I was clicking through articles on the New York Times site the other night and happened upon this old Well Blog post: How Much Do You Want to Know About Your Cancer? This one really hit home, as last year my mom was diagnosed with oral cancer and it’s something my family and I have asked ourselves for the better part of the past 16 months.
In fact, this central question was a big topic of conversation during a recent trip to mark her one-year anniversary of completing treatment. So let me cut to the chase: after much deliberation, none of us are entirely sure.
The Long Version.
What is indisputable is she needed to know more than she did. Reflecting on all that transpired, this is most evident when it came to follow-up care. On that final day of treatment, my mom gleefully whacked a gong three times to symbolize the “the end” (a nice little ritual her cancer center set up) and was sent home armed only with the vague instructions to rest and hydrate. Although she knew she’d likely feel sick and tired for a few days, she breathed a sigh of relief thinking the worst was behind her. She was so wrong - her darkest days were still ahead of her.
While we are eternally grateful to her medical team for successfully getting her through treatment, we felt they often dropped the ball when it came to communication. That first day when our suspicions were confirmed that she had cancer, her doctor didn’t have enough information to tell her exactly what type of cancer she had (not surprising, and we would later learn squamous cell cancer of the base of her tongue, stage 4a/b), yet he was fairly certain it was not only incurable, it wasn’t even treatable. Our interpretation = death sentence. The following day another doctor told us it’s absolutely treatable and most likely curable, although the tumor was deemed inoperable due to its size. That’s a lot of scary and conflicting information to absorb within 24 hours.
“We’d like to give you a clear map of what your life might look like over the next few months” - NYT
Granted, the NYT article focuses on the extremely complicated and delicate nature of delivering a grim prognosis. But the general theme of striking the right balance in communication between physician and patient is relatable, especially when it comes to having difficult discussions to ensure patients and families can prepare for the future. And at the crux of it, that’s what we felt was missing - a roadmap of what to expect - and that started with her prognosis.
Actually, since those first two days, her doctors never really discussed or clarified it other than to use empty phrases like, “cautiously optimistic.” To be fair, she could have asked them directly and I’ve urged her to do so, but she’s yet to find the courage. I’ve looked into it and the truth is the numbers aren’t pretty, although she does have many things in her favor, including the fact that she was HPV-positive.
Side note: oropharyngeal cancer patients who are HPV+ (yes, that HPV) respond much better to treatment, so much so that there are studies underway to determine if oropharyngeal cancer should be staged and treated differently based on one’s HPV status—perhaps fodder for another post.
We also felt a little in the dark with the whats, whys, and whens of her medical plan. For example, after being told her advanced cancer necessitated immediate and aggressive treatment, it would have been helpful to know upfront that it would likely still be 6-8 weeks before they could start.
Instead we found out in piece meal, as it was deferred for one reason after another (staging, dental evaluations, tooth removal and healing, etc.). They were all legitimate, but with each passing week we became increasingly anxious thinking something was wrong or that they were forgetting about her. Simply providing us with a list of things that needed to be completed prior to commencing treatment with an estimated timeline would have relieved much undue stress. That’s an easy communication fix.
Admittedly, it’s much harder to honestly talk about the significant physical and emotional tolls of cancer and its treatment, especially in detail, as you want to avoid inducing more fear during an already tense time. And as it turned out, no doctor went into the harsh reality of what my mom was about to endure. Sure, she knew she’d likely experience taste changes, a decrease in saliva production, swallowing difficulty, and yes, there was a decent chance she’d get thrush, but that pretty much summed it up.
No one sat her down and candidly laid out how challenging it’d be to cope with treatment. No one warned her about the coughing, choking, mucus, pain, vomiting, depression, burned skin, utter fatigue, and rapid deconditioning of her body and mind. No one properly explained that the side effects would be cumulative, meaning after it was over she’d feel far worse for a long while before she’d start to feel better again (and that some residual effects may never relent).
So when she began to experience these inevitable repercussions, she was terrified. Ignoring or downplaying the debilitating side effects of head and neck cancer treatment didn’t prevent any fear, it just delayed it. She wholeheartedly wishes she they were more upfront, believing her team’s reluctance in sharing the gory details left her ill equipped to ascertain what was “normal” and what was “too much” as her body broke down for weeks after treatment ceased. As a result, things got ugly pretty fast.
But the truth is, I’m to blame too.
I knew better, having worked a few months at this point as a dietitian on the oncology floor at my hospital. While I was no expert, I had already dealt with enough head and neck cancer patients to know what she was up against. But then I’d think, maybe I just deal with the worst-case scenarios, maybe I shouldn’t tell her what I see and know because it may not apply to her. I often felt paralyzed, torn between how to best serve my mom: team daughter or team professional.
On several occasions I hinted at the tough road ahead, gently reminding her it wouldn’t be smooth sailing and proposing specific questions for her to ask her doctors. But she’d become easily overwhelmed, anxious, and shut down, asking to me to speak directly with her medical team, which missed the point entirely. I didn’t just want answers to my questions, I was trying to open her eyes to what her future may hold by fostering a frank dialogue between my mom and her doctors so she could be better prepared.
So I kept asking myself, how far do I push? In the end I left it to the doctors to do the heavy hitting and instead focused on setting her up with services to best optimize her health, even if she didn’t yet fully understand why she needed them. I encouraged her to see a speech pathologist and practice her swallowing exercises, get adequate nutrition while she could by working with her dietitian (it didn’t matter if I had the same advice, she responded better if it didn’t come from her daughter), and urged her to regularly attend her support group. It helped, and she said these resources provided the most specific day-to-day tips for survival, but it wasn't nearly enough when things got really bad.
"This balance, between hope and honesty, remains an uneasy truce in medicine." - NYT
It’s a fine line between too little and too much knowledge, especially when it comes to something as big as cancer, which is why knowing how much information to parse out is such a challenge. And that’s precisely why this article struck a chord with me. I could relate to the doctors’ struggle, as it was hard enough for me to figure out with my mom, someone I know about as well as I can know anyone. I can’t imagine how difficult it is to gauge as a doctor when dealing with a stranger’s personality and emotional state.
It also reminded me that it’s not just the patients and their families who suffer when faced with a devastating diagnosis; the physicians bear quite a burden as well. On top of the immense pressure and responsibility they face in correctly assessing and treating patients’ physical needs, the good ones also consider the emotional health of their patients and families, adapting their approach accordingly. Just like we look to doctors for guidance on a medical plan, some doctors look to us for guidance on determining how much to disclose, when, and to whom.
So while I think we still have some legitimate gripes in the way some things were handled with my mom’s case, maybe we aren’t being completely fair to her oncologists. Maybe it wasn’t a matter of negligence in not having the difficult conversations. Maybe it was strategic. Maybe “speaking the truth, though not necessarily all of it,” was what they thought she wanted and needed.
And it’s true, in glossing over the reality of her impending situation, they enabled her to focus on the immediate task at hand: getting to and through each day’s treatment. It makes sense in theory, as finishing her seven-week course of daily radiation and three rounds of cisplatin chemotherapy required a full mental and physical commitment.
But unfortunately in my mom’s case, the shortsightedness of their counsel and my fear of crushing her spirit left her woefully unprepared for what came next. I don’t think any of us got it right this time. But I’m not convinced 100% honesty would have been the right path either.
And so I keep wondering, if my mom really knew what she was walking in to, would she have made it? Would she have even tried? Would it have better prepared her to handle the low points or would knowing exactly what’s in store have shaken her resolve from the get-go?
I still don’t have the answers. Hindsight can only tell us she needed more information. The real question, is how much more? And that’s still up for debate.