Important medical findings are often made by studying the effects of a new drug or imaging technique. But sometimes, researchers can make advances simply by asking “How can we treat patients better?”
A new paper from clinician scientists at The Institute of Cancer Research and The Royal Marsden does just this – asking how to better treat testicular cancer in men with Down syndrome.
The genetic imbalance that gives rise to Down syndrome – in which cells have an extra copy of chromosome 21 – can increase the risk of that person getting many chronic or life-threatening conditions. People with Down syndrome are 10 to 20 times more likely to be diagnosed with a blood cancer such as leukaemia, and men with Down syndrome are also at increased risk of developing testicular cancer.
Testicular cancer is relatively rare (for every man diagnosed with testicular cancer in the UK in 2011, nearly 19 were diagnosed with prostate cancer) so the number of patients who also have Down syndrome is quite small. Many of these men are referred to The Royal Marsden, because of the hospital’s role as a specialist treatment centre.
The paper discusses the challenges which medical teams must overcome when treating these patients. In particular, communication with men with Down syndrome can be difficult – and can sometimes result in these men receiving a poorer standard of treatment than others.
Top of the paper’s list of suggestions is that radical – and potentially curative – treatments can still be given to these patients, but that a truly individualised approach to treatment should be applied.
The communication challenge
Dr Shaista Hafeez is a Clinical Research Fellow here at the ICR and also treats patients at The Royal Marsden. She is one of the authors of an opinion piece published in BMC Medicine and explained to me their reasons for writing it.
“Our practice has access to a large testicular cancer population. And we know that men with Down syndrome are predisposed to testicular cancer. What makes treating these men so challenging is that there is some suggestion that the disease is biologically different in this population, but also the way we deliver care – and the holistic approach we take with these patients – has to be different. These are young men for whom conventional communication might not work.”
I picked up on this challenge of communication – asking if this paper offers guidelines for treating these patients. Dr Hafeez explained that the purpose of the paper is not to offer guidelines for treatment – guidelines suggest that patients with both testicular cancer and Down syndrome represent a distinct subpopulation who can all be treated in the same way.
“What’s challenging with treating men with Down syndrome and testicular cancer is that Down syndrome represents a whole spectrum of intellectual ability,” Dr Hafeez told me. “We want to say ‘look at the individual patient and not their diagnoses’ – there is not one rule to follow, and treatment should be patient focused.”
Overcoming these challenges in the clinic
The paper does nevertheless contain some interesting suggestions for how to approach the care of these men. For example, ‘patient passports’, which contain the patient’s likes, dislikes and needs, could be used to help medical staff notice these patients as individuals and not as the sum of their diagnoses.
Another suggestion is that a balance must be struck between treating testicular cancer effectively in men with Down syndrome and causing a minimum amount of distress.
Most patients with early-stage testicular cancer first receive surgery in which the affected testicle is removed – a procedure known as an orchidectomy. This can cure the disease in around four out of five men and the standard treatment following surgery is for the man to be kept under surveillance to make sure the cancer does not return in other organs. But it relies on a long-term commitment from the patient to attend regular scans and follow-up appointments.
Dr Hafeez explained to me that these follow-up appointments might themselves cause distress for men with Down syndrome.
“For these patients, even a change in environment can be distressing – it can be unfriendly and unfamiliar,” said Dr Hafeez. “So the medical staff really need to watch for these signs of distress and amend treatment according to the patient.”
“If we meet a new patient and it’s clear that many invasive check-ups over months or years are going to cause undue distress, we can suggest to them and to their carers that active surveillance might not be needed if we give chemotherapy after surgery. But it is a balance between minimising distress and balancing treatment.”
This paper encourages the people treating testicular cancer in men with Down syndrome to remember the person behind the disease, to communicate well with the patient and to balance the requirements of medical intervention with possible distress caused by that intervention. The findings are likely to be helpful not just for young men with testicular cancer, but for people with all types of cancer.
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