blogging and virtual chat to you. We don't like gaps and we like the jigsaw puzzles to fit together. Life somewhat is never that neat is it?
The other possibility was that the tumour indeed was not present in May, two months prior to the Hysterectomy. However, if it was not present and it grew in two months, it could be suggested that it is rather aggressive for it to 'grow' so quickly. My feeling is that it was not aggressive as the PET Scan @ Peter Mac would have detected mets back in September. In my mind, the arrow is pointing towards the fact that it may have been missed by the very blood test that is being used to detect recurrence.
The Oncology appointment with the leading Professor on Gynae Onc is on Tuesday arvo, in three days. Is the current monitoring for recurrence sufficient now? (methinks not). Is Adjuvant Chemotherapy (Chemo used as a preemptive strike) now a possibility? What other tests and treatments are available for this very rare tumour? These are the questions that I am currently asking and will be asking on Tuesday.
I did go to my professional development day on Interactive Digital Media and made it it time for the 10am start. I was proud that I lasted until 2:30pm before my mind was more interested in thinking than listening.
"Such is life" said Ned.
Looking back, through the earlier stages of my cancer journey one initially wants to sell up everything and take the kids to Disneyland. This time around, you want to quietly pack your suitcase with every piece of arsenal you can find to fight the sometimes unseen enemy and to stick around for a while longer.
My journey continues, one step at a time. No regrets. Grateful that I am allowed to grow both in mind and spirit. My soul is intact. The climb may be steep and seem somewhat insurmountable, but its not impossible.
Finally, Happy Valentine's Day to everyone - not a day goes by without giving thanks for the wonderful people in my life. You.
Cancer Council NSW would like to acknowledge the traditional custodians of the land on which we live and work.We would also like to pay respect to elders past and present and extend that respect to all other Aboriginal people.