John's Story

Ethnicity
White British
Age
70-79
Work
Retired
Sexual Orientation
Straight
Geography
North East
Relationship status
Single/divorced

Active Surveillance

How this treatment impacted my life the most

The decision-making process was stressful. My younger brother was dying in the terminal stages of late-diagnosed, aggressive prostate cancer. A locum GP had told him a few years earlier that he didn’t need a PSA test. My PSA had recently started to increase, but was still only 3. However, a palpable abnormality was detected in a DRE by my GP (well-spotted), confirmed by MRI (PIRADS 5) soon after, and then sampled by biopsy. The consultancy appointments in the busy clinic were time-limited. I was asked to decide about treatment options, but I was still trying to learn more about the disease. I insisted on copies of the recorded medical reports. The pathology report stated GG2 (Gleason 3+4) based on '<10%' of Gleason 4 in six cores (three systematic, three targeted). Active surveillance was initially recommended, then, at short notice, specifically not recommended following upgrading from stage T2b to T3a. A minimal capsular irregularity had been spotted in the routine second review of the MRI scan. I was offered a choice between prostatectomy and radiotherapy. I felt that I was being railroaded into radical treatment. After a few days of concerned reflection and urgent study, I requested a different expert opinion on the MRI scan and a proper estimate of % Gleason 4 in the pathology report. Following the MRI review, the stage was downgraded back to T2. The % Gleason 4 was reported as 1-2% in just one of twelve systematic cores, none in the targeted cores (implying GG2 for the systematic cores and GG1 for the targeted cores). Active surveillance was restored as an option. The second MRI scan (mp-MRI) a year later showed the condition to be stable with no threatening irregularity. The second pathology report stated GG1 on the systematic cores and GG2 with ‘<10%’ Gleason 4 in three of the four targeted cores. This was elaborated to 9% Gleason 4 in (one or more) target cores after I asked for a proper estimate – quite a change from the first biopsy - presumably better targeting in the second biopsy. The pathology reporting protocol has still not been explained. I am concerned about the box-ticking '<10%' Gleason 4 which has described levels of 0% (wrongly), 1-2%, and 9%. The lack of a proper estimate disguises poor repeatability and precision of the combined biopsy and measurement procedure, and could affect interpretation of any trend over time. Lower reporting bands of Gleason 4, say <2%, 2-5% and 5-10%, and an overall report summary would be more informative. 

If I had to do it all over again, would I choose the same treatment?

Yes

Why did I give this answer?

Radical treatment is potentially premature and/ or excessive for intermediate risk disease. Statistical evidence (NHS Prostate Predict model) supports active surveillance as a reasonable option for the measurements in my case. The recently published results from the ProtecT trial suggest that the risk of early death is low. There is a balance of risk between premature treatment and disease progression. The choice of radical treatment or active surveillance needs the informed consent of the patient. I had to insist on a full dialogue with the physician and full diagnostic evidence with advice about its uncertainty. Unfortunately, physician time is very restricted in the overstretched NHS. I have only moderate confidence in the process so far. I came very close to agreeing to a premature prostatectomy. If evidence is not clear-cut, then a more careful review is required.

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