The original post was published on LinkedIn a few days ago. It prompted responses from one of Australia’s leading oncologists, Dr Ian Davis at Monash University. (He’s also the Chairman of the cancer trials group ANZUP). I’ve taken the liberty to paste his responses (and my reply) at the end.
As of today, the LinkedIn post has also attracted the attention of a senior Celgene executive, as well as a European pharma director.
Early last month, I visited a close friend’s father in hospital following his surgery for prostate cancer.
At the age of 65, Uncle H. had just had his prostate removed very cleanly by one of Australia’s most experienced prostate surgeons, who used the Da Vinci robot for the procedure. It was the morning after the operation, and Uncle H. seemed to be doing quite fine, taking tentative walks around the ward.
However, my chats with him over the next few days made it clear that he was very anxious and possibly depressed. He had been shocked into silence for several days following his positive biopsy after the pathology lab reported a high PSA level in his blood. Cancer had been the last thing on his mind, with preparations for a daughter’s wedding underway.
A week after the surgery, the pathology lab reported that his cancer was confined to one part of the prostate, and was fully contained within the organ’s ‘capsule’, with no evidence of spread: a Stage 1 tumour of low grade.
This was excellent news. The long-term relative survival rate for this stage of prostate cancer is well above 90%, and possibly approaches 99% because the previous survival estimates used data from some years ago, of course. And treatments have improved since then.
However, Uncle H. continues to be depressed. The word ‘cancer’ and all its grim connotations weigh heavy on his mind.
Coming only a few months after a close relative suffered considerable anxiety following surgery for low-grade bladder cancer – also highly survivable, although requiring a surgeon to poke around inside for any evidence of recurrence twice a year – this episode got me thinking. Was there a simple way to even partly reduce the stress of hundreds of thousands, perhaps millions, of such people around the world who now were reaping the rewards of decades of cancer research and could expect long-term survival?
This may be an important question for many employers as well, because of the potential benefits of having more confident employees when they are long-term cancer survivors with excellent prognoses.
My suggestion below is made in all humility, and with great respect for organisations doing wonderful work in alleviating the psychological challenges faced by cancer sufferers around the world. (These organisations include the American Psychosocial Oncology Society, the British Psychosocial Oncology Society, and PoCoG in Australia). I am not aware whether any similar proposal has already been made, and been comprehensively shot down by the far better-informed oncology community – a risk that I am happy to bear.
Is it perhaps time to rename highly-survivable cancers, thus subtracting the heavy weight of the ‘C’ word from the minds of numerous cancer survivors who have a greater than 95% (or better) chance of dying from something other than the disease?
Lower stages of many cancers, including prostate, testicular, breast, bladder etc. now often have relative long-term survival rates in the high 90-percents (actually approaching 100% in the most common form of testicular cancer). If the disease is redefined to accommodate survivability in the name, the new name for high-survival cancer stages would have implications not just for the mental states of millions of survivors, but possibly also for employers, insurance firms, and immigration departments.
The word ‘Aranea’, more benign-sounding Latin than Cancer (crab), is my modest suggestion, if the proposal above at all survives criticism. (Araneae is Latin for spider, which has only superficial physical similarity to crabs).
Would telling someone that they have ‘Aranea’, a highly-survivable illness, potentially make a positive difference to the patient as well as those around them?
It would be great to know your thoughts.
[The latest cancer survival statistics for common cancers have been published by Cancer Research UK here.]
Response from Dr Ian Davis, Professor of Medicine and Medical Oncologist, Monash University and Eastern Health; Director and Chair, ANZUP.
An interesting article and an interesting idea. I agree that a lot of harm is caused by overdiagnosis and overtreatment, and that some cancers are better left either undiagnosed or, if found, defused in significance in some way. Perhaps your suggestion might help. The other side of that coin though is that these pathologies are not always well-behaved, and even the percentages you use in your blog fall well short of the 100% mark. In fact, they are in the same ballpark of survival probabilities as Russian Roulette… I remember seeing a patient one day with a huge melanoma on his forehead. Impossible not to have noticed it. When I asked him why he had neglected it so long, he said, “The doctor said it was just a lesion.” I’ve had similar stories of missed cancers where other euphemisms have been used: tumour, growth, opacity, neoplasm. Kipling was right, but it works both ways.
My Reply to the Above:
Dear Dr Davis,
Thank you so much for your response – someone as skeletal an outlier in this area as I am could hardly have hoped for a reply that begins so encouragingly as the one below. The scalpel precision of the hole that you cut into my proposal is even more potent! The most conspicuous candidate for my little proposal seems to me to be Clinical Stage I Seminoma (CSI Seminoma). A former colleague was diagnosed with it last year, and subsequently proceeded to crumble to bits under the psychological distress of being struck with a cancer at a relatively young age. He is still unable to start looking for employment, despite many sessions with counselors. Dr Davis, CSI Seminoma, with its relative long-term survival purportedly ‘approaching’ 100%, appears to me to have a mortality rate not much outside the range of appendicitis, and curtails lifespan possibly by only somewhat more than Type 2 Diabetes (I may be quite wrong here, of course, as I’ve based this only on a couple of online data sources). And, from what cancer immunotherapy and other developments in the last 2 years or so seem to suggest, this ‘cure’ rate may well be replicated across 3-4 other cancers (or at least some subtypes) over the next 10 years or so. My proposal is aimed only at this quite small, albeit growing, number of potentially highly-survivable cancers. While I do understand the risk, in CSI Seminoma for example, that labeling it as something other than cancer (based on the criterion of relative survivability) may cause a higher dropout rate in surveillance – especially among younger patients with big risk appetites – perhaps this could be addressed by spacing out the surveillance schedule (to monitor for relapses) without detracting significantly from outcomes? The intention really would be to attenuate the substantial psychological morbidity that hits many men diagnosed with CSI Seminoma. Dr Davis, I apologise sincerely for any impertinence. And thanks again.
Dr Davis’ Reply:
CSI seminoma is a good example.
It’s often cured with surgery alone but can relapse, and a small proportion can go very bad. Relapses can occur very late, as well.