Perceptions of cancer in society must change — Lancet Oncology editorial

I’d like to draw your attention to a new Lancet Oncology editorial titled, “Perceptions of cancer in society must change.” (Thank you to The “New” PC Infolink site from drawing my attention to it.)

I have commented here at HW/PC and elsewhere several times about how our society’s perception of “the big-C” in general has contributed significantly to the zeitgeist of PC overtreatment…which has single-handedly given prostate cancer a “bad name.”

The problem—discussed in the article—is that historically a diagnosis of cancer was a death sentence, leading to the perception that it is in all cases a dreadful disease which must be caught early and treated aggressively to avoid what would otherwise be a painful and premature death. Although the perceptions are rooted in history, many of us add to that through personal experiences with close family members within our lifetime, and our present society continues to feed this notion. This widely shared pre-conception often leads the patient to make a quick and early decision for treatment, regardless of the risks, or the benefits.

For men with favorable-risk PC, their condition is FAR REMOVED from that image of a rampaging, aggressive disease. The vast majority of men diagnosed with favorable-risk PC are NOT destined to die of their disease, even in the absence of treatment. This is now an unquestioned, well understood fact. Although they both start with a “P,” prostate cancer and pancreatic cancer are very different.

Another recent posting of mine from about a week or so ago in the thread titled “Fewer men estimated to die from prostate cancer” helps shine light on the potential scope of the societal issue. Today we have 2.7M men living who have been diagnosed with prostate cancer, but based on a back-of-napkin calculation we have perhaps over 30M men living who have diagnosable (but not yet diagnosed) prostate cancer. (Go to that thread to check the math, with particular interest to age-groups…the 55-65 age category carries the largest subgroup population, followed closely by 45-55 age. With today’s PC detection capabilities, this is NOT an “old man’s” disease.)

What if all those 30M+ men WERE diagnosed instead of the relatively small 2.7M we have today? Speculate on the impact to society.

While not specifically about the more narrow topic of prostate cancer, the Lancet Oncology editorial speaks directly to the issues which sparked the “Fewer men estimated…” thread here at HW/PC; specifically: i) decreasing cancer-related mortality, and ii) the increased prevalence, or number of people living with cancer.

I’ll reuse the one line that the PC Infolink also quotes from the article which helps emphasize how, in the PC-world, we need to drive an end to how many favorable-risk men are "scared" into overtreatment:

The Lancet Oncology editorial said...
Cancer is becoming an ever-expanding presence in our society, and we would benefit from reconciling its ability to scare and isolate with its ubiquity and survivability.

Now that you are smarter about the big-picture of cancer in our society, what will you do different? For me, this editorial provided additional reinforcement for how us HW/PC "vets" can help influence others. It's an important understanding/message.



LINK to Lancet Oncology editorial: http://www.thelancet.com/journals/lanonc/article/PIIS1470-2045(16)00091-7/fulltext

LINK to 81GyGuy’s HW/PC thread on “Fewer men estimated to die from prostate cancer”: https://www.healingwell.com/community/default.aspx?f=35&m=3589255

Post Edited (JackH) : 3/4/2016 8:02:47 AM (GMT-7)

It does seem that, in general, cancers are moving towards chronic and long term situations for many patients. I have a co-worker who was diagnosed with stage 4, inoperable pancreatic cancer just about a year ago. He is, as of today, still kicking.

I think we probably all know people who are way past the old standard of 5 years and going strong.

So, to the point of the editorial, I agree. As these trends continue, and more and more people live longer with cancer--and many truly do deserve the label of "cured", then the social perspective will change. It just won't happen tomorrow.

Sr Sailor said...
If all those currently 'un-diagnosed' men were diagnosed, the urologists would throw a party, and , I am sure, we would all be invited.


And the DaVinci robot would run 24/7...

I'm not sure we'd be invited, but they would invite their friends and colleagues at Intuitive Surgical, Inc., the makers of the DaVinci robots.

This branch of urology is already the most rapidly growing field in all of medicine, driven by the gross excesses of PC overtreatment. If all those currently 'un-diagnosed' were diagnosed, our health system would sink under it's own bloated weight.

GeetarMan said...
I am thoroughly convinced that were I to have had my prostate removed I would have been one of those men whose post-op pathology would have shown no cancer. And what if I ended up with severe ED, or incontinence? Who would give that back to me?

Agreed. It's really sad and troubling for us "vets," those of us who have been around here for a while, to see guys who are ideal candidates for AS to undergo aggressive treatments which leave them leaking, or with ED, or any of the other long list of side effects...all while their treatment probably did nothing to change their longevity, and often leaves them with "treatment regret." Especially when we see that in the bigger picture the tides are turning to wider acceptance of AS and more rejection of aggressive treatment for low-risk men. In the last 5 years or so, the reported uptake of AS for low-risk men has shifted from close to 10% to close to 50% in some areas. Finally. Overtreatment has given Prostate Cancer a bad name.

Post Edited (JackH) : 3/7/2016 7:23:58 AM (GMT-7)

As most of you know, I was headed to aggressive treatment with my wife holding the operation door open. Only because of my need to "fully" understand the situation before a serious action is taken, did I delay the unnecessary aggressive treatment option. This forum and posters, was a major factor in my AS decision.

In a effort to support the AS treatment message, I make my signature clear on the data/logic of the treatment decision I made. In addition, I explain to my friends/family every chance I get, the value of a yearly PSA with the knowledge of AS treatment. Hopefully, if all a reader understands in my post is my signature info, it will cause them to ask - why not AS?
________________________________________________________________________________________

OCTOBER 2015
Age: 59
PSA: 3.0 elevated to 3.5 in (6) months
3T-MRI: (1) lesion identified
Fusion Biopsy Results: Lesion cores benign, additional (12) cores = (1)5%
Pathology Summary: Grade Group 1 (G6:3+3), 2nd pathology verification
Clinical Stage: T1c

Genetic DNA Profile: Above average risk for Aggressive PC (Genetics Test)
Existing Cancer DNA Profile: DNA risk unknown (Oncotype DX test cannot be performed, <1mm)
High Grade Biological Score: 27% aggressive risk (Mi-Prostate Score)
Other Health Conditions: Diabetes Type II (DX 2000), on meds & insulin

PCa Treatment: "Active Surveillance"
Risk: Undetected Cancer Progression
Risk Likelihood: LOW

My Story: https://www.healingwell.com/community/default.aspx?f=35&m=3528051

Post Edited (NewDay) : 3/9/2016 8:02:10 AM (GMT-7)

Im_Patient, my position exactly. To those who believe that there are hundreds (thousands?) of doctors who are railroading patients into unneeded treatment in the quest for the mansion on the Florida coast, I don't buy it. Are there some in that category? Probably. Are they the majority..or even a significant minority? I don't think so.

My docs all told me I had a minimum of six months to decide on a plan. They provided solid information, and quality informed opinions...and were clear when they were sharing facts vs opinions.

Redwing, yeah, I feel that way too. I've had TWO cancer "cheats". In Situ Malignant Melanoma, and now low-to-intermediate risk PC. I did go to Relay for Life (once) and did feel out of place doing the survivor walk. There are so many folks in such bad shape that it does feel like cheating sometimes.

I think that you are absolutely right.

It's not the PSA test that has given prostate cancer a "bad name," although I think this is a common misconception. Rather, it is PC overtreatment that has given prostate cancer a "bad name" and driven it into the shadows.

I think this perspective is commonly portrayed:
"Oh, you've got prostate cancer? Isn't that where the treatment is typically worse than the disease, and most men are unnecessarily incontinent or limp?"

If we fix the overtreatment problem, the commonly portrayed image of PC improves dramatically.

Actually, Michael, he passed over the weekend. RIP

Great thread.

I wish the criteria for AS was better defined and fairly universal. I researched the heck out of this a couple of weekends ago, and the results were a bit frustrating. Yes, for the very low risk folks, AS is universally recommended. But beyond that category, it's up in the air.

I have 5/12 positive cores with bilateral involvement. All supposedly 6s. I have spoken to 11 well regarded specialists in person and by phone (1 oncologist, a friend; 1 urologist; and 9 radiation oncologists). Most had no financial interest in my case. All recommended treatment sooner rather than later, ie, within 6 months or so, citing the number of positive cores, the bilateral nature of the disease, and my family history (father and identical twin brother, both low to low intermediate risk).

But am I really at risk of having the aggressive form? The Prolaris score suggests otherwise. My PSA has gone down a little, from 1.6 in 2014 to 2.7 last summer, to 2.4 this past Jan and 2.2 last month. And it's obviously not alarmingly high to begin with.

Still, I can't ignore 11 different specialists' recommendations. I just don't think that would be wise. If I went to 11 attorneys on an issue and all agreed, but I opted to do something else, would that be prudent?

So I will start CyberKnife in a couple of weeks. Interestingly, my twin is opting for AS with essentially the same profile as me, although he has a +DRE and I don't. I guess he'll serve as my control......

halbert, sorry you recently lost your friend to pancreatic cancer.


dcd55, you raise a good point with your comment, "Still, I can't ignore 11 different specialists' recommendations." Physicians are "specialists" because they have committed time & energy to become more competent in a specific narrow field...9 of the 11 specialists you saw, for example, specialize in some aspect of radiation oncology.

What is common knowledge, and you should be aware of, is that "most prostate cancer specialists in the United States believe AS effective and underused for low-risk prostate cancer, yet continue to recommend the primary treatments their specialties deliver." This quote came from a study (we needed a study to state the obvious) published in the journal Medical Care which went on to distinguish that the majority radiation oncologiest in specific claim to believe AS is both effective and under-used in the US, yet they recommend and endorse AS for their own appropriate patients only a small minority of the time.

Did you see anyone who specializes in Active Surveillance, or did you at least ask them what percentage of their PC patients are on AS?

Study link: http://journals.lww.com/lww-medicalcare/Fulltext/2014/07000/Perceptions_of_Active_Surveillance_and_Treatment.3.aspx