JCO series: Art of Oncology Hope and Realism: The Perfect Balance?

Art of Oncology Hope and Realism: The Perfect Balance?

• Shirish M. Gadgeel

JCO published online on March 7, 2011; DOI:10.1200/JCO.2010.34.5348.

• [PDF]

update with patient/consumer/public responses: Patients With Unrealistic Expectations - NYTimes.com

Unrealistic optimism appears common in early cancer trials (patient version HOPE ??)

Blogger Comment: patients call optimism also as "HOPE"

media article: When oncology becomes hope-ology

"EVERY patient with advanced cancer hopes to be the exception rather than the rule. If one explains to a patient that only 5% to 10% are expected to be alive five years from diagnosis – many will to choose on focus on the possibility of life rather than the high probability of death.

In other areas of life – for example in a business proposition – if one were to be told that there is a 5% to 10% chance of success and 90-95% chance of failure, very few would choose to participate in such a venture.

Why is it different in healthcare, and especially in patients with cancer?"...cont'd

Giving Honest Information to Patients With Advanced Cancer Maintains Hope - Cancer Network

Giving Honest Information to Patients With Advanced Cancer Maintains Hope - Cancer Network

"Background: Oncologists often do not give honest prognostic and treatment-effect information to patients with advanced disease. One of the primary reasons stated for witholding this information is to “not take away hope.” We could find no study that tested if hope was influenced by honest clinical information...cont'd"

full free access: Hope and Noncurative Chemotherapies: Which Affects the Other? Journal of Clinical Oncology

Note: references ovarian cancer, factors involved in treatment related decision making "We still do not fully understand the concept of hope and its effects, both positive and negative..."

from the series The Art of Oncology: "Certain Death in Uncertain Time: Informing Hope by Quantifying a Best Case Scenario"

Note: Stephen Gould's writings were extraordinarily popular died in 2002)

"Research informs us that the majority of patients with metastatic cancer desire information about their likely survival duration. The literature also recommends that prognostic information be communicated to those who request it in a manner that is meaningful and realistic, but maintains hope.....The following edited extract from Edward Kennedy’s memoir (and others) conveys the importance of trying to answer these questions....."

"...But I wasn’t willing to accept the doctor’s prognosis for two reasons. The first was my own obstinate will to carry on in the face of adversity, one of the many habits of discipline that my father instilled in me…. The second was the way the message was delivered. Frankly, it made me furious. I am a realist, and I have heard bad news in my life. I don’t expect or need to be treated with kid gloves. But I do believe in hope...."

"....As Stephen Gould published 3 years after reading that his median survival with abdominal mesothelioma was 8 months, “the median isn’t the message.”7 He argued that median survival can be both misleading and discouraging and believed few people have sufficient understanding of statistics to evaluate what the term median
really means....."

Full text - The hope of progress

Note: not specific to ovarian/cancer

full free access: from the series - the Art of Oncology : "Pessimism Is No Poison"

"....The fellow asked the oncologist why he was so pessimistic when talking with the patient. Why did he say things to make the patient and her husband cry? Shouldn't he have given the patient more hope? Would it not have been better for the patient to hear this dire news in chunks over the course of several clinic visits? After all, the patient was so young she may just beat the odds....."

full free access: Jan 2/2010 - Targeted Therapy in Ovarian Cancer

Review Article
Targeted Therapy in Ovarian Cancer
Lyndsay J. Willmott and John P. Fruehauf
Chao Family Comprehensive Cancer Center, University of California Irvine, Orange, CA 92868, USA Academic Editor: Charles F. Levenback

Special Report: NCI Cancer Bulletin - Ovarian Cancer

Special Report: NCI Cancer Bulletin - Ovarian Cancer

Hope with More: In Their Own (Ovarian Cancer) Words

reposted from September 11th: 

Hope with More: ‘In Their Own (Ovarian Cancer) Words’©

September 11th, 2009
Author: Sandi Pniauskas


Still today, less than 20% of ovarian cancers are diagnosed in early stages, primarily one of luck or happenstance. Ever-present are the realities that ovarian cancer is a disease most often en-shrined in significant suffering. This is our past and this is our current reality.

Reflecting on our women’s most intimate and unpublished thoughts, feelings and opinions tells, ‘In Their Own (Ovarian Cancer) Words’, what still has not and is not being heard. This is not the ‘cute’ side of ovarian cancer, although there are moments. Each day brings a kaleidoscope of emotions. With each passing day, the struggles of the fine line between Hope, Reality, Wishes, Expectations and Dreams remain.

We speak as one without boundaries and indeed in many respects ovarian cancer IS the silent killer. Against our will and with significant sacrifices, this ovarian cancer invariably defeats the body and the spirit. I challenge you to listen, as we have, so silently, for so long. A decade of intimate involvement with ovarian cancer women, their caregivers and communities, has most often elicited truisms that stand out. There is Trust between Survivors & Caregivers and secondly, there does not exist, in our world, an ‘ordinary’ ovarian cancer woman.

Trust between ovarian cancer Women and Caregivers is: Hope with More.

Should we choose we might learn much based on these personal conversations. These few words represent a microscopic-sampling of millions of words and thoughts - all valued - all cherished – sometimes dismissed. Sometimes too difficult to b/hear. Sometimes with a huge sigh of relief and humour.

In our communities, many moments are spent living-with-ovarian cancer, often through the eyes of others. As a tribute to our ovarian cancer women, living-with or in-spirit, these are their words to you with that special privilege of Trust and my own personal admiration… in their own words. Some are stunning. All are real.

Age:
A: Ovarian cancer for xx-something ‘dummies’.
L: Older than whom?
I: How dare they write me off.
S: I have wished it was me, not her going thru this . Though I am younger and could be stronger, the truth is I am such a coward compared to her.

Angels & Hope & Friends:
B: I am alive today because of my guardian angel {an ovarian cancer survivor).
B: Spent all day in emergency because I was having a lot of trouble breathing. Good news no heart
attack, no stroke.
R: Please visit me today as I think this is it…. Please visit me today as I think this is it….(X many) … Look after yourself and when you have time, contact me at: 1 – 800 – HEAVEN ext R … Message to R: The line has been kind of busy ....
Y: Friendship therapy is something that has not been explored by the medical community, but it is important for cancer survivors. When I was on chemotherapy, I might just sleep over some days because during those days I was too sick to eat or get up. I was surprised I was enjoying not only the good companies, but also the food when other survivors came to visit me.
L: …will be shutting down the computer now...we’ll see each other completely on the other side.
C: I agree, let’s go, we can. (do this)
C: I think I will lean heavily on philosophy as I get closer to dying. It's that or religion. There's always food! Maybe I'll just eat my way through the fear of death!
S: I have to say that I am not being very gracious here and at the same time not feeling that I should
apologize either. It makes me feel that I am supposed to be wishing you the best when all I really am
wishing for is that you could stay.

CA125:
S: I was 3x years old when I was diagnosed…. I have never had a CA 125 done to my knowledge.
S: It doesn’t matter what the research on the CA125 says - it’s all we have.

Humor:
J: (Dr.) said if his wife was going for (treatment) this is who he would send her to. I hope he likes his wife!!!!
S: I should have read the bio first - psychiatry and 'suck it up' don't really go together.
S: Thanks for living so long! (woman with 150~ + chemo/multiple surgeries TO woman with no recurrence)
L: This disease may have taken my ovaries but has replaced them with a ‘set of balls’.


Husbands/Partners:
D: I watched, as the verdict was read, a tsunami-like wave pass right over my wife’s head, leaving her completely stunned.

Knowledge:
A: Ovarian cancer for xx-something ‘dummies’. (worth repeating)
S: In order to be taken seriously, we (patients) need to understand everything about ovarian cancer.
C: I decided that starvation is the easier death by far….
B: I once read that ovarian is the most complicated cancer, so I figure that I (and the rest of us) must be really special.

Impact:
B: “You need a surgeon and you need one now”. I left his office naively thinking that something would be done and that we could go back to trying to have children.
L: (upon my death) please thank everyone in our group...they are so special.
R: (favourite quote) "Since my house burned down I now have a better view of the rising moon."
F: I always wonder which (ovarian cancer friend’s) death will put me over the edge. I think I am close.

Value and Sense of Worthiness:
K: I feel I am nothing for what this disease is doing to my family (control)….I am not a nothing...I am really a somebody...somebody with ovarian cancer.
L: Let me tell you what is on my mind without cutting me off with "You are so negative!” It is not that I am being negative, these are the facts and I am being realistic.
D: (word games) I Am No Thing. I Am. Not a Thing, or a title, nor am I a summary of accomplishments. I am No Thing because I am not static, not uniform, not in a box, not a disease, not a political party. I am not a snapshot.
C: (published) “Devaluing a Survivor’s Challenge”

We are: PhD’s, healthcare support professionals, lawyers, bankers, physicians, teachers, social workers, computer specialists, nurses, realtors, bankers, e-patients...…Daughters, Sisters, Mothers, Grandmothers

*As matters of integrity, names have not been disclosed, albeit many have given their express permission to do so (past and present)