Medscape» The Hidden Cost of Prostatectomy: Patient Regret

[BerkshireBear]

Article in Dec 3 Medscape. I believe it's a subscription only site, so am including a copy below. Comments from doctors have been generally in agreement.

medscape.com/viewarticle/96...

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The Hidden Cost of Prostatectomy: Patient Regret

M. Alexander Otto, MMS, PA

December 01, 2021

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Men with localized prostate cancer who opt for radical prostatectomy are more likely to regret their decision than those who opt for radiotherapy or active surveillance, according to a survey study of 2072 patients.

At 5 years, 13% of men surveyed experienced treatment-related regret, which varied by treatment type — 16% (183) of surgery patients regretted their decision vs 11% (76) of men who opted for radiotherapy and 7% (20) who chose active surveillance.

The main driver of regret was a sense of not being fully informed of the risks and benefits of the three options and the risks of surgery, in particular.

"A disconnect between patient expectations and treatment outcomes, in relation to both treatment efficacy and toxicity, contributes more substantially to treatment-related regret than patient-reported functional outcomes," which includes erectile dysfunction, urinary incontinence, and bowel dysfunction, according to the authors, led by Christopher Wallis, MD, PhD, a urologic oncologist at Mount Sinai Hospital in Toronto, Canada.

The study appeared online on November 18 in JAMA Oncology.

In an accompanying editorial, Randy Jones, PhD, RN, a nursing professor at the University of Virginia, Charlottesville, said the study makes a strong case for the role of in-depth counselling and shared decision-making.

Considering "the potential to enhance quality of life and decrease decisional regret, it is well worth the time for clinicians to assess and address patients' treatment concerns," he wrote.

Although not used often in routine practice, Jones noted that interactive decision aids can help. These tools "provide the space for patients, caregivers, and clinicians to discuss the major concerns of the patient, assess and work through any challenges patients and caregivers may have regarding treatment options, provide clear information about the treatment options, and help the patient make the best decision for himself," Jones wrote.

Study Details

Men surveyed in the analysis were diagnosed with low-risk prostate cancer between January 2011 and December 2012 at several centers in the US.

The study participants were members of the Comparative Effectiveness Analysis of Surgery and Radiation (CEASAR) cohort, launched a decade ago primarily to compare the effectiveness of surgery and radiation.

Median age at diagnosis was 64 years. Radiotherapy patients (32%) were older with more comorbidities and slightly higher-risk disease than surgery patients (55%). Men opting for active surveillance (13%) were typically older than those undergoing surgery but younger than the radiotherapy group, and more likely to have low-risk disease.

The authors gauged patient regret using a validated questionnaire, with statements including "I would [have been] better off with a different treatment," "I feel the treatment was the wrong one," "I would choose another treatment if I could," and "I wish I could change my mind about the treatment I chose."

The men were surveyed 6 months after diagnosis and then again at 1, 3, and 5 years. At 5 years, the response rate was 71%.

Adjusting for baseline differences, men who had surgery were more than twice as likely to regret their decision at 5 years than men who opted for active surveillance. Men who chose radiotherapy were about 50% more likely to experience regret, although this finding was not statistically significant.

Not surprisingly, regret was far more common among men who judged their treatment to be much less effective than anticipated and their adverse events to be much more severe.

Interestingly, participatory decision-making and social support appeared to protect against regret, as did older age.

The authors noted that many low-risk men in the study who underwent surgery or radiation would likely be counseled toward surveillance today, given National Comprehensive Cancer Network recommendations.

Even so, the findings can inform practice now. "Improved counseling at the time of diagnosis and before treatment, including identification of patient values and priorities, may decrease regret among these patients," the authors concluded.

The study was funded by the Agency for Healthcare Research and Quality. Several investigators reported industry ties, including Wallis, who disclosed receiving personal fees from Janssen Canada. Jones did not report any disclosures.

JAMA Oncol. Published online November 18, 2021. Abstract, Editorial

M. Alexander Otto is a physician assistant with a master's degree in medical science and an award-winning medical journalist who has worked for several major news outlets before joining Medscape. He is an MIT Knight Science Journalism fellow. Email: [e-mail].

[noahware]

I suspect a lot of regret comes from men who were told by their urologists, "you have cancer... we need to remove it... now," and then these men did no further research or investigation but simply did as the docs suggested. I know MY urologist said that, roughly speaking, without much of a discussion of "options" or toxicity or of delaying the RP to make sure I felt it was the way I wanted to go. (Perhaps he was saving those details and discussions until AFTER I scheduled my RP, lol.)

That's not to say RP was the wrong choice for these men, but they FEEL like it was, because they proceeded from a place of fear and/or lack of knowledge. I imagine I am like most men when I thought of "cancer" as a singular thing that, regardless of stage or location, was 1) going to kill me quickly if it wasn't 2) completely removed asap (like, YESTERDAY).

My doc did little to disabuse me of these notions. I had NO idea that many (most?) cases of PC were slow-growing and potentially non-lethal, and that there were multiple treatment options that included, of all things, just WAITING and putting off surgery for several months or more.

If you are experiencing no symptoms, your PC usually would fall into one of three categories: 1) surgery is a good option but is in no way "urgent" or, 2) you are metastatic and surgery is a possible option but not SOC, or 3) you don't need no stinkin' surgery because you are old and your cancer is indolent and you will die of something else LONG before that cancer could ever kill you!

[Shooter1 in reply to noahware]

Not discussed in depth with my urologist, but I was in pain and he did explain that he feared no nerve sparing surgery would work for me. He was right. Pain gone right after surgery. Continence returned after 6 weeks but PSA going up acct of all the stuff he couldn't get out. Best choice for me.

The men in the study were all low risk patients. Other options could have been best choice for many of them....

[noahware in reply to Shooter1]

Yes, having pain or other symptoms changes everything. If surgery will relieve them, it becomes a no-brainer.

Like many, my PC was purely a discovery via PSA level. Because it was high enough (20) to merit scans, and the scans found probable mets, I was spared the tough choice that faces men with lower-PSA biopsies of 3+4 PC: to RP, or not to RP, that is the question.

While some docs may tell these men they have time to "relax" for weeks or months to come to a decision, I suspect many docs convey a MUST-do and must-do-NOW approach that coincides with a man's own natural tendency towards a "get this thing outta me!" response to his diagnosis.

[B8ssist]

I am almost 2 years out from surgery. I was not a “low risk” as they talk about in this article. I was a 4+3 & during surgery my urologist discovered 1 positive lymph node. That changed my course of treatment. My friend, is low risk by his biopsies and his urologist is watching him. Essentially for him, he was told he would die from something else not the prostate cancer. I was given 2 options based on my biopsy results: radiation or surgery. HIFU, was our due to the expense though this is what I had really wanted. I believe God directed me into surgery for the very reason of the metastasis that God knew about well before I did. My only regret, is getting prostate cancer to begin with.

[Shorter]

I was not low risk like this article talks about. My case is not typical, but my RARP was life changing and made me consider suicide. I had a recurrence about 2 years later and had ADT + radiation. It was a bump in the road. To say I had surgery regret is a gross understatement. It took some hard choices and another surgery to fix what was done to me in the RARP to make my life worth living again.

[JRPnSD]

The fact that these were low risk individuals says it all. As someone with a Gleason 9 biopsy...I am very happy with my choice of RP via a skilled robotic surgeon. I believe it is why I am alive today.

[Gemlin_]

One can wonder why someone regrets something that has given extra years of life.

[Hidden]

Then there was the day that my research medical oncologist professor said, “don’t second guess your primary treatment as it would not have mattered. You had micro-metastasis before initial diagnosis.”

GD

[ImaSurvivor1]

It's not surprising that Radiotherapy patients less often regretted there decision, as they "were older with more comorbidities and slightly higher-risk disease than surgery patients. It's not surprising that men opting for active surveillance didn't regret their decisions either since they "were more likely to have low-risk disease" and could always get treatment later if needed. The Medscape article is full of reasons why the statistics it cites are not very meaningful. As others have said, it depends how low or high risk your cancer is, and in any case your best chance of being satisfied with your treatment comes from learning as much as possible about the procedures and reading up on on the potential side effects that most doctors don't take time to discuss with you. Then determine how big an issue those side effects are for your personal situation (age, overall health, lifestyle, relationships, etc.) Another thing not mentioned in the article is that very often the side effects of surgery improve over time, while the side effects of radiation often get worse over time. While is may be the best choice for many, it's not for no reason that so many people say radiation is the "gift that keeps on giving."

[j-o-h-n]

They forgot to mention the 2.5% of men who were disappointed having a sex change operation prior to their Pca diagnosis,...

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 12/06/2021 6:55 PM EST