3 Inner Struggles During Active Surveillance

Question: What goes up and hasn’t come down? Answer: The use of Active Surveillance in the U.S.

A February, 2019 study[i] examined U.S. management trends for low-risk prostate cancer since 2010. Prior to that, the standard of care for low-to-intermediate risk PCa was an “elephant gun” approach aimed at eradicating PCa by obliterating the gland. That meant either radical prostatectomy or some form of radiation. It wasn’t uncommon for a urologist to say to a newly diagnosed patient with Gleason 3 + 3 disease, “Let’s get you scheduled for surgery and you’ll never have to worry about prostate cancer again.” While the first part of that message might have sounded scary, the second part brought comfort; I’ll never have to worry about this again. To many men, that may have sounded good, but for those who feared wearing diapers or an end to their sex lives, it was hardly reassuring.

New data leads to a big jump in AS

However, the winds of research were blowing in a new direction as studies began showing that upwards of 80% of Gleason 3 + 3 disease did not behave aggressively, that not all PCa is multifocal, and that most men on AS survived 5 years or more without apparent disease progression—roughly the same as surgery and radiation. Therefore, AS for low-risk PCa was encouraged and began gaining ground.

Indeed, a dramatic change in treatment trends occurred. The new study reveals a significant surge in the use of AS between 2010 to 2015, and at the same time a drop in both surgery and radiation:

  • AS rose from 15% to 42% among low-risk patients
  • Prostatectomy dropped from 47% to 31%
  • Radiation fell from 38% to 27%.

Of course, during the same period there was also growing interest in focal therapy approach, often called “male lumpectomy”. For example, a 2011 paper referred to focal treatment as an “interesting and intriguing option”[ii] but within four years its status is better established. A 2015 paper tells us,

In order to cure and control localized prostate cancer, the concept of focal therapy has emerged. Focal therapy is the middle ground between AS and radical therapy, offering much less morbidity with cancer control.[iii]

Nonetheless, far more patients choose AS over focal therapy, which many are never told about.

AS brings inner struggles

However, some men who elect AS as a strategy for deferring whole-gland treatment are not 100% comfortable with their choice. This is especially so if at least one doctor has conveyed the opinion—either verbally or nonverbally—that It’s really in patient’s best interest to “get it all out” because it might get worse during AS. For men who choose AS against an expressed opinion that they should have radical treatment, they may find their confidence eroded and have secret misgivings.

A new paper by McCaffery, et al. (2019)[iv] is a revealing, in-depth analysis of the “hidden experiences” of 11 men who went on AS against their doctors’ advice. The authors describe the “immense and far-reaching” impact of being diagnosed with prostate cancer that doctors may not fully understand.

The authors conducted intensive interviews with the men, trying to understand if and how they came to terms with their decision. Not everyone did, and the paper brings out inner struggles that they may not have been able to articulate until they were given this opportunity. I want to highlight three areas of vulnerability as illuminated in the McCaffery paper.

  1. Fear factor – Emotionally and psychologically, fear accompanies a diagnosis of any cancer, including prostate cancer. “Am I going to die?” is an inevitable worry. On top of that, fear of tests and procedures continues to lurk. Anyone who has had an initial 12-14 needle TRUS biopsy comes to dread repeat biopsies, which are usually a part of the AS monitoring protocol. In fact, some patients put themselves at risk by avoiding them. Perhaps the worst part of the fear is living each day with the idea of prostate cancer. A large number of men on AS decide to convert to treatment just to be rid of anxiety and self-doubt.
  2. Lifestyle stress – There’s an upside and a downside to the lifestyle changes that AS brings. On the plus side, dietary changes, supplements and committing to exercise have been shown to support stabilizing PCa so it’s less likely to progress; in fact, many men report feeling better than ever and are proud of the results. On the minus side, these changes require ongoing research and time management to implement, especially if the patient is working full time and has an active social life. The concept of stress means moving out of one’s normal resting state, so stress can occur whether the impetus is positive or negative. Sticking to AS can be more stressful than it sounds.
  3. Relationship impact – If the patient is in a committed relationship, how does his wife/partner feel about his choice? Not all partners are equally supportive, since they must also live with the fear that the patient will miss a treatment window and end up with advanced, metastatic PCa, and eventually die. The partner may resent the notion of possibly becoming a caretaker, or harbor judgments that the patient is acting irresponsibly. One man in the study ended up in a messy divorce situation, a bit extreme perhaps, but his wife couldn’t deal with his choice.

The McCaffery study illustrates much more than I’ve included here, as the authors are highlighting feelings and experiences that many men don’t have an outlet for. However, not all patients on AS have such struggles or misgivings. In fact, many feel very positive because of the way they have empowered themselves. Such men embrace AS optimistically, and have confidence in their choice. This confidence is boosted by the ability to monitor for progression with multiparametric MRI, and only need a biopsy if imaging detects a suspicious area. At Sperling Prostate Center, we’re proud that we can support men on AS through our excellent services, and help patients avoid having internal struggles.


NOTE: This content is solely for purposes of information and does not substitute for diagnostic or medical advice. Talk to your doctor if you are experiencing pelvic pain, or have any other health concerns or questions of a personal medical nature.

[i] Mahal B, Butler BA, Franco I, Spratt D et al. Use of Active Surveillance or Watchful Waiting for Low-Risk Prostate Cancer and Management Trends Across Risk Groups in the United States, 2010-2015. JAMA. 2019;321(7):704-706.

[ii] Mearini L, Porena M. Pros and cons of Focal Therapy for Localised Prostate Cancer. Prostate Cancer. 2011; 2011:584784.

[iii] Marshall S, Taneja S. Focal therapy for prostate cancer: The current status. Prostate Int. 2015 Jun;3(2):35-41.

[iv] McCaffery K, et al. Resisting recommended treatment for prostate cancer: a qualitative analysis of the lived experience of possible overdiagnosis. BMJ Open 2019;9:e026960. doi:10.1136/bmjopen-2018-026960

 

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