When Experiences Misalign With Expectations: Prostate Cancer Treatment

Andrew Siegel MD  5/2/2020

To begin on a personal note, I am excited to report that last Saturday evening my son was awarded 3 New York Emmy Awards for his documentary special “White Hot Spotlight: Billy Joel and the Greatest Arena Run in History.  He received Emmys in the following categories: Program/Special, Photography and Editing.  He is currently  working on a 3-part Netflix documentary on the unsolved Boston Gardner Museum art heist. He is the often-consulted IT expert of the family and master of all things audio-visual and technical.

ExpectationsVsReality

Thank you, Jeff Siegel, for image above

A December 2019 article in the Gold Journal of Urology entitled “Discrepancy between Expectations and Experiences after Prostate Cancer Treatment: A Dutch Study” by LA Grondhuis Palacios et al concluded the following:  A discrepancy between expectations and sexual side effects after prostate cancer treatment was found in one-third of men…moreover, one-fourth of men reported to have received insufficient information as to possible development of sexual side effects…It is recommended that health professionals provide brochures in additional to verbal information in order to improve patients’ understanding of possible sexual side effects and to enhance the accuracy of expectations.

I  heartily agree with the conclusion of the authors. In most circumstances, detailed information regarding prognosis and treatment is well communicated to the newly diagnosed prostate cancer patient. However, counseling and education about quality of life issues that may result from prostate cancer treatments, e.g., sexual dysfunction and urinary problems, are at times neglected, marginalized or not given sufficient attention.  Counseling deficiencies as well as the actual occurrence rate of side effects and complications are much less likely to happen when prostate surgery is performed by skilled and experienced high-volume surgeons including our Maywood-Teaneck urology practice  and when radiation is performed by skilled and high-volume radiation oncologists including NJU cancer treatment centers.

Sexual functioning is vital to the well-being of most men.  Sexual dysfunction is the most common complaint in prostate cancer survivors, with all management options incurring the potential risk of sexual issues aside from active surveillance.

Why might counseling about sexual dysfunction in prostate cancer patients receive short shrift?

  • Cancer is a potentially life-threatening issue, so sexuality may be considered lower in the hierarchy of priorities.
  • Some patients may regard sexual dysfunction as an inevitable and acceptable side effect in the face of a serious cancer.
  • Some physicians are uncomfortable discussing sexuality and do not consider themselves adequately trained to address sexual issues and some patients feel ashamed or embarrassed to ask questions about sexuality following treatment.
  • Office visit time constraints often do not allow sufficient time to discuss the details of every possible side effect.

Here’s the thing:

Because most patients who have been treated for prostate cancer have an excellent prognosis, the long-term consequences of the disease often become the side effects of treatment.  The most common complications after radical prostatectomy are sexual dysfunction and urinary incontinence, quality of life issues that may be less well attended to in the patient education process than some patients would like.

One of the principal aims of my book, Prostate Cancer 20/20, is to address the inability of a 30-45 minute office consultation to convey all of the pertinent information that a newly diagnosed prostate cancer patient and his family needs to know. The book serves to fill the gap between the comprehensive guidance that needs to be communicated and the time constraints of contemporary medical practice.

The first section of the book reviews prostate anatomy and function basics, PSA, MRI, biopsy procedure and biopsy report results, Gleason grading, biomarkers, risk assessment and all treatment options, with pros and cons of each treatment clearly specified. The second and third sections address in detail the potential urinary and sexual side effects of treatment, respectively. The goal of the book is to provide genuine informed consent, full disclosure and transparency.

I was fortunate to receive a grant from Genomic Health/Exact Sciences to underwrite the printing cost of the book so that a copy can be given free of charge to our practice’s newly diagnosed patients as well as those who have been treated and have urinary and/or sexual side effects.

Bottom Line: Prostate cancer patients and their partners are entitled to be fully informed about potential adverse side effects of treatment and provided with realistic expectations regarding expected sexual and urinary functioning.  A well informed patient is less likely to have decisional regret, even if outcomes are not exactly as expected. One major intent of Prostate Cancer 20/20 is to impart knowledge about the collateral issues that may result following the various treatments for prostate cancer and how they can be effectively managed.

Wishing you the best of health,

2014-04-23 20:16:29

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Dr. Andrew Siegel is a physician and urological surgeon who is board-certified in urology as well as in female pelvic medicine and reconstructive surgery.  He is an Assistant Clinical Professor of Surgery at the Rutgers-New Jersey Medical School and is a Castle Connolly Top Doctor New York Metro Area, Inside Jersey Top Doctor and Inside Jersey Top Doctor for Women’s Health. His mission is to “bridge the gap” between the public and the medical community. He is a urologist at New Jersey Urology, the largest urology practice in the United States.

The content of this entry is excerpted from his new book, PROSTATE CANCER 20/20: A Practical Guide to Understanding Management Options for Patients and Their Families

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Video trailer for Prostate Cancer 20/20

Preview of Prostate Cancer 20/20

Andrew Siegel MD Amazon author page

Prostate Cancer 20/20 on Apple iBooks

PROSTATE CANCER 20/20: A Practical Guide to Understanding Management Options for Patients and Their Families is now on sale at Audible, iTunes and Amazon as an audiobook read by the author (just over 6 hours). 

Dr. Siegel’s other books:

FINDING YOUR OWN FOUNTAIN OF YOUTH: The Essential Guide to Maximizing Health, Wellness, Fitness and Longevity

PROMISCUOUS EATING— Understanding and Ending Our Self-Destructive Relationship with Food

MALE PELVIC FITNESS: Optimizing Sexual and Urinary Health

THE KEGEL FIX: Recharging Female Pelvic, Sexual, and Urinary Health

 

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