Overdiagnosis?

In my last post I left you hanging with suspense! Well, in this post I have a couple of issues to raise that should quell any after effects of inordinate suspense left behind from reading my last post. One is about overdiagnosis, which I promised to raise again, and the other is about cancer itself and what would happen if it didn’t exist.

So, in her book Natural Causes, Barbara Ehrenreich addresses what she calls overdiagnosis. This is a situation wherein currently powerful imaging techniques can, for example, ‘see’ many more, and smaller, lumps in a person’s neck than was previously possible. The question is then put to the patient: “We’ve found a lump in your neck. What would you like us to do?” Patient, very concerned: “Is it cancer?” Doctor: “We don’t know, but we can always remove it.” Patient: “Well, let’s not take any chances. Let’s get rid of it.” Ehrenreich claims that in seventy to eighty percent of these cases in the US the surgery was unnecessary.

I have my own example of overdiagnosis. I had a parotid gland removed from the left side of my face years ago. There was evidence that it was enlarged, but nothing to say it was malignant. I had a choice to make and opted to have it removed. It was unnecessary surgery. Because of it I was left with insensitivity on the left side of my face and a scar leading from my ear down the side of my neck. It’s a crapshoot. How many people do you think would turn down the surgery?

Recently, Dr. Brian Goldman of the CBC’s program White Coat, Black Art, wrote in his blog about overdiagnosis. He writes that overdiagnosis “means identifying problems that weren’t causing symptoms and were never going to cause the patient harm.” The source for most of his information is a study led by Prof. Paul Glasziou, director of the Institute for Evidence-Based Healthcare at Bond University in Australia. It used data collected over a thirty year period by the Australian Institute of Health and Welfare. The results are quite astounding. Goldman writes:

The researchers found that, in men, 42 per cent of prostate cancers, 42 per cent of kidney cancers and 58 per cent of melanomas were overdiagnosed. In women, 22 per cent of breast cancers, 58 per cent of kidney cancers and 54 per cent of melanomas were overdiagnosed.

Overdiagnosis can arise from overly prescribed testing including screening tests like mammography. Increasingly sensitive imaging equipment can detect smaller and smaller lesions and tumours, benign or malignant. It’s often difficult to tell whether a tumour is benign or malignant. In the case of kidney cancers, invasive biopsies are not often carried out for fear of spreading cancer cells to adjacent lymph glands. So, surgery is a crapshoot. Do we operate or not? The default position is surgery because few people would be willing to take the risk of leaving a possibly benign tumour in their bodies.

To take this even further, Goldman’s blog post argues that even “incidental abnormalities” or cancers that would never have caused symptoms or led to full-blown rapid onset pathological mitosis are being surgically extirpated. We probably all have asymptomatic cancer cells in our bodies that may never result in any health threat because of them.

In the September 11, 2017 issue of The New Yorker Siddhartha Mukherjee is back at it with a thoroughly provocative article entitled: Cancer’s Invasion Equation: We can detect tumors earlier than ever before. Can we predict whether they’re going to be dangerous?

Good question. The gist of Mukherjee’s argument in this article is that two things are required for a full-blown cancer to make itself known which he metaphorically refers to as the seed and the soil. This metaphor he borrowed from a 19th Century English doctor interested in cancer research, Stephen Paget. His idea was that a cancer cell (the seed) would grow only if the local bodily ecosystem (the soil) was conducive to that growth. It could happen that the cancer cell falls on barren ‘soil’ and does not grow and divide. On top of that, on close examination cancer cells could be found that would never produce any symptoms. Some cancer researchers were now becoming human ecologists. Some even began to ask why people don’t get cancer and not just why they do when they do.

In my case, I may have carried the myeloma ‘oncogene’ for a long time but my ‘soil’ wasn’t yet ready to receive it. It may be that it was just a matter of time in my case, age being a big factor, but there may have been others that contributed too to creating the right conditions for my myeloma to go from dormant (smoldering) to active. Now, there’s no turning back for me. The seed has been planted and the hemoglobin garden in my bones is turning into an oncological garden.

There’s a final note towards the latter part of Mukherjee’s book The Emperor of all Maladies that makes me realize how little we know about cancer at this stage and about the process of dying and what that entails. Mukherjee writes:

“Taken to its logical extreme, the cancer cell’s capacity to consistently imitate, corrupt, and pervert normal physiology thus raises the ominous question of what “normalcy” is. “Cancer,” Carla said, “is my new normal,” and quite possibly cancer is our normalcy as well, that we are inherently destined to slouch towards a malignant end. Indeed, as the fraction of those affected by cancer creeps inexorably in some nations from one in four to one in three to one in two, cancer will, indeed, be the new normal—an inevitability. The question then will not be if we will encounter this immortal illness in our lives, but when.” (from “The Emperor of All Maladies: A Biography of Cancer” by Siddhartha Mukherjee)

So, how exactly does the body shut down as it’s dying? Cancer may very well be one (a very important one) of the mechanisms that is ‘natural’ in its role in having us die. Maybe cancer is not the pathological evil that it’s made out to be. What would happen if cancer did not exist? How would we die then? What does it mean to die of natural causes? How can we figure that out? Stay tuned. I think science and medicine have a lot to learn about us yet.

It is all so surreal.

From the time in late September until now, we’ve been living a life tainted with the surreal. At any time I expect Salvador Dali to peak around the corner of the hallway into the living room dangling a fluid clock from his arm peering at me silently from his secure death. I can’t seem to find a solid bit of ground, a place where I don’t have to feel the ethereal presence of the spectre of ‘incurable cancer’. Everywhere I turn all I see is wall with no door inviting me into the light beyond the uncompromising diagnosis of a life sentence with no chance of parole. Some people will argue that there is always a door, one just has to believe in it for it to appear and open. Imaginary doors like that don’t exist in any prison I’ve ever visited so I am left with the only tangible evidence I have and that’s based in the physics of concrete and rebar, and not in my imagination, which I confess, I thoroughly enjoy as a garden of pleasure and delight but which flickers inexorably out of existence like a holodeck program on Star Trek.

It wasn’t supposed to be this way.

We were supposed to retire in 2012 and do a lot of the things we had no time to do while we worked at our jobs. We could go camping in the off season and not during the busy summer season. We were supposed to go on long walks and go out for coffee when it struck our fancy. We could travel if we wanted to. We could get more involved in our community. Well, we did a lot of these things and more. But slowly, over the years, I lost energy. I could no longer accompany Carolyn on long walks. I could still putter around the house and fart around in my shop, but as time passed, puttering became more and more difficult, and then impossible. I knew that there was something wrong. I knew it for a long time. We tried to figure out what was wrong, but we came up empty handed time and time again.

Over the past few months, I became increasingly immobilized. I was short of breath after walking up the driveway. I was in so much pain that I was loathe to move. Then, in utter desperation, we went to see my GP. He ran some tests and from there it was just a matter of time before we got the definitive diagnosis of multiple myeloma. I was gobsmacked! It wasn’t supposed to go this way. But I’ve already written about this in past blog posts. What I have not written about is my new reality, as rapidly changeable as it is.

Most days now, I don’t do a hell of a lot of anything. I spend half the day in bed and the better part of the rest of the day in my recliner. Well, that’s mostly true, but not entirely. It’s strange, but it’s like I have a job again. Weekends are mostly free, but weekdays are taken up with visits to the lab, doctor’s offices, and hospital. For example, this week I have an appointment today with an orthopaedic surgeon in Campbell River at 1 PM to deal with the lytic lesions (tumours) in the long bones of my legs and the degenerative disk disease in my neck. Tomorrow I see the dentist at 2 PM because one of the very rare side effects of one of the chemo drugs I’m taking is a degenerative jaw thing. On Thursday I do the chemo routine again with pills in the morning and a visit to the Cancer Centre at the hospital for my injection and visit with the nurses. I have to check my calendar for next week, but I know that I have an MRI on the 19th.

I expect this will change as my treatments progress, but it will still be that my treatments, office visits, etcetera will be during the week and I’ll have weekends ‘off’. I should have fewer appointments with my GP and even with the chemo crew. Lab visits will still happen frequently so they can monitor what’s happening with my blood. Things will get very routine if all goes well. What we’re aiming for is remission within a few months.

Don’t get me wrong, remission is clearly an important goal. If I get full remission for three or four years that would be amazing. Still, it’s hard to free my mind of the verdict I know will not change. The multiple myeloma may not kill me, but it sure brought to the forefront the reality of my death. I’m almost seventy-three years old. I’ve had a very good life for the most part but I want more.

Today is not a good day.

Yesterday was okay. The day before was fine, but it’s hard to predict from day to day what my day will be like when I wake up in the morning. When I woke up this morning I knew that I wouldn’t be having a good day and contemplated just staying in bed. I try to maintain a modicum of a schedule so I like to get up around the same time every day although over the past couple of weeks my rising time has shifted a bit to the 8 AM side and is less inclined to stick to my former rigid 7:30 AM time.

I know my day won’t be a good one if I wake up from an unsound sleep with my body in full tingle mode, especially if it’s accompanied by the sensation of spiders crawling all over my legs. My reaction to my first cursory assessment of the state of my body is to hunker down, pull the covers over my head, and forget about it. But I don’t do that, do I. No, I get up, stagger into the bathroom clutching my cane in the hope that it will help me maintain my balance, and get myself into the living room where I usually plunk myself down into my recliner. I know I will spend the day in utter exhaustion reluctant to even get up to pee.

This pattern of not knowing until I wake up what my day will be like has been going on for years. That’s nothing new. I have no idea what differences in my daily routines will be wrought by the new chemical soup I will be ingesting in various ways as the oncologists stir up a new chemotherapy routine for me next week. The chemotherapy is bound to throw things out of whack in lots of ways some I can prepare for, some I can’t do anything about. Over the years, I’ve almost gotten used to being restricted in my mobility, but in fairly predictable ways. If I wanted to do something, like attend a meeting or go to a concert, I would know that if I did that I’d pay for two or three days after with exhaustion and pain. It was unthinkable to contemplate attending an event two days in a row or doing simple jobs around the property after a previous day of activity. My life has become less and less social over the years.

Truth be told, I’m a little depressed. The time between chemotherapy treatments has given me time to think, and thinking often gets me into trouble. So, I did an evaluation of my life to date going over high and low points, achievements and regrets. Probably a mistake, but one I’ve frequently made so I’m familiar with it. I even looked at pictures of myself over the years, from the time I was around two years old to quite recently. I thought about the different stages of my life, my time at home with my family, my time away to boarding school in Edmonton, my crazy teen years, working with my father, college, university, marriage, teaching, volunteer work, art, woodwork, etcetera. Then on top of that I overlaid health issues that I’ve experienced. I don’t need to go over all of my health problems here, but I had a few broken bones along with the discovery in the early 90s that I was vitamin B12 deficient and that I would need to inject B12 into my leg every month or so for the rest of my life. The discovery of my B12 deficiency was made when I complained to my doctor about fatigue, brain fog, dizziness, and that sort of thing. In 2002 I had my left kidney removed because I had renal cell cancer. Later I had an appendectomy. Still, I complained of fatigue, brain fog, dizziness and vertigo. There is a high incidence of Multiple sclerosis in my family so we chased that for a while but found nothing. Recently I was diagnosed with multiple myeloma which makes sense of all the other symptoms I’ve been having. I’ve probably had ‘smouldering’ multiple myeloma for years. So, now, I come to this:

I’m 73 years old (very close to it). I have bone marrow cancer, one kidney, B12 deficiency, degenerative disk disease (in my neck), arthritis, and who knows what else ails me. I’m old enough to die as Barbara Eirenreich argues and I’m okay with that, but the suspense is killing me. I’m being told that I could live quite a few more years with a few good ones thrown in there too. Still, I have incurable cancer and old age is coming after me. I’m beginning to envy people who die of sudden heart attacks or massive strokes. They have no time to think about all the things there is to think about.

I’ve discussed this with a friend of mine who also has multiple myeloma and his idea is that he doesn’t focus on his disease at all, or on his age, or any other potential killer. No, he focusses on what needs to be done: the shed needs a new roof, the canoe needs a new skin, baseboards need to be installed, grandkids need hugs. Dying will take care of itself when there is no other option, when it goes to the top of the priority list and refuses to be ignored any longer. I find myself thinking the same way. Yes, I get a little depressed when the extent of the threats to my life are displayed in front of me, but I get over it pretty quickly.

And I think about life and death. They aren’t opposites as we generally think of them. They cannot exist without each other. My life, like the lives of the nine generations of my ancestors who have lived in Canada are blips or interludes in the continuity of time and space. Mushrooms are a good analogue for us, I think. They push up through the ground cover from the mycelium below, flowering for a bit then melting back into the biomass to contribute again to the mass of life on this planet. Of course, for most of us in the course of history, thinking of ourselves and our species primarily as biological phenomena hasn’t been enough. The fact that we are temporary agglomerations of matter is not terribly satisfying for us and our big brains. We’ve loathed death and we deny it in every way we can, individually and socially. I try to face death as I face life. I try to put my life, my history, the phases of my body’s growth and decay in the broadest context I can. I don’t care to give them more importance than they are entitled to in the context of life on this planet.

My post on the social inequality in Emergency Departments is coming but my next one is about our immune system, the traitor that it is.