Navigating cancer information, the internet, and a self-defined appropriate use of treatment statistics
Content warning
Most of these posts probably need a content warning. I’ve heard from people close to me, out of a place of love, that what I write can be really confronting and hard to read. I can reassure you that for me, this is a creative and genuinely enjoyable space, and I suspect that that is because I’ve processed these experiences and thoughts well before they make it onto this page. But for you, this is likely the first time you hear about them, or are brought into them so intimately.
I don’t mean for this to be hard, but these are hard things, and hard things are important too.
For those who are close to me, or close to any of the topics I talk about, please be gentle with yourselves. I will try and add content warnings where I am talking about specific things might be particularly hard for some people.
This post talks about infertility and prognosis statistics.
Take care with yourselves; leave this post alone or read it when you are in a quiet space with a cup of tea, if reading about this right now is not what you want or need x
I usually don’t google things about my illness. It’s a self-preservation measure. I did it once, at the start, when I had taken Prednisone at 4pm (a rookie mistake, I know, but you live and learn) and at 3am had exhausted all the options I knew for how to pass the time when your body is exhausted but your mind won’t sleep.
[[ Hot tip for those on steroids, when you can’t sleep but you’re not in the energised high that gets most people up and cleaning the house: Puzzles. Much better than trying to read - too hard - or go for a walk - too stimulating. Looking for that particular shade of red with a smudge of white out of a box of nine hundred and forty-eight unplaced puzzle pieces allows for a type of low-key, time-irrelevant focus that is unmatched. ]]
[[ Side note: On some steroids they say you should not have access to your credit cards, due to the heightened risk of rash decision-making. The one thing mum bought on an early morning / late night - take your pick - online foray was a set of fold-over arm rest covers for the couch, the ones that become like mini tables and let you balance your coffee cup (or wine glass). After the initial regret the morning after, these turned out to be a genius purchase — practical, sturdy, and an inoffensive shade of cream — and they are still on dad’s couch to this day. She was proud of this, in the only way you can be proud of yourself when you really have very little to do with the success of the situation and you’ve actually just been saved by blind luck that you didn’t blow your credit limit on a $5,000 lounge suite to go with the arm rest covers because of your chemically-lowered inhibitions. ]]
However, coming back from the self-indulgence of a good side note: I was on my phone, googling my particular lymphoma sub-types at 3am. I can’t remember what my initial search terms were, but Google inevitably took them, chewed them through its algorithm, and, with no regard for my mental well-being, lead me through a dark passage of suggested results until it offered some alternative, unwanted questions in the “People always ask” section; the one with easy access drop down buttons that give spurious quotes from websites without any care for context. This function can be useful when you are asking for the dates of the Labour weekend holiday this year, but not when you’re trying to understand a disease process and the thing “people always ask” is:
“How long can you live with [insert disease process here]?”.
And, having inevitably clicked on the benign little arrow to reveal the answer, the answer is:
“[Insert confrontingly short life expectancy here]”.
So. This is all to say that I’ve not googled my disease at 3am in the morning ever again.
But, that is not to say that being informed is not a good, and important thing. And for me, at least, it comes with time. I have a rule not to search for information before I know what I am dealing with; medical information and treatment success rates are too dependent on specific circumstances of disease and patient to allow yourself to trust all-in generalisations. Before you are able to sort the applicable from the irrelevant, all they offer is anxiety.
But once you settle in from the crisis of diagnosis, you can step into, and ironically back from this information. And at certain levels, it helps you know how to ask the right questions.
One of mum’s offerings for Living Well is to be informed:
Take responsibility for your health. Long gone is the excuse that makes it ok to leave it up to the doctors. They didn’t sign up to be your nanny.
They didn’t sign up to be your nanny. Some tough love there from across the horizon.
So, recently, after hearing my cancer had relapsed and I needed to go back into intensive chemotherapy - note to doctors: STOP CALLING IT “SALVAGE CHEMOTHERAPY” WE ARE PEOPLE NOT LAB RATS - and a stem cell transplant, I realised in a moment of brutal clarity that it was likely the treatment would make me infertile. The moments when realise you are about to step into some next level shit that requires a new phase of adjustment.
And so, sitting in the car after coming back from the supermarket a week or so after surgery, Mohamed having gone inside, I took a breath and searched:
“Do you become infertile after a stem cell transplant?”
Welcome to the world of googling your illness.
.
[[ Take a breath. Do you need a breath? I needed a breath. ]]
.
But after the initial shock and disbelief that this was about to be my (our) reality, at least this one prepared me with the right questions to ask: “Does this apply to me?”, and “Can we do another fertility preservation round?”
I had had one round of fertility preservation - stage 1 of the IVF process when they harvest your eggs like you’re a frog - in a shocking rush before my first chemo regime. At the time, it felt safe and recommended to freeze my eggs and not fertilized embryos. But reading all the information now, all I found, even in the Leukaemia and Blood Cancer Foundation resource booklets on stem cell transplants, was that egg freezing was ranked not much above experimental.
Holy what the fuck?!
Your “insurance policy” or “back-up plan” feels pretty flimsy when all of a sudden it’s all you’ve got and you’re finding out IT’S NOT YET PROVEN TO BE SUCCESSFUL. I will say, this caused a decent amount of worry, tempered by my much clearer head which reminded me that no, at the time I did this fertility preservation, I made a rational decision based on legitimately positive statistics of success. I even had a friend-who-happens-to-be-a-biologist in the room with me and she had agreed. (Always bring a friend/partner/family member to sense check the information.)
So, what was correct?
Meeting with my haematologist after my surgery, he was ready to get me consented straight into this “salvage chemotherapy” starting in one or two weeks. (This would lead into the transplant, and almost overnight, the snap reality of one very crappy year.) We had to ask him to stop and roll back for a minute.
“Why? You’ve cut the worst part out already, surely I have some time? To harvest some eggs, or just to breathe?” Let us fucking breathe.
Pause interventions are good, particularly when there is actually no imminent danger.
I asked if we could try for another round of fertility preservation before this treatment poisoned me to the point of no return. Thankfully, he felt like we had the time, and we duly went to see the fertility specialist.
The fertility specialist offered more brutal moments, giving me my post-chemo post ovary-removal hormone counts — too low for him to recommend another fertility preservation round; I was so deep in the red of the AMH* curve I was teetering barely above the x-axis. We could do it if we wanted, but it would cost twelve thousand dollars. It was hard listening.
* AMH - Anti-Mullerian Hormone; used as an estimate for ovarian reserve.
These consults are often short and snappy. Sometimes things are said with care and time to explore, and sometimes they’re said with the nuance of bullet points on a to-do list. You learn to listen, hold information in your body, breathe it out, note it down, and flip to the next question you have on your own to-do list that you need an answer to in your allocated 30 minutes. On the flip side, I heard that the information I had read in the recommended and reliable sources was out of date.
“No…”, he said, “it’s certainly not experimental. Sure, ovarian tissue freezing is experimental, we don’t even do it. But egg freezing, no way. Those booklets are about 8 years old…someone’s thinking about updating them, but we don’t have the time. The current success rates for frozen eggs are about 90-95% per batch. For embryos they are about 98% per batch. Unless you were married with a kid already - and even for those people it’s not a given! - we’d have recommended you freeze your unfertilized eggs.”
Hot bloody damn.
What a roller coaster. I tried so hard to read the right information and even then that was wrong.
Don’t get me wrong, I’m so very glad it was wrong. As equally glad I am that medical science is moving so fast that resources like this become out of date so quickly. But the information space for cancer is so hard to navigate through anyway, that it blows my mind that such a fundamental patient resource is, actually, so wrong.
On statistics
I love numbers, but haven’t made my mind up about cancer statistics. This all makes me realise that they are useless to know unless you have the ability to use them to inform a decision**. Statistics without agency just create worry and feed anxiety. And worry is a useless bloody emotion. (Don’t get me wrong, worry is real and debilitating, and I am not immune to it.)
Especially prognosis statistics, a particularly gnarly form of cancer statistic that currently, and thankfully, does not yet serve me. Life expectancy rates are bullshit, because everyone is lumped in together with only their cancer type as their common denominator. And, besides, once you “know”, what are you to do with that anyway? I don’t have a bucket list. Mum was given different prognoses, starting with six months, and morphing into five years, before she stopped looking at them. She used to say she was so far off the end of the bell curve none of it meant anything anymore, so why look? She got eighteen years.
Treatment success rates, though always the thing we ask for, are good if you need to weigh up options, but a waste of time after that. They usually only give you averages, and we know it’s a distribution, don’t we!? You’re only one person in the mass of patients whose outcomes make up that distribution, and your little grain of sand data point could be anywhere in that distribution. They also depend on how long post-treatment they are counting, and are generally pegged by “who is still alive x years after treatment”. I had an 80% success rate of beating this cancer last time and I didn’t. I have a 50-60ish% chance that this chemotherapy + stem cell transplant regime will be successful after three years, if I remember the stats correctly, and the success rates generally go down the further through the treatment hierarchy you get.
Going into this treatment, these statistics are useless to me. (And for the love of all things you hold dear, don’t ask someone who is going through cancer what their prognosis is, unless you are invited to.) What is useful, is figuring out how to live well throughout this year. How to be prepared for if it’s shit, and ready to stay engaged with life and the things that bring me joy and satisfaction, if it’s not. And how to sit easily in the oscillations between the two. I’ve said to my colleagues that all this will likely be one big anticlimax, and next week I’ll be back online turning up to work meetings and weighing in on the Whatsapp chat.
So my hot take on treatment statistics: once you’ve used them to make your treatment choice, it’s probably best to cast them aside.
And then what was it mum said during her book launch?
“Just get on and live.”
** I work in climate change data and information, and this principle applies so acutely there too. Telling someone how the flooding around their house is expected to increased with climate-magnified storm events will just result in paralysis, anxiety or indifference (or anger!), if you have no tools or agency to change your situation.
Postscript
Writing this whole story is making me realise I should tell Leukaemia and Blood Cancer New Zealand (who are exceptional — their patient resources are for the most part excellent, and an NGO, so likely sparsely funded) about the impact of this old advice. If I were you, that’s what I’d tell me to do.
I’ll probably just send them this post.
Thankyou Kate. Your writing is extraordinary and refreshing. You have an extraordinary gift. Not to diminish your gruesome experience. I read and get it.
Thank you for sharing your posts, Kate! What an engaging writer you are and what insight you share! Thinking of you. xx