When cancer returns: Layton case not unusual
Fear and uncertainty can race to the surface again, psychologist says
For patients like NDP Leader Jack Layton who thought they had successfully conquered cancer, a second diagnosis of the disease is just as devastating, if not more so, as the first, experts say.
"It is re-traumatizing. The trauma goes back to the shock and fear of being diagnosed again with a potentially life-threatening illness," says Dr. Andrew Matthew, a psychologist who counsels cancer patients at Princess Margaret Hospital.
"When you've gone through a first diagnosis and treatment, time has passed and you gain greater confidence in your health. So when there is a re-experience of that diagnosis, all the same feelings of fear and uncertainty race to the surface even more quickly than before. It's like you thought you had left that in your past and all of a sudden it's part of your future again."
Patients are also disappointed, says Matthew. "There's definitely feelings of anger, which really represents frustration over a sense of losing control in your life."
The NDP leader shocked his caucus and many Canadians on Monday when he held a news conference to announce that he was recently diagnosed with a second form of cancer and was taking time off to fight it.
Layton was diagnosed with prostate cancer in late 2009, but did not reveal what kind of cancer he is fighting now.
He is receiving treatment at Toronto's Princess Margaret Hospital and the experts interviewed by CBC News stressed they were not referring to Layton's case specifically, citing patient confidentiality.
Layton raises awareness
By speaking out about prostate cancer, NDP Leader Jack Layton helped raised awareness about the disease, says the executive vice-president of Prostate Cancer Canada. "When you have a high-profile person like Jack Layton talk about prostate cancer, people take notice. In the past, it was not on the radar screen," says Rebecca von Goetz. "Having his name and face [as part of an awareness campaign] really helped. It seems to make men more comfortable talking to their doctors about it." Layton inspired people, and the news that he has been re-diagnosed with a new form of cancer has had a huge impact, von Goetz adds. "People are devastated. They are really rooting for him. He's a likable fellow."
Prostate Cancer Canada recommends:
- As of age 40, men should undergo the prostate-specific antigen test (PSA), a screening tool for prostate cancer to establish a baseline PSA value and men over 50 should consider annual or semiannual PSA monitoring.
- Early detection is key because over 90 per cent of cases are curable.
- Men with a family history of prostate cancer or those of African or Caribbean descent should speak to their doctors about starting PSA tests earlier than age 40.
One diagnosis of cancer can be overwhelming, but the effects are compounded psychologically with a second one, says Dr. Tony Finelli, a surgical oncologist at Princess Margaret who specializes in urological cancers.
"One of the common things I see when patients are diagnosed with cancer is they go through a phase of insecurity, instability, not having faith in their body, feeling every little twinge and ache as a possible manifestation of a recurrence.
"So you're regaining your confidence and you get another diagnosis. Psychologically it's hard, you start to wonder if you're prone to cancer, if you'll die of cancer. That weighs on patients quite a bit."
When someone has treatment for a primary tumour, on average there is a 30 to 50 per cent chance of recurrence, across all organs and all tumours, says Finelli.
But there is wide variation depending on the cancer. For example, small kidney tumours have a five to 10 per cent chance of recurring, while with certain brain tumours the recurrence may be as high as 70 per cent.
Recurrence is a term doctors use to describe when the primary tumour type has returned in the same or another site. Progression is when the tumour grows.
A patient who had a kidney tumour for example, would likely be treated with surgery — a partial nephrectomy (removing part of the kidney) or a radical nephrectomy (removing the entire kidney).
Such a patient had only local disease, and after surgery would be considered tumour-free. Then if down the road, a CAT scan revealed a new spot somewhere else, such as the lung, and the same type of tumour was involved, it’s called a recurrence and more specifically a distant recurrence, or metastasis.
The likelihood that an individual develops multiple tumour types in their lifetime, as appears to be the case with Layton, is about 10 per cent.
"So the chance of that is not high, it's low, but not insignificantly low. With the aging population, more people are living longer and we're detecting tumours earlier. It opens the door to more people showing up with another primary tumour elsewhere," says Finelli.
"It's usually the prevalent ones: lung, breast, colorectal and prostate — four very common cancers. They're totally unrelated. So if you're seeing a 70-year-old man, it's not uncommon to hear that he has prostate cancer and also had a colon tumour or a woman had breast cancer and now she has another tumour."
Calculating the odds
That was the case with former Citytv broadcaster Mark Dailey, who publicly battled prostate cancer and was essentially cured of it.
Then he was diagnosed with metastatic kidney cancer — a completely different tumour not related to prostate cancer. The cancer spread to his lungs, and he died last December.
The odds of surviving both depends on the types of tumour. If a patient develops a less-dangerous type of tumour it really has no effect on the survival rate.
"The two diagnoses don’t compound your likelihood of death. They’re independent odds," says Finelli. "So it’s a totally new fight starting all over again. The only way they would be related is if the treatment of one tumour limited how much treatment you could do for the second one, but biologically, the odds should be independent of each other."
The only caveat with a new tumour is that doctors are now treating a person who has or had another tumour. That's where competing health risks come into play.
"Let's say I have a patient with a favourable prostate cancer, so a low-risk prostate cancer, and he develops a significant tumour in another organ. I'm going to be very aggressive in treating the new development because the low-risk prostate cancer is unlikely to affect his overall survival," says Finelli.
"On the other hand if I’m seeing a patient who has recently battled a very significant cancer, something like pancreatic cancer and has had a significant tumour removed and now he is diagnosed with a low-risk cancer elsewhere, I’m going to sit tight on that second cancer because he has a high rate of recurrence from his original cancer and possible death at some point from it, so why expose him to the morbidity of an intervention that is unlikely to affect his overall survival?"
Benefits of experience
Despite the devastation of another cancer diagnosis, most patients eventually realize that they are better equipped to handle it the second time around, says Matthew.
Patients are more informed about the illness, they've built relationships with medical specialists, and they have also learned how to navigate the system and advocate for themselves.
"The thing that helps people cope best with illness is support from family, friends and colleagues, so they're not concerned about all the other responsibilities in their lives and can focus on their health," says Matthew.
"They need to stop, reset and make space and time both externally and internally to challenge the disease."
Though it sounds counter-intuitive, growing research shows that exercise in the face of fatigue is also beneficial for people battling cancer, says Matthew.
"You get your body stronger to handle the treatments and it's also very good psychologically because it can take you away in your mind and give you a cancer vacation so to speak."