An account of the experience of a patient with Active Surveillance
We received an unsolicited email last week that told a story we’ve heard far too many times.
It went like this:
Just thought I’d share my story.
In Jan 2019, I was diagnosed with Gleeson 6 localised PCa, so the NHS recommended me for active surveillance. That was based on a TRUS biopsy and MRI. I then went private and the recommendation stayed the same.
Just 12 months later, I was Gleeson 8 and with locally advanced PCa: T2c, N1, MO based on a PMSA PET, with suspicion of bone involvement.
So in 2019 I was probably 98% curable. In 2020 my chance of a cure is only c 5-10%.
Active surveillance is a dangerous option, especially now the 5-yr trial is out showing that HIFU is a very good curative option with minimal side effects and no downstream treatment, plus it can be done 2 or 3 times and doesn’t close off the radiotherapy or surgery options. The urologist I saw dismissed HIFU, but if only I’d known more….
So please can we get rid of active surveillance and move to HIFU for localised PCa – to me it should be the standard of care for newly diagnosed men.
We spoke with the sender last week, who described the conflicting opinions over both his diagnosis and his treatment options and lapses of communication he experienced after he received his initial diagnosis in 2019.
Deciding to use his private health insurance, he found the advice and support he received privately a mixed bag – while he was able to access higher-level diagnostic tests (PSMA) he also had limited access to information and expertise on treatment options.
He feels strongly that many men run a high risk of being undercared for and undertreated when they agree to AS,and can only benefit when they are fully informed of all options available to them.
A recent posting to Prostatecancer.net addressed the experience of Active Surveillance from a patient perspective, and offers some insightful comments on what it takes to benefit from it. In addition to providing tips and advice, it demonstrates candidly and at a practical level what to consider when faced with the choice of AS in the era of evidence-driven non-invasive curative treatments like focal therapy
Alan Doherty, Head of the Birmingham Prostate Clinic and Consulting Urologist for the Focal Therapy Clinic, believes Focal Therapy offers a significant advantage over Active Surveillance for most men who are suitable for both approaches to prostate cancer management, and this advantage has increased steadily over the period that he’s been practicing focal therapy.
In his view, we now have 2 things that have transformed treatment for prostate cancer and have underpinned the advantage of focal therapy:
- 15 year evidence on outcomes – quality of life and oncological – for men undergoing Focal Therapy
“It’s a no brainer,” says Alan. “If you can see it, why not treat it? There’s minimal harm in treating localised prostate cancer focally, but there could be harm in not treating it.”
Do you have experience with Active Surveillance? We’d love to hear from you.