Decision Regret in Patients with Localised PCa: A Systematic Review and Meta-analysis

Decision Regret in Patients with Localised Prostate Cancer: A Systematic Review and Meta-analysis (2023, Full Text)

"Abstract

Context
Treatment choice for localised prostate cancer remains a significant challenge for patients and clinicians, with uncertainty over decisions potentially leading to conflict and regret. There is a need to further understand the prevalence and prognostic factors of decision regret to improve patient quality of life.

Objective
To generate the best estimates for the prevalence of significant decision regret localised prostate cancer patients, and to investigate prognostic patient, oncological, and treatment factors associated with regret.

Evidence acquisition
We performed a systematic search of MEDLINE, Embase, and PsychINFO databases including studies evaluating the prevalence or patient, treatment, or oncological prognostic factors in localised prostate cancer patients. A pooled prevalence of significant regret was calculated with the formal prognostic factor evaluation conducted per factor identified.

Evidence synthesis
Significant decision regret was present in a pooled 20% (95% confidence interval 16–23) of patients across 14 studies and 17 883 patients. This was lower in active surveillance (13%), with little difference between those who underwent radiotherapy (19%) and those who underwent prostatectomy (18%). Evaluation of individual prognostic factors demonstrated higher regret in those with poorer post-treatment bowel, sexual, and urinary function; decreased involvement in the decision-making process; and Black ethnicity. However, evidence remains conflicting, with low or moderate certainty of findings.

Conclusions
A significant proportion of men experience decision regret after a localised prostate cancer diagnosis. Monitoring those with increased functional symptoms and improving patient involvement in the decision-making process through education and decision aids may reduce regret.

Patient summary
We looked at how common regret in treatment decisions is after treatment for early-stage prostate cancer and factors linked with this. We found that one in five regret their decision, with those who had experienced side effects or were less involved in the decision-making process more likely to have regret. By addressing these, clinicians could reduce regret and improve quality of life."
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It is no surprise that patients in the RP and the RT groups with regret included those with poorer post-treatment bowel, sexual, and urinary function, but of note to me was that the percentage of patients with decision regret in both groups was about equal. See the Full Text for details.

Djin

I wonder if those experiencing regret are also prone towards “buyers remorse” when it comes to financial decisions?

PS, it occurs to me that AS regret could come from just wanting to "get it out." I didn't read the paper, so maybe it is explained.

I think that those regretting doing AS are those who found higher grade cancer on their next biopsy. At least, those are the people most bitter towards AS in various discussions I’ve been in.

I get where they are coming from, and we need to have better diagnostic tools to separate out the truly low risk from others. We just don’t have that capability yet.

I am familiar with the one-eighth of AS men who experience high anxiety, which is often due to relatives’ cancer experiences and current pressure from relatives to get treatment.

Some of those men live in such anxiety that I counsel them to leave AS and get the treatment they crave. Some people cannot be convinced. No sense them living in high fear.

When the day comes that newly diagnosed men can be confidently placed in treatment and AS tracks, this tension and debate will end. I pray that time comes soon.

You can make all the right decisions up front and still get a crappy outcome. Although proper education and research can make all the difference in the world, medicine remains a roll of the dice. Still, it's so important for patients to do their own homework and research prior to elective surgeries and non-emergency procedures, and not just take what the "experts" tell you as gospel. I believe the greatest amount of hurt and disappointment happens when the patient gives the "experts" full reign of control over his health, then things go south. At that point it becomes very easy to blame others for poor outcomes. Choosing the right doctors, understanding the disease, knowing the available treatment protocols, asking lots of questions, joining support groups and interacting with those who have experienced the same condition(s), and participating in the decision-making process is a patient obligation. And quite often it increases the chances for success. Even then, if things go wrong, one can say "I did my due diligence and everything possible to kill the beast, and it wasn't meant to be". Some ownership might help mitigate the pain.

I'm guilty of this myself. I was on AS for 5 years before RALP. My providers never offered a multiparametric MRI. I should have demanded it - or went somewhere else to pay out of pocket for one. That's on me. The pathology report showed EPE, which I probably had for years and might have been detected earlier by an MRI. Luckily, by the grace of God, it worked out and 7 years later I'm still undetectable. However, had the Pca recurred it would've been very easy for me to blame the providers for the unwelcomed outcome. A lesson learned.

I note the conclusion statement about increasing patient involvement in decision making. This fits with the not uncommon discussion point in here. That covering all the bases in the pre-treatment consultation process is an important part of the decision making, and that those who DO cover all the possible bases have less treatment regret than those who go from diagnosis to treatment based on the single recommendation of the diagnosing doctor--regardless of whether the post treatment outcome is positive or negative.

On the topic of AS, there is also a chance of dealing with incompetent doctors. If my RA and hormone treatments work out in the long run, great. If not, then I will blame my first two Uros. I may even sue them.

I went into my PCP with blood in my semen. He said, that is not normal. He sent me to a Uro who said it was normal for older men and to come back in a year. The blood in the semen was hit and miss, so I trusted him. On my next visit to my PCP a year later, I was still having the blood issue. He again said that the blood in my semen was not normal and sent me to a different Uro. At least that Uro said that it wasn’t normal, but didn’t do an BX. Instead he did a TURP for my BPH. The DX from the tissue was 3+3 Gl 6. At no time did anyone mention what that meant or anything about PC. After several months he thought it was a good idea to do a BX. That was when I was first told he was checking for PC. The result was 3+4 GL 7. He said I had PC, but such a small amount that AS was certainly the way to go. After several months he left the practice. I got a call from the Uro that replaced him to come in. He said, with a GL 7, I should have already been getting treatment. He wanted to do a repeat BX. That result was 4+4 GL 8. He said I needed to make a quick decision on a treatment choice, He said if I chose surgery, he would have to take at least 1 nerve and more than likely that would be followed by RA and ADT. I chose RA and ADT.
If a person knows nothing about PC, then they are left to trust the doctors recommendations. The discussion about being a self advocate and doing your own research is only good if you know what to research in the first place. I didn’t start researching PC until after my DX of an GL 8 and is also when I found this support group. It would have been great if my Uro would have directed me to PC support groups. I had no idea they existed.
For the help here, I am very grateful. As far as the discussion on AS and my feelings, I think you can guess how I feel.
My gratitude to all here and best wishes.
Jack

How can I possibly regret having had treatment?
Yes I'm suffering the side effects of which stricture is the worst but what is unknown is whether or not I'd suffer more if left untreated. If I had a crystal ball and knew for certain my localized PCA would have remained as such, Yes I'd be very unhappy.
On the other hand if it would have gotten worse and killed me or caused all manner of suffering, I'd be joyous that I treated it earlier.

Maybe I didn't understand that study.

Glen

On the radiation side, the technology is leaking and bounding forward at such a pace, that I could see someone being “jealous” of newer patients who are availing themselves of much better tech than even 5 years ago. I truly believe MRI real time guidance of radiation will be the next big leap, for example.

My FIL has an open radical prostatectomy many years ago, for what proved to be G6, and no nerves spared. Not only would his surgery likely have spared him the permanent ED, but he could have been on AS possibly. I know he was well aware of his condition compared to what modern patients experience.

"Djin: Interesting post regarding radiation vs surgical regrets. You'd never know it by this forum. It is amazingly biased towards radiation, although less so lately.

Mel"

when we got here Mel it was heavily biased toward surgery -- the gold standard. good to see things changing. maybe there isn't more regret from surgery guys (i believe there is) but there are surely more permanent SEs......

Here is a thought about why this forum is biased toward radiation. A lot of PCa patients seek surgery as their primary treatment, and it is successful. They move on with their life and don't bother with HW. Others have surgery and it fails, and then they get RT. Prostate cancer is an ongoing part of their life and so this group will be found participating in the HW discussion, and they will understandably have reservations/regrets about surgery as a treatment option. The surgery patients here are a "biased sample" of all surgery patients.

DjinTonic said...
BPH/LUTS adds a big "plus" to the pro-surgery column of the treatment-decision sheet. Whatever one's choice for primary PCa treatment, there is no guarantee of complete oncological success. However, putting an end to BPH symptoms is, in a way, a "for free" bonus that comes with surgery for PCa.

That's assuming the surgery works. I peed like a 25 year old after surgery, but following ART I was back to peeing like an older man again. My RO said the radiation stiffened the bladder. I eventually recovered normal bowel function. No such luck with the bladder.

Just another facet of different treatment side-effects.