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When Active Surveillance Becomes Anxious Surveillance

For many men, Active Surveillance is an ideal approach to managing an early-stage prostate cancer diagnosis. They understand the obligations on both patient and care provider to monitor their prostate through regular PSA testing, MRI, and biopsy, and are confident this can be managed effectively. For these men, the trade-off between invasive treatment and its side-effects and regular visits to a clinic tips favourably to the latter.

But for other men, it’s not so clear-cut. They struggle with the obligation of regular monitoring, and sometimes this is exacerbated by constraints in the healthcare system, resulting in delays or missed appointments. But far more importantly, it’s the “not knowing” that compromises the well-being of these men.

TFTC Consultant Raj Nigam feels strongly about this. “The criteria for AS ignores mental well-being” says Raj. “Having gone through the process of diagnosis, and then being told he doesn’t need to do anything and yet he has cancer, is too much for some men. They simply find this hard to accept, and they cannot live with the not knowing”. Hear Raj’s full comments here.

In a recent On Focus interview, TFTC patient Perry Letcher talked openly about his short-lived experience with AS. Initially he was positive about it, “at the time I was relieved because I had been worried that I had a life threatening illness”, he told us. “And I was suddenly told, actually, this isn’t, in your case, a life threatening illness. This is a low grade, low volume tumour. And a lot of people have this. You’re a bit too young in some respects to be getting this. And it is something we need to keep an eye on. And at the time, you know, when I was told active surveillance, that seemed perfectly logical and I was perfectly happy about it”.

Perry was on AS for a little over a year, and found his feelings about it shift considerably.

“I think one of the big issues with this is that one’s perception changes over time. One’s feelings change over time. And I think that it’s very easy for the NHS to say, you know, he’s on active surveillance and that’s OK and we’ll just leave it. Not realising that that person can have massive changes in their own feelings about how it goes”.

Perry found the delays in testing and the delivery of test results a problem. “When I had this MRI, I was expecting the results in a week because that was what I’ve been told when I had them. I then phoned up the urology clinic and was told, no, there’s no way we can have them now, that it would be two weeks. I phoned them after two weeks and I said, oh, yes, well, of course, I don’t know whether they’ve come in yet, but in any event, the multidisciplinary team would have to review them before we could do anything and say anything. And after three weeks I was climbing the walls. Is the straight reality of the situation. And I was fully aware that it was affecting my mental sobriety and, you know, my mind can take me to some fairly dark places. I feel like the luckiest man on the planet. And I truly believe that because when I was an active alcoholic, my mind took me to some very, very dark places to the point where I was seriously contemplating ending everything.”

A recent study in the US explored how AS was experienced by men with low-grade prostate cancer.

“For roughly one-third of the patients, it is more like “anxious surveillance”; they drop out of AS because they find they can’t handle the uncertainties of living with cancer. Spouses and friends may be urging them to be “safe” and excise the cancer. One-third drop out because surveillance has shown they have more advanced cancers requiring intervention. The remaining third go on to live out their lives and die from something other than prostate cancer”

The authors point out that non-surgical alternatives, such as focal therapy, are building evidence fast. “Men on active surveillance for low-risk or intermediate-risk (Gleason 3+4) disease aren’t just waiting for their cancers to advance so they can undergo treatment. Patients may forget that AS can buy us time as new strategies and new technologies emerge.”

Focal therapy is a viable alternative for many men on AS. If you are an AS patient and interested in learning more about focal therapy, contact us for an informal discussion.

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As a group of consultants we are passionate about prostate cancer sufferers knowing about all of their treatment options.

We know that settling on the right treatment is a big decision for you. If you would like to speak to one of our friendly and knowledgeable patient advocates about your diagnosis and the HIFU Focal Therapy treatment option then please do not hesitate to get in touch today.

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