My surgery and recovery period

My surgery took place on Tuesday November 1^st, 2022, at St. Michael's hospital in Toronto.  The roughly 12-hour procedure went smoothly and still feels pretty incredible given the timeline from a January discussion with my doctor about what I thought were panic attacks, to an October 13^th MRI with radiology report on October 19^th, consultation with one of Canada's leading Neurosurgeons on October 27^th, then wheeling into an Operating Room just days later, with a team of six exceptional doctors whose names I know and some others who made it the success it was.

Image 2:  Before and after surgery

The MRI images before and after the surgery show a near complete resection.  For those unfamiliar with viewing images like these, they’re reversed left-to-right in the same way that in a photograph of two people, the person on the left side of the photo is standing on the right side of the person next to them, from their perspective.  The pathology report documents five samples with a combined volume of about 110 cc, or just under a half-cup for the bakers reading along.  There might have been more tissue removed, separate from the pathology samples, but I'm in awe of the skill and knowledge that allowed my surgical team to remove half a cup of my brain while still leaving me feeling quite intact.

Image 3:  approximate size

Soon after the surgery, I was fully aware of everything going on around me and felt positive about my experience.  I could tell I felt vaguely different but was amazed to feel mostly like myself.  During my post-surgery MRI on November 2^nd, while in the MRI bore, I noticed I couldn't feel or move my left foot – it seemed like it just wasn't there anymore.  Understandably, I panicked while in the narrow MRI bore and discontinued the scan.  This was the first noticeable post-surgery challenge, and I quickly met a physiotherapist and had support from nurses who together helped me use a walker to move around.  It seemed plausible that the time I spent sedated and rolled on my left side contributed to knots in muscles along my left leg where the sciatic nerve travels
to the foot, and that the temporal lobectomy might have shifted other portions in my brain's right hemisphere but without any significant or notable impact.  Since the right hemisphere is responsible for left-body motor control and sensations, and with knotted muscles along the path between my left foot and right brain, I considered this as a ‘connectivity’ problem that I could work on over time and with the help of the nursing team.  The level and quality of support and care both Paul and I had from the whole team at St. Michael’s was phenomenal.  I was cleared to go home by Friday November 4^th, feeling quite well just three days after the surgery.

11/09/2022 - a week after surgery. 

At home, I was mobile but still without proper feeling in my left foot.  I saw a physiotherapist to help with the knots in my left leg, including guidance for suitable stretches and exercises, acupuncture to help with the largest muscle knots, and getting a Transcutaneous Electrical Nerve Stimulation (TENS) device.  I walked daily, often with support from a cane, but kept active.

I soon noticed other post-surgery effects such as headaches unlike any I'd experienced before.  One such headache style was quite active, which felt like it started with hot pools like lava or tar close to my skull with fiery droplets dripping down to the base of my brain, reaching a pool then launching icy javelins back out before triggering what felt like miniature lightning storms.  Often, the headache has been just a deep and dull pain, occasionally throbbing, and sometimes with sharp jabs of pain.  It changed based on my positioning, through the day, and over time as my incision healed.  At more than 425 days post-surgery, I still haven't had a headache-free moment.  At over 425 days of uninterrupted headache, it's now a very low score on any pain chart, where I prefer to think of it now as more of a ‘headfeel’ than a headache.

Just days into January 2023, the full pathology results were available, confirming my cancer as a WHO Grade II Oligodendroglioma.  This means the infiltrating cells are mostly Oligodendrocytes, a type of cell that supports the neurons by migrating between them and producing an insulating protein, Myelin, which coats the long trunk of the neurons.  With over-production of these cells, one can imagine a forest where there's an overgrowth of bark between the trees, and how this might change the way that forest works and feels.  It's not a perfect analogy, but it helps to explain my earlier symptoms.  I know by removing this overgrowth of bark, we had to lose the local trees at the same time, but we've at least delayed or slowed the bark as it continues to grow elsewhere through the ‘forest’ of my brain.

More technically, the pathology showed that the cancer cells have a mutation in the DNA that encodes for an important enzyme in the cell's energy metabolism, through the KREBS / Citric Acid Cycle ⁽⁵⁾.  The enzyme Isocitrate Dehydrogenase (IDH) plays a key role as a catalyst in one of the chemical reactions.  If you remember learning about photosynthesis and the role of chlorophyl in capturing the Sun’s energy, think of IDH as playing a key role in later using that captured energy to run metabolic steps at a cellular level.  My pathology report shows a single point mutation in the DNA of these cancer cells.  At position 394 of the DNA sequence that encodes the enzyme, a Cytosine nucleotide was replaced with a Thymine (reported as “394 C>T” for the genetic sequence mutation).  This means that when the cells with the mutated DNA produce the protein that builds the enzyme, it results in a mutated form of the IDH enzyme.  At position 132 in the sequence of amino acids, an Arginine amino acid is replaced by the amino acid Cysteine (noted as an “R132C” mutant variation in the enzyme).  It changes the shape of the enzyme in the active site where the enzyme does its important work, which you can imagine it as like changing the shape of the main working site of a tool or machine that would be used as part of a manufacturing step in a factory.  More on this later, as I explain why I'm excited about therapeutic opportunities that take advantage of this.  In my case, the mutations in the cell lineage include a full loss of parts of two chromosomes: my 1p36 and 19q13 codeletions describe the loss of a part of the long arm of one copy of chromosome 1 (as described by 1p36) and a part of the short arm of one copy of chromosome 19 (19q13), which can in turn guide future therapy and predict therapeutic success likelihood.  The genetic details here give me hope for future treatment options, which I’ll talk more about soon…

In the weeks following surgery, I developed ‘night screams’ where I would awake from sleep with a loud guttural scream which was rather unpleasant for both Paul and me.  My headaches became highly motion- and vibration-sensitive such that a car ride, bus trip, or similar would send spikes of pain through the right side of my brain, which dissipated as the bumps and vibration stopped.  While my night screams decreased, they returned as smaller grunts and yelps in the nights following travel.  For about nine months after my surgery, travel also meant I struggled to form memories of daily events.  At times, I struggled even with real-time memory, where I had difficulty remembering details of an active conversation such that I often didn't know what topic we were discussing or why or how we arrived at where we were. I did not recover easily from changes in topics, interruptions, or in fast moving conversations, to the point that a small change in topic or direction would erase the entire conversation from my short-term memory.  I noticed that while I could hear well from my right ear, I struggled to recognize the sounds as words or sentences.  It is easy to begin attributing these symptoms to the area of my brain impacted by my cancer and removed during surgery – the symptoms map to the functions of the Temporal Lobe and seem logical based on the healing my brain was undertaking post-surgery.  I feel lucky that as a right-handed person, my brain’s left hemisphere is dominant, so it was quickly able to help accommodate for the portion of my right brain we had to remove.

Standing next to an MRI, excited about my next scan. 

I found simple ways to adjust to these changing experiences.  I wrote a daily journal, making note of what I did each day, who I saw and where I went, how I felt, and anything else worth capturing.  Each day I studied the previous day's notes, and each week I reviewed the weeks and months prior. I approached it like I approached studying a new course, where with repetition and focused review I could study my own days to help build my memory.  I found YouTube videos where I could study the different MRI scan sequences and sounds ⁽⁶⁾ so I could grow excited about the time spent during each scan.  I quickly learned to recognize the sound of the T2-FLAIR sequence I knew would highlight cancer progression and grew my fascination of the small noises that hinted at the physics taking place around me.  I walked daily, using a cane when I needed it to compensate for changes in my left foot, and listened to conversational podcasts using only a right earbud so I could re-train my brain to better interpret language in sound coming from my right-hand-side by varying speed and volume and introducing background noise.  These won't be standard approaches for all.  I found by matching my symptoms with the function of the impacted brain region(s), I was able to make adjustments that helped me feel closer to normal each day, and to re-build aspects of my daily life to closer reflect my pre-diagnosis self.  I'm still not 100% in busy or noisy environments, or fast paced / multi-topic discussions where I still can’t keep pace, but I can get by with only minor and limited impact to my normal day-to-day.

A diagnosis like Grade II Oligodendroglioma (OD) comes with a discussion about prognosis, and much of this discussion continued after I was referred to a team at Sunnybrook hospital.  I now see a Neuro-Oncologist and Neuro-Radiologist who are two of the authors of Ontario’s guideline for treating Diffuse Astrocytic and Oligodendroglial Tumours ⁽⁷⁾.  I've not been told anything like “Stuart, you have x years left to live”, but we've spoken about the overall prognosis with a “median survival time of 10-12 years and 5-year progression-free and overall survival rates of 51-83%.” ⁽⁸⁾ and similar numbers which vary by data and reporting source⁽²⁰⁾.  I know this means that of the tens of thousands of people diagnosed with OD each year, approximately half will survive up to 10-12 years while the other half will survive longer.  We’re focused on Progression Free Survival (PFS), where up to 50% of those diagnosed with a low grade Oligodendroglioma can ‘enjoy’ five years or more before the cancer progresses and requires further intervention.

These statistics don't say anything about my expected lifespan, instead they describe the tens of thousands of people like me, without accounting for the specific details of my case.  They physics-educated side of me sees this as a binary duality, in that it will either be 100% likely or 0% likely that I'll survive to any given lifespan or before my disease progresses further, and like a Schrödinger’s cat situation, both possibilities exist until that future date when we'll learn for sure.  While a possible 100% chance of surviving to a specific age remains, Paul and I remain focused on that potential, and on getting the best quality of life we can while living in our PFS period.

The current therapies for OD include a radiation first approach, followed by decades-old antineoplastic agents that interfere with cellular synthesis of protein, RNA and / or DNA.  These approaches typically come with adverse impact to surrounding brain tissue leading to early onset of dementia and can induce cancers elsewhere in the body.  With advancements in Adaptive Radiation Therapy (ART) ⁽⁹⁾ such as the Elekta Unity MR-LINAC at Sunnybrook hospital in Toronto ⁽¹⁰⁾ and similar machines at other hospitals ⁽¹¹⁾, radiation doses can be more selectively targeted, but impacts remain.  Since my surgery removed a high proportion of my original tumour, my current symptoms are more related to healing from the surgery instead of from new tumour growth.  My symptoms are manageable without significantly impacting our day-to-day: uninterrupted ‘headfeel’, continued numbness and unusual sensations in my left foot, and additional effort needed to form new memories and to remain present in conversations.  We chose to continue serial monitoring via MRI and pay attention to any developing symptoms before any next therapeutic intervention so we can postpone the negative aspects they will bring with them.  We’re enjoying our current PFS life and hope to prolong the Time To our Next Intervention (TTNI) while enjoying a positive quality of life.  Next, I’ll talk about some incredible and inspiring developments that make me think it's an ideal time for anyone living with a Low-Grade Glioma diagnosis.

Works Cited

5. Thauer, R. K. (1988). Citric-acid cycle, 50 years on. FEBS Journal, 176(3), 497-508. Retrieved 1 4, 2024, from https://ncbi.nlm.nih.gov/pubmed/3049083

6. MRIPETCTSOURCE. (2022, Nov 14). Exploring Brain MRI Scan Sounds and Protocols. Retrieved from YouTube: https://youtu.be/Pxw2ZpGp5AM?si=E55v58md66FXbYz9

7. Das, S., Durocher-Allen, L., Hawkins, C., MacDonald, M., Perry, J., & Sahgal, A. (2022, August 9). An Endorsement of the ASCO-SNO Guideline on Therapy for Diffuse Astrocytic and Oligodendroglial Tumors in Adults. Guidelines & Advice, Clinical, Ontario Health, Cancer Care Ontario, Toronto (ON). Retrieved from https://www.cancercareontario.ca/en/guidelines-advice/types-of-cancer/54246

8. Tork, C. A., & Atkinson, C. (2023). Oligodendroglioma (Updated 2023 Aug 28 ed.). Treasure Island, FL: StatPearls Publishing. Retrieved from https://www.ncbi.nlm.nih.gov/books/NBK559184/

9. Hyer, D. E., Cai, B., & Rong, Y. (2021, June 18). Future mainstream platform for online adaptive radiotherapy will be using on-board MR rather than on-board (CB) CT images. Journal of Applied Clinical Medical Physics, 22(7), 4 - 9. doi:10.1002/acm2.13352

10. Sunnybrook Health Sciences Centre. (2019, July 23). MR-Linac receives regulatory certification from Canadian Nuclear Safety Commission. Retrieved from Sunnybrook Health Sciences Centre: https://sunnybrook.ca/media/item.asp?c=1&i=1951&f=mr-linac-cnsc-certification

11. Oncology Transformation in Nova Scotia: Optimizing Processes with Novel Technologies. (2023, December 14). Retrieved from Varian: A Siemens Healthineers Company: https://www.varian.com/resources-support/blogs/oncology-transformation-nova-scotia-optimizing-processes

20. Visser, O., Ardanaz, E., Botta, L., Sant, M., Tavilla, A., & Minicozzi, P. (2015). Survival of adults with primary malignant brain tumours in Europe; Results of the EUROCARE-5 study. European Journal of Cancer, 51(15), 2231-2241. doi: 10.1016/j.ejca.2015.07.032 Retrieved 1 3, 2024, from https://sciencedirect.com/science/article/pii/s0959804915007121