Perceptions of partial gland ablation for prostate cancer among men on active surveillance: a qualitative study

Approach

The constant comparative method as described by Glaser and Strauss was used for thematic analysis.19 In this approach, data are first inductively coded and analyzed to identify concepts. As concepts evolve, data are revisited and undergo focused coding in an iterative process to develop themes. Interviews were conducted in a semistructured fashion to allow for the emergence of new patterns in data. Thematic saturation was initially observed after 15 interviews, when no new themes were identified. Interviews were conducted past the threshold of thematic saturation and concluded at 20 patients.

Participants

We identified English-speaking men on AS at Weill Cornell Medicine with very-low-risk, low-risk, and favorable intermediate-risk PCa consistent with the National Comprehensive Cancer Network guidelines.20 All men had been seen in clinic at least once during the past 2 years.

Recruitment and data collection

All participants provided written informed consent. Eligible patients were mailed invitations to participate in the study and offered to be interviewed by mail or phone. Non-responders were contacted also by phone, when possible. All interviews were conducted by two research assistants uninvolved with medical care.

Prior to the interview segment on PGA, participants were provided a short summary of recent evidence-based findings (Box 1) as described by the EAU in 2018.2 As most patients had never heard of PGA before, this provided necessary context for discussion. Information was presented as objectively as possible. The mean duration of interviews was 32.1 (SD 8.0) min. Relevant medical information, including age, years since diagnosis, PSA, and Gleason score, was extracted from patient medical records after interviews.

The first 10 interviews were conducted with one researcher leading the interview and both researchers present at all times. These interviews served as a training period to promote standardization of process. The final 10 interviews were then conducted separately. All interviews were digitally recorded. The final iteration of the interview template is shown in Box 2.

Analysis

Interviews were transcribed, inductively coded and analyzed. Every five interviews, transcripts were reviewed with senior researchers to discuss concepts, perform focused coding, and develop themes. The interview template was then edited to reflect these emerging themes. Research assistants inductively coded and analyzed the first 10 transcripts together to standardize methodology and negotiate emerging themes. The final 10 transcripts were inductively coded and analyzed individually. Microsoft Excel was used for data management.

Psychological safety in low-risk and favorable intermediate-risk PCa

Most men perceived their cancer as low risk, allowing them to find comfort in pursuing AS over definitive treatment. Although some men were first concerned at diagnosis, most came to understand their cancer as a chronic condition that they “needed to follow-up on,” but not immediately treat because there was not a “huge chance of it spreading.” One man acknowledged an “element of uncertainty” being on AS but did not feel the need to “dwell on” it. Moreover, one man claimed that his PCa “was the easiest thing I’ve had to deal with” among all his other medical conditions. Many men also perceived their cancer as non-fatal, commonly quoting that they were “more likely to die with it than of it.” The ubiquity of cancer was often identified by multiple patients, with one man citing that he heard “if you’re 70 you have a 70% chance of having PCa. Eighty is 80%.” One quote from an individual in his 60s exemplifies the lack of urgency most patients felt about their diagnosis:

I really don’t think about it very much. To me, it’s sort of on par with my hypertension… Hypertension, pre-diabetes, the prostate--and to me they’re on a similar level… I think of them all on kind of the same… low level of health concern that I need to be careful about and watch and do the best I can.

Discussions regarding PGA for patients accepting of AS yielded mixed results. While some embodied the idea of “just the fact that it exists does not make me want to go and get it,” others expressed interest in further discussions at their next appointment.

Although most patients were satisfied with their current management, two particular men demonstrated a large psychological toll associated with their cancer. One patient in his 50s whose parent died from cancer described PCa as “this thing hanging over your head” and likened AS to “check[ing] in with the parole officer.” Another interviewee described AS as “playing with fire” and “cutting corners.” His thought process illustrates his feeling of brokenness associated with having PCa:

I really don’t care how painful the procedure is. If they want to take a piece out, then take the piece out. If they blast me with radiation, that’s what they gotta do… I don’t feel like dying from cancer. That’s been my only concern… I want it fixed… I don’t want me walking around with cancer between my legs.

In these patients who were considering discontinuation of AS, PGA seemed “interesting” and something they wanted to discuss more with their physician.

Preference for minimalism

Most patients expressed preference for minimally invasive therapy when presented treatment options for their low-risk PCa. Some men had an innate inclination toward a less invasive procedure without any definite reason. One patient in his mid-50s explained: “there is no scientific explanation… or no deep explanation” for wanting “to save a part of my body that can continue its function in my body.”

For most men, the inclination toward the less invasive treatment reflected their desire to avoid side effects associated with prostatectomy. Most patients understood radical prostatectomy to be a “potentially life-changing procedure,” naming loss of sexual and urinary functions as main reasons. Two of the youngest patients, in their mid-50s, detailed the desire to avoid “impotence” or “wearing a diaper.” For one interviewee, the potential side effects were more worrisome than the uncertainty of living with cancer.

I was more worried about the consequences of surgery—the possible consequences- than… the actual diagnosis of cancer… the possibility of incontinence or… reduced or lower sexual activity.

Another patient echoed this sentiment toward PGA, stating “I would be willing to live with that uncertainty in order to avoid the side effects and invasiveness of the radical surgery.” Many patients equated minimally invasive treatment with less side effects. For example, one man stated if treatment, including PGA, “is less invasive, it wouldn’t have many side effects” and “will involve less risk for complication.” Most men thought PGA was a securer alternative to radical prostatectomy and voiced plans to discuss with their urologist.

However, not all men found the minimally invasive option of PGA as intuitive. These men prioritized the treatment of cancer as more important than preservation of their urinary and sexual function. One individual in his 50s reflected on his confusion at the time of diagnosis with his cancer management: “the only thing that can happen is it can get worse, why don’t we just do the procedure and get rid of it?” One patient, in his 60s, compared choosing between indefinitive treatment and possible urinary incontinence as having to pick his “poison,” but found that “it’s still better than ending up dead.” Three men perceived PGA as a “band-aid” or a “temporary fix” as opposed to radical prostatectomy because of the remaining uncertainty after focal treatment.

Additionally, approximately a quarter of men interviewed touched on the invasiveness and frequency of periodic prostate biopsies while on AS. An interviewee in his 70s worried that prostate biopsies came with their own risk of sepsis and possible antibiotic resistance. Another patient in his 70s reported opting out of annual prostate biopsies in favor of non-invasive interventions with a naturopath. However, most men did not recognize prostate biopsies as a new disadvantage when transitioning to PGA from AS. One interviewee, in his late 50s, explained:

The negative of it is something that I’ll have to do with active surveillance anyway. I still have to be monitored, I still have to do my biopsy, now I still have to do all of that. So… the negative part of it hasn’t changed what I’m current doing.

While one patient expressed continued concern over prostate biopsies in regard to PGA, most men expressed sustained interest in learning more about PGA.

The central role of the physician

Many patients trusted and followed their urologists’ recommendations in the decision-making process. Most men found confidence in physicians who were “up-to-date” and “major,” or renowned, in their specialty. Some men placed a high value in their physician’s proficiency in the procedures they perform, stating “I have looked for the best surgeon to have the best outcome… regardless of the method or procedure I choose.” Another individual highlighted his physician–patient relationship as reason for his trust: “I feel very comfortable with him and as long as I’m following the procedures that he told me to, I’m fine.” Moreover, three men interviewed completely absolved themselves of personal research to rely on their physician’s recommendations:

If my doctor says that’s the best option, then I’ll follow my doctor… If the doctor says yes, I’m not going to question him.

Most patients actively pursued information beyond the urology visit, usually online. Some men recounted anecdotes from peers with history of PCa, while a few turned to scientific studies. Many patients consulted with their friends and family, although most said this had no actual influence on their decision. Some individuals referred to their spouses as a “sounding board, someone [they] can bounce ideas off of” or “more of a supporting role [to] calm [them] down.”

Most men asserted complete understanding of their disease and treatment options, as elucidated by their urologist. Patients believed their physicians were acting in their best interest, especially with the recommendation of a “non-invasive” and “less aggressive” approach. In addition, men found their urologist’s recommendation of AS reinforced their appreciation of the low-risk nature of their condition and lessened the psychological distress associated with the cancer diagnosis. Furthermore, some men were encouraged by their primary urologists to pursue second opinions at a “teaching hospital and seek out a younger doctor.” Few patients reported their optimistic genomic biopsy results reassuring them into AS. Men described a collaborative relationship with their urologists but felt themselves were ultimately in control of the decision:

No, my doctor and I made the decision. My family played, you know, a secondary. I make the decisions about my life; they don’t. If the doctor says it is time for us to… need a decision, at that time, I will decide what needs to be done.

In considering PGA, men were even more inclined to depend on their urologists’ recommendations and expertise, given the “experimental” nature of PGA.

My surgeon’s confidence in it and his history of performing each of these procedures. I would only feel confident if he has a long history and has done it 800 times or so.

However, not all patients found their specialists to be candid in their treatment approach, stating “nobody really recommended any other treatment options other than the ones that they liked… or they performed.” These patients felt the need to “inform myself of the different therapies that were open to me.”

Intensity of treatment parallels disease severity

Many patients described their decision to pursue AS as a logical process whereby low-risk disease was appropriately managed by observation. AS was described as “an apt measure based on the diagnosis” compared with the “over-reactive invasive” option of radical prostatectomy. As one patient explained, “I just felt like it was the right thing to do. It made sense to me. It was logical… as long as there’s… regular and consistent monitoring… you know, it seemed that’s what I should do.” The lack of symptoms of low-risk disease also played a role in deciding against definitive treatment in a patient whose follow-up biopsy was negative: “If my prostate is working… If I’m not having any of the symptoms or I’m not having any discomfort… Why would I go and do anything radical?” One patient who also saw a naturopath for his PCa even felt that the management process of AS itself was excessive:

It’s our culture that’s leading us to—let’s do this procedure, let’s do this test and that test and more… what is the bottom-line improvement in one’s life when we’re, you know, talking about something that’s not that aggressive.

As a result, many patients expressed that they would proceed to surgery or radiation only if it were “necessary” or if the cancer were “worsening,” which they felt were determined by the combination of test results and provider recommendation.

This stepwise approach was expressed similarly in discussions regarding PGA, although with varied outcomes. Eleven men (55%) expressed interest in pursuing PGA only if their cancer were to progress, while nine men (45%) expressed interest at the current moment. In considering further discussion on PGA with their provider, some expressed interest only if future biopsies showed worse outcomes, since “the treatment would be aggressive to match the more aggressive diagnosis.” A few examples are illustrated:

I’m actually happy with the active surveillance. Someone would have to say that ‘your risk has increased’ and if there were something that said ‘your risk has increased’ then I would prefer to have something like focal therapy or focal surgery than a full excision of the prostate. I think that I would need a really bad Gleason score to opt in for some kind of treatment. It’s gotta be a real black and white issue.

Yet others felt that the relatively conservative and localized approach of PGA deserved consideration and at least a discussion with their provider, even at their current risk category.

The finding was in a very small area. And that the Gleason score was not highly aggressive. So therefore… it would make sense to me to do the focal therapy as opposed to doing something more radical.

Given the ability to focus on the areas of concern, just those parts of the prostate… might suggest cancer could be targeted fairly well. You know, I’d be game for something like that.