Thoughts About the term "Exceptional Survivor"

Bestbird

In 2015, I began doing informal research regarding mbc "Exceptional Responders," patients who responded unusually favorably to a specific protocol. Indeed, there is much opportunity to explore why patients with seemingly identical disease characteristics fare so differently on the same therapy. I shared this interest with the Metastatic Breast Cancer Alliance ("MBCA"), a consortium of organizations of which I am an individual member. The MBCA has welcomed my input regarding this concept, for which I am grateful.

There is also interest in understanding why some mbc patients considerably outlive their prognosis. In my prior research, I initially alluded to these patients as "Outliers." However, this term is being used by some researchers to describe patients at either end of a treatment spectrum. Hence I am wondering whether the term "Exceptional Survivors" (or possibly a different term) might be more viable.

If you have an opinion either way about the using term "Exceptional Survivor" to represent an unusually long lived mbc patient, I would be grateful for your input along with any suggestions you might have.

From a timing perspective, if you might be willing to share your thoughts by Sunday evening, May 1, it would be deeply appreciated!

With thanks and best wishes to all.

exbrnxgrl

Hi Bestbird,

I have no problem with outliers, since the term as always implied, to me, that we don't know why someone falls outside the norm. This is indeed the case when it come to those with MBC who defy the odds. I can't really get behind "Exceptional survivor", because the odds are very high that I will not survive MBC, in the long run.

Caryn

Bestbird

Caryn's response (thank you!) made me realize that I may have caused some confusion regarding my question, so please accept my apologies!

A little background: It is recognized that the prognosis for someone with mbc is 2 to 3 years. If someone outlives that prognosis by several (as yet an undetermined number of) years, then they would fall into the category of people who have considerably outlived their prognosis.

Personally my thought would be that anyone who survives this disease for 5 or more years (twice 2.5 years, the halfway mark between 2 and 3 years) would be classified into this category, although official criteria is still undetermined.

I'm reluctant to use the term Outlier because it may cause confusion in the research community, given that "Outlier" has occasionally been used for patients who respond to a specific therapy either really, really well or really, really poorly. In the case of long-lived patients, some may have responded well to a specific therapy or therapies, and others may have run rapidly through multiple therapies. Furthermore, it's possible that a very small number of persons may not be on any therapy whatsoever, or that they had a "radical remission."

So what might we call this versatile group of unusually long-lived people with mbc? Exceptional Survivors? Something else?

Many thanks for sharing your thoughts!

Kjones13

I can see why outliers could be confusing for researchers. People on both sides of the curve. What about using exceptional responders to describe the people you referred to as outliers. And coming up with a different descriptive word to replace exceptional? Does that make sense? Exceptional to me says in the top percentage. Maybe excellent responder? So, what I am trying to say is bump up exceptional to replace outliers and then excellent to replace exceptional.

I don't know. I'll think more about it

Zillsnot4me

I like excellent responder.

GatorGal

Bestbird, I understand the need to change from outlier for your purposes. I celebrate my 8 year cancerversary this May. I wouldn't call myself an excellent responder. Many of my treatments lasted very short times, either due to side effects or progression. I know I am not alone here. Looking for a term that would describe someone like me became my goal. Miracle came to mind first but immediately knew that wouldn't fly with a lot of people. Then I thought of stubborn, as to stubborn to die. LOL! I thought about rarities but felt that made me sound like an alien. LOL! I finally settled on simply "exception."

Good work you do for us! Wish I had some of your energy,

Love, Glenna

Longtermsurvivor

Good morning, dear Bestbird!

What intriguing questions you ask.

You touch upon something I've pondered for many years - the mystery of my long term survival with both my rare genetic condition and advanced breast cancer. Either could and should have killed my body many times during my lifetime. But, here I am living proof of something.

I'm clearly not an exceptional responder, because I can't point to any one or any combination of treatments keeping me alive. My survival can't be explained by any medical interventions. Though they've certainly helped, some have certainly hindered.

Bestbird, I've tried, unsuccessfully, to come up with a recipe or reasons for my survival, because I want to pass it on. What a great humanitarian legacy that would be.

Alas, that's not possible.

Over many years, we've talked about cancer as a gift and cancer as a journey.

It's not a gift, if we don't accept it. And acceptance comes at the end of Elizabeth Kubler-Ross's DABDA* sequence described of the terminally ill, but widely applied to the grieving. I, like many others, take exception to this sequence and the rigid way it's been applied to a life-changing process. But, it's an interesting transformational metaphor to contemplate.

Because I live in Joseph Campbell land where "the hero's quest" and the journey metaphors are strong, I've had no problem adopting that imagery. Like many a heroine, I had to leave my comfortable home on a quest for healing. Along the way, I experienced many losses, but also met many healing allies, learned and grew as a person, have been able to accompany others and I've been transformed through the process. Death has been a frequent teacher, as have pain, illness, service, transcendence and joy.

Lawrence LeShan's Cancer as a Turning Point was published just two years before my diagnosis and in 1992 I attended my first Cancer Help Program at Commonweal in N. California.

That program probably saved my life as much as anything, because I got a deep and true inner orientation to what would be required of me to engage my challenges and to live healthy with cancer.

My Buddhist teacher friend recently said," illness isn't a gift. Awareness is the gift."

It's our awareness that allows us to engage and transform, not the illness.

Bestbird, while I still don't have a recipe for success, I am grateful for my unique experience. And, I do so wish I could share it with others.

Peace of mind and heart are the greatest gifts of this journey.

And loving friends like you and those I've met along the way.

Hope this provides a different, though not contradictory, perspective to your exploration.

Well wishing for all, Stephanie

* Denial, anger, bargaining, depression, acceptance.

Bestbird

Thank you for your excellent and thought provoking input! I had to smile at Glenna's tongue in cheek mention of "Stubborn," which probably applies to most if not all of us!

Coming up with appropriate vernacular can be a complex process. For example, if we call patients who do outstandingly well on a given therapy "Excellent" Responders, then the inference is that by contrast the group of patients who fare really badly on the therapy are "Poor" Responders. Although that is true, I'm not sure that anyone might appreciate the term "Poor" being applied to their response, or even by proxy to them! But if we refer to patients who do really well on a given therapy "Exceptional" Responders, there may be a bit less negative inference regarding the group who didn't fare so well (I am working with the MBCA on terminology for the group of patients who did not respond so well to a therapy).

As is the case for Glenna, Longtermsurvivor, and some others, they are in the group of mbc patients who've considerably outlived their 2 - 3 year prognosis no matter how many or few treatments they've been on and no matter who well (or not well) they may have responded to those treatments. Calling patients in this group "Exceptional Survivors" came to mind!

Stephanie, thank you for your kind sharing. If only there were a formula to success! Yet if we begin to study in earnest patients such as yourself, Glenna, and others who outlive the statistical norm, maybe we'll be on to something, and that "something" doesn't necessarily need to be limited to drugs alone.

DivineMrsM

I like the term outlier because it sounds more current and doesn't sound medical. Using an adjective to describe what kind of outlier might work, something like longterm or longstanding outlier, or exceptional outlier or enduring outlier.

Here's a definition for outlier that I found:

Statistics.

1. an observation that is well outside of the expected range of values in a study or experiment, and which is often discarded from the data set: Experience with a variety of data-reduction problems has led to several strategies for dealing with outliers in data sets.
   
   
2. a person whose abilities, achievements, etc., lie outside the range of statistical probability.

---

Survivor isn't a bad word either, tho I'm not partial to it. Looking up the definition it says:

a person who survives, especially a person remaining alive after an event in which others have died.

the remainder of a group of people or things."a survivor from last year's team"

a person who copes well with difficulties in their life."she is a born survivor"

Bestbird

I'd truly love to use Outlier in some way, but am concerned that since the term is already being used by clinicians to refer to patients at either end of the spectrum relative to response to a specific treatment, it might be confusing to apply "Outlier" to the group of patients who've outlived their mbc prognosis irrespective of treatment.

According to the thesaurus,

Synonyms for "survivor" are: stayer, sticker, fighter and toughie. There's already been a lot of ambivalence expressed about "fighter" so we would probably want to refrain from using that, and the other three words are not terribly illustrative (nor do they sound professional).

Synonyms for "survive" are: endure, persist, outlive. To transform them into a noun, we'd need to say Endurer (which has a more negative than positive connotation), Persister (sounds like someone tugging at apron strings!) or Outliver, which may bring to mind liver mets coming out.

All responses and opinions received thus far are appreciated, as are any future ones!

AmyQ

Exceptional Survivor to me is preferred as it's hopeful and unique all at the same time. I've been hearing outlier referred to in so many run-of-the-mill ways lately it no longer makes it sound truly exceptional. Just my two cents.

Amy

ShetlandPony

For some reason Garrison Keillor's Lake Woebegone stories come to mind: "BCO, where all the women are strong, all the men are good-looking, and all the survivors are above average."

But seriously, the word "survivor" has so much baggage at this point, I'd rather find another word. But I haven't found one. The word has the advantage of being a noun that indicates the correct side of the curve. I do think "long-term survivor" is simple and descriptive. Bestbird's term "Exceptional survivor" is not bad. Or how about "Beyond-prognosis survivor"? "Atypical survivor?"

I don't like the term "responder" because it assumes the person lives a long time because they responded to treatment, when it could be the case that it was something about their own physiology/lifestyle/genetics that allowed them to outlive their prognosis. That's part of what we are trying to find out.

I like suersis' and Divine's idea of a word to go with "outlier" that makes clear which side of the spectrum, such as "positive" or "negative". But those two words have so much --er-- positive and negative connotations. What about "long-lived outlier" and "short-lived outlier"?

It pains me to even type that last word. I want us all to be "above average".

ShetlandPony

I see what you mean, sue. I think "short-lived" does sound blunt compared to "negative" which is meant to be more of a mathematical term in this context. Unfortunately, "positive" is a little bothersome to me because I resent the command we sometimes hear to "Be positive" (in our thinking) in order to survive cancer. It would be bad if the word reinforced blaming the "negative outlier" for not being positive enough.

Linda11111111

How about PRO? Positive Results Outlier.

Bestbird

ShetlandPony, perhaps we might add, "...and the posts are resplendent with irony!"

May we all be blessed with a far-above-average outcome.

Fitztwins

I like A-typical Survivor, but I really like Exceptional Responder. I don't know what I am doing differently than anyone else in my long term survivor (8 years mets, 12 year since original stage IIIc). I have failed a few treatments, overall I feel it is the "tempo" of my disease, it grows, but seems to be slow that may contribute to my overall success with treatment?

I too feel much guilt over responding to treatment. People tell me its my attitude, or my research, no, to me its just dumb luck.

Longtermsurvivor

Okay, I'm going to really date myself here, by offering another perspective.

Most of you haven't been in the cancer world long enough to receive multiple copies of Bernie Siegel's Love, Medicine and Miracles: Lessons Learned about Self-Healing from a Surgeon's Experience with Exceptional Patients.

I read it when it was first published in 1986 and when diagnosed in 1991, received many copies of the best-selling book that explained Siegel's work with Exceptional Cancer Patients, ECaP. He even developed a program on the east coast that helped many patients achieve a level of health and well-being that changed the standards of cancer care.

Unfortunately, he also alienated many of his more hard-line, materialistic professional peers by suggesting that his mind-body-spirit methods improved both quality and quantity of life for his patient-participants.

Here's something from his website:

In 1978 he (Bernie Siegel) originated Exceptional Cancer Patients, a specific form of individual and group therapy utilizing patients' drawings, dreams, images and feelings. ECaP is based on "carefrontation," a safe, loving therapeutic confrontation, which facilitates personal lifestyle changes, personal empowerment and healing of the individual's life. The physical, spiritual and psychological benefits which followed led to his desire to make everyone aware of his or her healing potential. He realized exceptional behavior is what we are all capable of.

And here's a People Magazine story on his work:

September 21, 1987 Vol. 28 No. 12 Dr. Bernie Siegel's Prescription for Cancer Victims (and a Best-Seller): 'Patient, Heal Thyself' By Ken Gross

Although I've got a 30-year long memory of the term, Exceptional Cancer Patients, and am outside the norm, it may still ring bells for more conservative members of the medical establishment. And for cancer patients who don't believe his basic assumptions.

btw, I'm on the west coast, so Siegel's east coast approach is very diluted here.

Something else to consider when branding a new name for us...whatever we're called.

PS, my screen name, Long Term Survivor, was chosen tongue-in-cheek. I don't refer to myself as a survivor in conversation or outside this forum, out of respect for all who've died of this disease. And I could only claim to be long term, because I am. And because I continue to suffer the long term effects of both the disease and current and prior treatments.

Noni

How about simply patient? Exceptional patient?

Or Super Hero!

DivineMrsM

Fitz, I hope you would banish any and all feelings of guilt for responding to treatment. Your good response does not mean you are taking away from anyone else's good response. It's not like there are only a limited number of good responses allowed. There can be an unlimited number of good responses. I have had a good run of stability and do not feel guilt. I feel bad when I read others on here who write that they feel guilt for their good response to treatment and they don't share their good news because of the guilt. Yet it is great inspiration to others to know that such longevity can be had even with stage iv bc.

50sgirl

Fitz, I agree with DivineMM, You should not feel once twinge of guilt. I am less than a year from my dx, and I have no idea how long I will live with this disease. I have set 20 years as my goal, and I am living my life believing that I can achieve that goal. Maybe someday I will increase that goal, who knows. It is people like you and Divine and Stephanie and so many others here who are giving me hope and encouragement to live my life the way I do. Many here have lived well past the statistical longevity expectations that I have chosen to ignore. I have found lots of support on these boards and have been given valuable advice, but another reason that I log in every day is to read positive stories that are included in posts from people like you who continue to reach milestones that seem like incredible gifts. I mourn for people we lose here, but I joyfully celebrate every piece of good news I see here.

Celebrate the life you have.

Lynne

JeninMichigan

I like exceptional responder or survivor . Either one. I am over 8 years out and almost 8 years NED. So I fall into this category. I realize this term only says I have significantly outlived the statistical survival time with MBC. It is the exception to the rule. And I think I prefer responder as I responded to treatment better or longer than most. I am sort of sour to the word survivor.

Jennifer

Bestbird

Noni, thank you for your suggestion! I've got mixed feelings about using the word "patient," as some (although probably only a small percentage of) exceptional survivors may not be in any type of treatment.

Stephanie, I remember Bernie Siegel's work quite well! I once wrote him a letter to which he responded promptly and with great courtesy!

A member named Pink Steel Magnolia on another forum suggested the term "Extended Survivor." I'm thinking that may sound better than "Exceptional Survivor" and welcome any and all feedback!

ShetlandPony

Yes, I think "extended survivor" sounds better than "exceptional survivor". And it still works as, hopefully, treatments improve enough to enable so many more people to achieve that status, that they won't be exceptions anymore.

Heidihill

How about extended responder?

Bestbird

I'll bring up the term "extended survivor" as an option!

Heidihill, extended responder sounds good, but as I think about it, it might potentially be misleading because some patients - probably a small percentage - may not be on any therapy at all, hence they wouldn't be "responding" (as might inferred regarding response to treatment).

Thinking of a classification for this group of people who have outlived their prognosis is a bit like playing chess - so many possibilities and so many things to consider!

All suggestions and feedback are appreciated!

Tina2

If "patients," "survivors" and "responders" are nouns that pose limitations or perception issues, how about simply "Exceptionals," as in "Millennials?"

Tina

Bestbird

Tina, I love "Exceptionals!" The thing is, we need to distinguish between the cohort of patients who have an exceptional response to a specific treatment, vs. those patients who have considerably outlived their prognosis irrespective of the type and volume of treatment(s) they've received. That's the dilemma!

Tina2

Bestbird, then don't you need two new designations? How about these?

Supraresponders or Super-responders: the cohort of patients who have an exceptional response to a specific treatment.

Suprasurvivors or Super-survivors: those patients who have considerably outlived their prognosis irrespective of the type and volume of treatment(s) they've received.

Tina

Bestbird

Tina, thank you! Indeed, the two categories are different: the first category groups patients who respond exceptionally well to a given tx, and the second category groups unusually long-lived patients together irrespective of their treatment(s), if any. Supravivors has a nice "zingy ring" to it. Many thanks!

Longtermsurvivor

Hi Bestbird,

I see that your deadline for feedback is tonight.

Tina's suggestion about two separate terms (responders and survivors) is good. There will be a lot of overlap and gray area between the two groups. I think it's impossible to sort out what cause led to what effect, especially when we've lived a long time with so many inputs and experiences.

Also, I don't like to think of myself as exceptional, but maybe a trend-setter in longevity with cancer.

Of course, it gets back to the old, "can I bottle this recipe for success" and give it away to all comers? That's currently impossible, but I'm so grateful that you are looking into the ingredients and actions. Maybe it is like a recipe - one part ingredients, one part preparation, three parts good fortune/luck, lots of perseverance, and hope the soufflé doesn't fall when a door slams at the wrong moment.

The truth is in the baking and until the dish is finally served, maybe we won't be able to taste the outcome of all our intention, motivation, treatments, devotion...maybe.

So many unanswerable questions well worth pondering.*

Sending much love and good wishes, Bestbird, Stephanie

* "Be patient toward all that is unsolved in your heart and try to love the questions themselves, like locked rooms and like books that are now written in a very foreign tongue. Do not now seek the answers, which cannot be given you because you would not be able to live them. And the point is, to live everything. Live the questions now. Perhaps you will then gradually, without noticing it, live along some distant day into the answer."

― Rainer Maria Rilke

DivineMrsM

"Sustainable Outliers And Responders"

SOAR

Sustainable defintion-able to last or continue for a long time; the capacity to endure