post-surgery testing program /// part II

If you did not read part I, i.e. the previous post, this post will not make much sense. It's a bit like trying to read the 7th Harry Potter book on it's own...

As mentioned in the recap of part 1, following surgery and the initial biopsy, CT, and tumor marker (blood) testing, there was no immediate need for additional treatment. Despite very high tumor marker levels in my blood, the biopsy and CT scan seemed to suggest the cancer had not spread and had been removed via surgery just in time, with low probability of recurrence.

Nonetheless, we still needed the tumor markers in my blood to come down to know for sure if I was cancer free, and so I began a period of active monitoring: regular tests to measure the rate of decline. As described in part I, the two markers of most interest (AFP and β-HCG) needed to continue dropping until they reached normalized levels.

The routine was simple, roughly every 7-10 days I would go to the Urology ward of the hospital, have blood drawn, and wait anxiously for the results to be available. Normally results came between 6 - 24 hours later depending on the lab processing times and my doctor's availability. Initially, I would come into the hospital to discuss the results, or have a phone call. But after a couple of weeks we moved to email for convenience. No matter the communication medium, this routine created a lot of anxiety, for me, my then-fiancée, and my family. Constantly watching my phone or refreshing my email during the anticipatory buildup to the news was hardly healthy. I discussed this with a counsellor provided by my company and tried to install some measures to reduce the anxiety - not allowing myself to check my email more than 2-3 times a day, etc. But it was always easier said than done.

GOING GOOD

The first couple of weeks, the results were amazing. Both tumor markers were dropping well within - or even outperforming - the predicted range. Being a finance geek, I started plotting the progress on charts:

My actual tumor marker levels (or inferred levels based on extrapolation where data wasn't available) are shown by the blue line. You can see the rapidly growing levels before surgery in the graph of AFP above.

The β-HCG data during the diagnosis was a bit wonky, so I excluded it and only showed the testing data starting after surgery:

For both AFP and β-HCG you can see the aforementioned precipitous drop off after surgery.

Visually, the target was clear: the blue line (actual results) needed to keep dropping, ideally within the range of the black dotted lines (expected results range based on typical half life of each marker) until reaching the green line (normalization). If that played out - I would not need additional treatment and would be considered in remission. If not, and the markers leveled out or started rising - bad news. It would indicate that there were cancer cells still alive and kicking inside me somewhere, necessitating additional action (chemotherapy, etc.). But - since my CT scan after surgery came back clear, there was no reason not to believe that the results would follow the trend and normalize. And if you look at the AFP graph in particular - the normalization would occur 2-3 weeks before our wedding in Portugal, miraculous timing which would create even more cause for celebration at the wedding, followed by 3 months of travelling the world for our honeymoon with an even greater zest for life.

A fairy tail ending to the story! Reality however, looked a bit different.

NOT GOING SO GOOD

The turning point is extremely vivid in my memory, and came while I was in London for a business trip after having blood drawn on June 21, 2024, a few weeks after surgery. I received an email from the doctor:

Hi Mr. Porta,

I'm sending you the file in the attachment.

I couldn´t reach you by phone.

...

But the markers worry me a little.

The ßHCG is rising a little and the AFP does not fall as expected.

This is no reason to change our plan, but we must continue to monitor.

...

Best,

Dr. __

I left the networking event, opened the attachment showing the results and called the Doctor back immediately from a quiet side street I had found near the event. Indeed, my AFP decline had flattened somewhat, and β-HCG had started to rise. The Doctor explained that despite the clear CT scan, the likelihood was that I had "micrometastasis" - spread of cancer cells into my lymph nodes that was had not enlarged them enough to show up visibly in the CT images. Not such a common occurrence, making me unlucky, to say the least.

Nonetheless, he indicated this was just one data point and we needed to clearly establish a trend over time before taking further action. Three data points, i.e. two additional tests over the coming weeks would be needed.

The news was devastating and set off panic about what it meant for me long term, but also short term with the wedding and honeymoon. Going through the permutations and combinations of what might get cancelled and when was extremely grim.

We hoped against hope that it was just an erroneous blip in the results, and that next week the results would turn again in our favor. But, the results continued their shift in the wrong direction in the subsequent weeks (see graphs below), with AFP also starting to rise. This made the path forward relatively clear, though timing and details less so. The rising levels would be paired with another CT scan in the coming weeks to try to identify where the cancer had spread. Then - chemotherapy. At least three cycles (more on what that means in the chemotherapy section) lasting just over two months. The main question then became - when to start, and did we need to cancel the wedding?

If the tumor markers "exploded" - the doctor said he would push to start chemotherapy as soon as possible. If not, maybe there was some flexibility to delay for a few weeks. In the end, we were lucky enough that the markers continued rising but did not indeed explode, and so we were able to go through with our wedding. The 3 month honeymoon however, was definitely off the cards and would need to be postponed. We would have to come back as soon as possible after the wedding to start the chemo program.

FINAL THOUGHTS

I've said many times that my cancer journey was a rolller coaster. The test results turning against us was a huge twist in the ride, and one of the hardest to process. I would argue it was even harder than the initial diagnosis, probably because I had gotten way too far ahead of myself with optimism based on the early test results, which then required a huge reset of expectations.

The most near-term of expectations that needed resetting was of course the postponing of our honeymoon. We were just weeks away from embarking on a trip we had been planning and saving towards for years. Having 3 months away from work to also disconnect and reflect was also something we were really looking forward to.

Long-term, my partner Joanna and I also had to manage our own expectations about what it would mean for our family plans. We had a neatly laid out plan to return from the honeymoon/sabbatical and immediately begin trying for a baby. With the chemo program + recovery period, then eventually our rescheduled honeymoon/sabbatical if all went well, at the very least this plan would be shifted back. But the side-effects of chemotherapy also meant natural conception would be difficult, and the daunting prospect of IVF treatment and/or not being able to have a biological child of our own also needed to be processed. This was incredibly difficult, to say the least.

At the same time, I am so grateful that we at least got to hold our dream wedding weekend in Portugal, tying the knot surrounded by our friends and family at the most beautiful Portuguese wine estate, followed by a blowout party on a catamaran in Lisbon's harbor at sunset the day after (not to mention my wife DJ'ed and the boat was surrounded by dolphins... for real). I've tried to find as many silver linings from this journey as I can, and that weekend is an easy one. The fact that the wedding was so nearly cancelled, that chemo was waiting for me back home with life looking pretty bleak the next months, and the general feeling of "YOLO" underlying the wedding due to my situation - I think it made everyone party an extra 50% harder. I know I did :)