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Taiho Oncology
A presentation by NowWhat
mCRC Patient Journey
DEC 8, 2014
Workshop Agenda
Breakfast + Introductions
Insights Deck + Journey Shareout
Journey Discussion
Lunch
Ideation Session + Breakout Groups
Winning Worksheets
8:30-9:00
9:30-11:30
11:30-12:00
12:00-12:30
12:30-2:30
2:30-3:00
3
Contents
Background
I
Overarching Insights
II III
Patient Profiles
IV
Journey
V
Now What: Ideation
overview of project goals, methodology, and sample
I
Background
4
5
Illuminate the patient journey from a functional and emotional perspective, delving into what it’s like to live with metastatic colorectal cancer.
Explore the barriers for 3rd and 4th line treatment initiation – from a functional, physiological, and emotional perspective.
Identify the barriers for 3rd and 4th line treatment compliance and strategic solutions for overcoming said barriers.
Generate a series of support and/or adherence ideas to help for a more successful mCRC patient experience.
The Project Goals
6
GATHER what’s known today (about disease state, product profile, current stakeholder knowledge) to better identify what to learn tomorrow.
Immersion
GROUPS with medical professionals that are on the front lines will bring more nuance to our understanding of the patient experience – providing key inputs for creating a strawman journey
• 1 in California
• 2 in Massachusetts
• 1 in Colorado
• 1 in New York
Medical Deep Dives
Methodology
SHARE out early insights and a strawman journey map in order to fuel collaboration and push the thinking forward.
Strawman Workshop
Over the course of several weeks, we will hear from patients and caregivers about what it’s like to live with the disease and their perspective on treatment initiation and compliance.
• 1 in California
• 2 in Massachusetts
• 1 in Colorado
• 1 in New York
Patient & Caregiver Conversations
Working with our geriatric psychologist, we will pressure-test and add dimension to our leading insights.
Behavioral Psychologist Input
A highly strategic and well-designed insights report to be shared during a half-day presentation. We’ll also craft a beautifully designed journey map.
Team brainstorming and concept development for patient marketing and services.
Insights Preso & Innovation Camp
Other words
Concepts Shareout
WE ARE HERE!
revise
7
II
Overarching Insights4 key truths about the mCRC patient experience
8
3
mCRC Changes People
While each mCRC patient is unique, there are some key commonalities among patients. There
are unique behaviors and values that set these individuals apart from ‘normal’ people. These
attributes are integral to how they operate throughout their life with cancer, and are not
specific to any point in the journey.
9
We rely on our bodies to be strong, to protect us, to allow us to live life the way we so desire. Being diagnosed with cancer changes the way these individuals interact with their bodies. While they were once able to rely on their body for strength, it now feels as if their body has let them down. Cancer is seen as an intruder, taking over what was once theirs. They feel betrayed by the one thing that’s supposed to protect them.
Betrayed by their own body
“I got diagnosed at 45 and prior to that I was the epitome of health…160 lbs., 5’10’’ and all my blood work was A+. I had never really been sick.”
– Robert F
“I never had any real symptoms. I never had blood in my stool and there were only a few times I felt nauseous. I ran a 5K, and thought that was where my fatigue was coming from.”
– Tiffany
10
Not all cancers are equal when it comes to what you can and can’t talk about. These patients often feel uncomfortable talking about their colon and rectum, a topic not well discussed with others. This makes it difficult for patients to open up to others about their symptoms, both pre- and post-diagnosis.
Holding this in can put added emotional pressure on patients. When they need support most, they are more concerned with stigma than opening up about this life-altering experience. This can lead many to feel isolated and alone in their fight.
It’s not easy to talk about ‘down there’
“Since cancer, I have become much more of an introvert. I don’t want to be around people. I go to a weekly support group. That is my ‘people infusion.’”
– Jeanne
“It was so taboo to talk about your butt and your bowel movements, so I didn’t tell anyone because I was embarrassed. It was not acceptable for women to have colon cancer.”
– Fran
11
As humans, we gain strength and security from the feeling of power we have over our lives. We take for granted the ability to do seemingly simply things that enhance this sense of powerfulness. But cancer takes this feeling away, leaving patients feeling powerless to control their illness. Previously independent individuals are no longer in control of many other aspects of their life, as well. Side effects, symptoms, diminished health and energy all threaten their ability to regain power. They thus seek to gain their power back in different, seemingly insignificant ways. Being in charge of taking their medication, doing things on their own, and contributing to the family are all small ways that patients seek to tip the scale of power back in their favor.
Losing their power
“At one point, I went through a depression phase. I wasn’t working and felt like I couldn’t help out my family. I felt like a failure. But I help my children out in my own way, like with their homework, so they feel like they can depend on me.”
– George
“I lost the person I was. I always wanted to be in control – with work, my home life, my family – and I don’t feel like that person anymore. I feel less confident, less sure. The most confident I feel is when my husband is with me.”
– Tammi
12
Regardless of segment type or whether the patient is still on or has made the decision to stop treatment, a glimmer of hope is always there. No matter how realistic about their situation, every patient leaves the possibility open for a cure, ‘miracle’ or even just a little more time, even when they have been given no probable reason to expect it.
It is this glimmer of possibility that gets them through, that sustains them. Hope, however minimal, allows patients to endure through the suffering, pain, and sadness of fighting cancer.
Pervasive Hope
“The doctor’s view is that he has had other patients like me that have lasted 15-17 years, and there are times that the drugs that stopped working start working again and you can go back to them. And there are other drugs that we haven’t tried. I’m not willing to give up yet.”
– Steven
“The central hubs of support my children and wife. If I have just a little longer, I can see my daughter walk at graduation, I marked the date on my calendar…I Google Colon Cancer articles every morning…and I just hope I live long enough to find the silver bullet, the one that cures me.”
– Robert F
13
IIIPsychographic SegmentationUnderstanding the different mCRC patient personas
14
A change of thought
Going into our conversations with patients, we imagined that the differences between patient types would come down to who was willing to
fight and who simply wasn’t. We were surprised to find that all of our mCRC patients were, in fact, fighters. It wasn’t whether they fought cancer that was important, it was how they
fought that ultimately separated out the different patient segments.
15
Grounding in Psychology
The Theory of Cognitive Adaptation is a lens on resiliency and adaptation to a threatening event, in this case an mCRC diagnosis. It details that the ways in which an individual processes and copes with the event will be largely influenced by their own self-concept. One’s self-concept is built of two facets – how one sees the world, and how one sees themselves. An individual’s self-concept is deeply ingrained in who that person is and activated when they experience hardship, defining the ways in which patients fight throughout their journey.
Theory of Cognitive Adaptation
16
The Y Axis: How I See Myself
Patients who have an internal sense of agency believe that they have the power to influence the situations they find themselves in. When threatening events occur, they feel that they have the influence to affect change in their own life. They find the strength to fight cancer within themselves, and rely less on others to cope. Patients who have an external sense of agency see themselves as powerless to influence the situations that happen to them. When threatening events occur, they blame the event on outside forces beyond their influence. They are more likely to find the strength to fight within others and rely on external support to cope.
Ho
w I
see
my
self
Internal
External
17
The X Axis: How I See the World
Patients who have a more illusory worldview see themselves and their journey in slightly more positive, less realistic terms. They are often more optimistic about situations because their worldview protects them against negative assessments. They perceive that things will go well, despite potentially contradictory evidence of statistics or past experience.
Patients who have a more realistic outlook on the world tend to see the truth of the matter, and take in each situation at face-value. They more accurately perceive both the negative and positive aspects of a situation. While seemingly pessimistic, they are not being negative, merely more accurate and realistic in their assessments.
How I see the worldIllusory Realistic
18
Putting it all together: Our mCRC Personas
The Independent
The WithdrawnThe Follower
The Self-Advocate H
ow
I s
ee m
yse
lf
How I see the world
Internal
External
Illusory Realistic
Meet the Self-Advocates
I never thought I was an optimist, but when mortality stares you in the face it’s not worth it to feel bad for yourself. I feel really lucky that I’ve survived this long. People use the word ‘cancer survivor’ but I see myself more as a fighter. When it comes to treatment I can always keep going, I’m willing to try anything if it might work. Having cancer has affected my relationships with other people, it’s made me a warmer person, with a greater appreciation for the world.
ILLUSORY
INTERNAL
REALISTIC
EXTERNAL
“
“
On the Spectrum
Information Needs
Self-conceptInternal + Illusory
Outlook on Future
Relationship with Oncologist
Self-Advocates have a self-enhancing outlook on life that makes them well equipped to fight. They view the world with rose-colored glasses and feel confident that they can be the exception to the rule and beat the odds. They are driven by self-power.
This persona is optimistic about their options, always holding out hope for a breakthrough or a cure. Their goals for treatment are always to either shrink or cure their cancer and they are willing to do whatever it takes to get there.
“I have cancer, but I ultimately control what my life looks like.”
Self-Advocates trust mainly in themselves, but do see their doctor as a valued partner in their treatment. A trusting relationship is important to them, so they will switch doctors if they feel like it’s not a good fit.
Constantly researching to find a cure or a miracle.
Support NeedsFind the support they need in themselves.
Outlook on Cancer
Fighting Mentality
THE SELF-ADVOCATE
Meet the Independents
Success for me means normalcy – being able to continue living the life I want, on my terms. The goal is to live for as long as possible, as comfortable as possible. I’m pretty matter of fact about my cancer, which can put some people off, I guess. But I’m the one in charge of my treatment, only I know what’s best for my body. I refuse to be cattled, this is my life and I’m going to live it on my terms. People shouldn’t be scared to have a voice – don’t let anyone push you into anything you don’t agree with.
ILLUSORY
REALISTIC
THE INDEPENDENT
“
“
On the Spectrum
Information Needs
Self-conceptInternal + Realistic
Outlook on Future
Relationship with Oncologist
Independents are strong and aren’t afraid to fight – but they are also realistic. Their main focus is doing what’s right for them, and coping by finding ways to feel powerful. It’s very important for them to do things on their terms to reaffirm their sense of self.
This persona is realistic about their future, and see themselves as the rule, not the exception. They know that death is on the horizon, but hope to maintain a sense of normalcy and control until that time. It is important to enjoy the time they have left.
“I have cancer, but I won’t let it take my dignity or quality of life.”
Independents like to to be the one to call the shots. They trust in themselves, not the oncologist, to know what’s personally right for them. They are focused on doing what’s best for their body, but also their mind and lifestyle.
Avid researchers to stay updated on their chances.
Support NeedsSupport themselves by trusting their body.
Outlook on Cancer
Fighting Mentality INTERNAL
EXTERNAL
Meet the Followers
Getting the diagnosis came as a serious blow to my family and I, but we overcame by becoming more spiritual. Having cancer has changed every aspect of my life, but not all for the bad. I feel very blessed because I’ve been able to learn more about myself and who my real friends are. I try to appreciate everything I have, including my doctor who guides me. I trust what he tells me, and simply hope that god isn’t done with me yet. I have more to do here on earth.
ILLUSORY
REALISTIC
“
“
On the Spectrum
Information Needs
Self-conceptExternal + Illusory
Outlook on Future
Relationship with Oncologist
Followers gain strength from their faith (whether in religion or just spirituality), believing that there is a reason why they have cancer. They see their fight as a positive influence on their life, teaching them how to be a better person and live a fuller life.
When looking to the future, Followers hold out hope for a cure, but trust that everything will work out as it should. They believe that their faith will protect them, and that there is a plan for their life. They view the future in a positive light.
“Cancer has taken over my life, but it’s made me a better person.”
Followers trust in their oncologist to guide them in their treatment. They need someone else to lead them, and will typically follow anything the doctor says, unless they are told they our out of options – then they will find a new doctor whose outlook matches up more accurately with theirs.
They will research what their doctor prescribes them.
Support NeedsRely on friends, family, and doc for support.
Outlook on Cancer
Fighting Mentality
THE FOLLOWER
INTERNAL
EXTERNAL
Meet the Withdrawns
I know where this leads, so I don’t get my hopes up. My husband tries not to talk too much about my cancer, because he knows I’ll worry about it if he does – I tend to worry a lot about things. I need someone to talk to, but support groups often make me sad. My doctor helps me a lot, as someone to talk to and also to tell me what to do. I don’t do much research on my own because I read something once that said I wouldn’t live more than 5 years. That got me worked up and I don’t want to be filled with all of that fear and anxiety so I take my doctors word for it when he tells me what to do.
ILLUSORY
REALISTIC
“
“
On the Spectrum
Information Needs
Self-conceptExternal + Realistic
Outlook on Future
Relationship with Oncologist
Their vision of the future is rather bleak, as they know it’s just a matter of time. They see themselves as the rule, and feel like they are not in control of their own lives. Their goals are rather small or everyday and within their realm of control.
“Cancer has taken over my life and I am powerless against it.”
Withdrawns put a lot of stock in what their oncologist says, and will blindly follow their lead. Their oncologist keeps them fighting, but when options run out this persona isn’t likely to keep looking for new options.
Generally withdrawn from info sourcing, rely predominantly on doctor for information.
Support NeedsGenerally come off as very needy, thus often have trouble finding true support.
Outlook on Cancer
Fighting Mentality
THE WITHDRAWN
INTERNAL
EXTERNAL
Withdrawns pull their strength from those around them. They feel like they are powerless to control their cancer, and realistically know what the future holds. They often use avoidance to cope, as the reality of their situation can be overwhelming.
Meet the Caregivers
I never thought I would hear the word cancer. I had to stay strong, but I was dying inside. I try to take things one day at a time because being a caregiver means being there 24/7. I have to be the one to know what to do in any situation and there’s no time for emotions. I wish there was a class on how to be a caregiver, how to treat them, how to treat the situation. There isn’t a lot of information out there. But we’ve had a good life. I know what’s going to happen and that I’m going to be alone. I only hope that when it comes that I know how to face it.
“
“
Support Needs
Information Needs
Outlook on Future
Relationship with Oncologist
Caregivers must face a future without their loved one – a future alone. They understand that this will be their future, but have no way to navigate what this will look like or how they will bear it. Caregivers fear what this will be like, but rarely talk about it.
“Cancer has changed everything about my life, yet I don’t have it.”
They often must have a relationship with the doctor, as well. In the oncologist’s office, caregivers often have to be the one to take notes and ask logistical questions, all while also processing potentially heartbreaking news.
Caregivers are often active researchers, even taking over when patients are weak.
Support GivenSee themselves as the
sole supporter of patients, bearing the weight of their struggle.
Outlook on Cancer
Fighting MentalityWhile not physically suffering from the illness, the
CG’s whole life revolves around the fight against cancer. They fight by supporting their loved one, taking sole responsibility of the household, providing for the family, and keeping everyone together.
Caregivers take on a lot when their loved one is diagnosed with cancer, and get little support in return. They take on additional responsibility and often feel like they’re carrying the burden of their loved one’s care. All of this, without much in return. They crave support in the following ways:
• An escape from cancer, a moment to feel normal again
• Time to process their own feelings• Information about how to give care• Help in the day-to-day struggle• A way to map a new course in the
future – both emotionally and logistically
24
IV
Journey in DetailExploring key moments in the emotional journey
25
A note on the Journey
Just as every individual with mCRC is unique, so too is their journey. While the story we tell in the following slides is true to the overarching
patient experience, it should be noted that there are many opportunities for difference,
depending on the individual. At any point in the journey, a patient could opt for radiation, need surgery, or decide to stop treatment. That being said, most individuals travel the path we’ve laid
out in the following slides.
26
Hold for sketch of journey from designer
Journey Overview
Pre-DiagnosisTreatment Moments that Matter
“In 2006, I began noticing a change in my bowel habits, but I always attributed it to not eating very well. My doctor treated me with prescription iron for a year. But I had reoccurring hemorrhoids. I woke up tired, came home tired, and had uncontrollable gas and diarrhea. I began eating ice more than food, which my doctor just laughed at. My stomach was killing me, but he thought maybe it was jus IBS and referred me to a gastroenterologist, who then scheduled a colonoscopy and took a biopsy. I called the 24-hour nurse line, who told me to go to an oncologist.”
- Fran
Pre-diagnosis: Patient Spotlight
29
Whether they had been declared cancer-free from their first diagnosis, or never diagnosed at all, these individuals are bright-eyed and able-bodied, thriving in their professional and personal lives and spending time with the people they love the most.
Though gradually, they began to experience symptoms like rectal bleeding, abdominal pain, or constipation.
They push it to the side as a minor discomfort and self-treat with over-the-counter medicine, diet changes, and supplements. Active and confident, they don’t take the pain as a serious threat to their health.
PRE-DIAGNOSIS
DISMISSIVEas symptoms appear in otherwise healthy individuals
1
“I told my coworker how my stomach wasn’t feeling right, and she recommended Metamucil, so I took her up on that advice because it was so casual.”
- Michelle
30
With their self-treatment providing no relief, all the abnormalities in their body steadily pile up without leave, and they seek to find the root of the cause.
They go to their general practitioners or even the ER if the pain becomes unbearable, but they are sent off with a minor diagnosis that misses the true culprit. As the sickness fails to subside, they are confused by their bodies and know that something is still not right.
PRE-DIAGNOSIS:
PERPLEXEDas they seek medical attention
“I had total blockage and hadn’t used the bathroom for weeks. I couldn’t put the key in the door because my stomach hurt so bad. I went to the ER and they sent me home with a diagnosis of constipation.”
– George
1
31
Due to the persistent digestive issues they experience, they visit their general practitioner again who turns the red flags over to a gastroenterologist.
Their gastroenterologist tells them their pain could be warning signs for a more serious problem and schedule a colonoscopy to evaluate the inside of their colon.
PRE-DIAGNOSIS
CONCERNEDas they are referred to a gastroenterologist
1
“My doctor said I was clotting and looked like he saw a ghost when he realized where it was coming from. The next day I had my first colonoscopy. When you’re at a [gastroenterologist’s] office, you’re not sure what’s going to happen.”
- Michelle
32
The results can take anywhere from a couple days to a few weeks, depending on the doctor, but no time is soon enough, as they are antsy for answers.
Having spent months frantically running between physicians, specialists, and even the ER, they desperately want to get to the bottom of it all so they can treat what they have and move on.
PRE-DIAGNOSIS:
ANXIOUSas they wait on results to finally solve the mystery
“The ER tech said that maybe it was from having a uterus bleed. I knew that wasn’t the case.”
- Michelle
1
33
Following the colonoscopy, the gastroenterologist refers the patient to an oncologist without giving any official diagnosis. However, the patient understand the implication of the reference, and fears that horrible news may be on the way.
PRE-DIAGNOSIS:
DREADwhen the doctor sends them to an oncologist
“The GI came into the recovery room and told me I had an obstructive tumor that needs to be surgically removed, with recovery being 4-6 weeks. He knew certainly that I had cancer. “
- Jeanne
1
Diagnosis & Treatment Conversation
Treatment Moments that Matter
“I’m married with two kids, and it was not anything we had expected. There was no family history, just rectal bleeding that went on for 3-4 months. After the colonoscopy, I woke up with them telling me I had colon cancer. It was stage 4 right off the bat. It was a very emotional time and I just shut everything out. I had very scary thoughts about if I were going to die, the fear of the unknown. It put a huge strain on my marriage, work life, and kids. It was challenging from every aspect.”
- Jeanne
Diagnosis: Patient Spotlight
36
DIAGNOSIS
NUMB AND WITHDRAWNas the doctor delivers the diagnosis
“When I was diagnosed, I felt very numb and my mind shut down. I didn’t cry very much. My daughter and my pastor were with me when this happened.”
– Tiffany
2
As they sit in the doctor’s office with their loved one awaiting the results, they have no idea what will come next. As the words “you have cancer” leave the doctor’s lips, all other words disappear and a temporary deafness takes over. Those three terrible words are all they can hear, playing over and over in their heads like a broken record. Paralyzed by shock, they disconnect and disappear into themselves.
Luckily, their loved one tunes in when they tune out, and thus begins their role as the caregiver. Not being the one diagnosed means they aren’t directly affected. So although they are deeply concerned, they remain level-headed enough to absorb the information the doctor says. They become the eyes and the ears, and what the patient might miss, the caregiver picks up.
37
DIAGNOSIS
ANGRY AND HEARTBROKENas reality sets in
2
Hoping for a case closed, this is just the beginning. But they weren’t ready for this - they have children to raise, spouses to grow old with, and an entire world to see. After the disbelief passes and the facts process, their emotions awaken to the life-shattering truth: this will change everything. Furious, they refuse to accept this as their new reality, but as it processes, their anger rapidly turns to deep despair.
“This is not what I planned. Cancer was never part of my plans. It was heartbreaking. Everything in life was going so perfect. I worked an amazing job, just finished school…and then they said I had stage 4 cancer.”
– Kathy
38
While everybody knows they have metastatic colorectal cancer, there are varying perspectives on how it affects their life expectancy.
Some believe that metastatic is a death sentence, the last step before cancer completely takes over your body and shuts you down.
Others view it as controllable; the tumors have spread to other organs in your body, but you still have the ability to shrink or maintain its size.
DIAGNOSIS
TENSION conflicting definitions of metastatic
2
“Metastatic - I had never heard that word before. I learned that this meant I was at stage 4…typically an individual with stage 4 cancer will live a maximum of two years and that’s it .” – Michael
The more realistic segments may see it more as a death sentence, knowing how serious it is.
For the illusory segments, they likely see it as controllable and maintain hope for the best.
Segment Shift:
39
DIAGNOSIS
OVERWHELMEDby the urgency of treatment and information overload
2
Following a lengthy diagnosis conversation, patients are typically scheduled for immediate surgery and/or chemotherapy within the same week or even the same day.
Only moments ago were they informed of their new existence as a cancer patient. Just when they try to take a breath and absorb the blow, the doctors throw even more new information their way, pulling their emotions in multiple directions without any time to process. Dizzied and shaken by all the sudden demands, everything is changing too fast, too soon.
“I could barely spell cancer before my diagnosis and suddenly everybody is telling me all the things I need to do because my life depends on it, and that it has metastisized to my liver and lungs.”
– Robert F
40
If the doctor predicts short life expectancy and advises the patient to “get their affairs in order”, they will end the relationship there. Presenting death as the only choice from the get-go implies a lack of determination and an inability to extend their survival.
Insulted by their complacency, they are furious, aggravated, and completely deny death. Instead, they seek out somebody who can help them construct a brighter future, a doctor with a fighting spirit who will lift them up and deliver them positive outlook and treatment options they need to make it through. Patients do not want to put their lives in the hands of someone who delivers the diagnosis as a death sentence.
DIAGNOSIS
APPALLEDby the doctor’s acceptance of their death
2
“When I heard about needing to ‘get my affairs in order’, I did not want that to happen. The doctor was too laid back for me, as if he could only get me so far. He already had in his mind that I could only make it two to two and half years, which wasn’t good enough for me. I said, ‘doctor, I beg to differ!’ I wasn’t even 50.”
– Theresa
The Withdrawn may not have the strength to switch doctors. Staying with this type of physician may lead them to become depressed.
Segment Shift:
41
DIAGNOSIS
CONFUSEDby the lack of information for long-term living
2
The conversation between the doctor and the patient focuses solely on their diagnosis and immediate next course of action. What it does not cover, however, is the disease as whole, from the progression of symptoms to treatment side effects to the scientific breakdown of what is happening. Receiving that kind of explanation from the doctor is vital to both the mental and physical well-being of the patient because it provides them with the reassurance they need to not only prevent death, but also live with it long-term.
At this point, they realize that it will be affecting their entire life trajectory, but they do not understand how. A more well-rounded education could have better prepared their transition from thriving to surviving.
“For those living with ‘chronic cancer’ there is a lifetime limit on how much chemo you could have. What are the things you can look forward to? What’s missing is a real understanding of how to live with cancer long-term.”
- Jeanne
The Withdrawn can only handle so much information at once, so it may be better for them to take their fight step by step, without too much information about the future.
Segment Shift:
42
DIAGNOSIS
PANICKEDas research reveals a bleak outlook
2
Shortly after the terminal diagnosis, Googlemania ensues. Thirsty for knowledge, the patient hysterically researches all things mCRC and realize the internet is not their friend. Massive amounts of research say they have less than five years to live, and a wave of panic washes over them as they come face to face with statistics that reads “the end is near”.
“My friend who had cancer told me not to go online and read the statistics because they are about people who are older and don’t apply to me. When I researched, my anxiety went through the roof… plus there are threads about certain medications that show very few people who have had decent results.”
- Tammi
The Withdrawn do much less research on the internet than other segments, they typically trust that their doctor will provide them with the information they need.
Segment Shift:
SurgeryTreatment Moments that Matter
Surgery: Patient Spotlight
“After the colonoscopy, I had my operation. I told the surgeon prior that I wanted everything out of me. I didn’t want this disease to consume me. So he took the right side of my liver out, 8 inches of my colon out, and part of my rectum…Since I trusted the surgeon, I thought I was going to come out clean. The surgeon said he took out 12 lymph nodes but only 3 were positive – if only one was positive you wouldn’t need chemo. That depressed me. I was looking for 100%.”
- Michael
45
DIAGNOSTIC SURGERY: aka a colonoscopy, involves examining the inside of the colon through the insertion of a long, thin tube with a video camera at the end. The doctor can perform a biopsy and remove any visible polyps. This happens before Diagnosis.
RESECTIVE SURGERY: occurs anywhere between 1st and 4th line. • Colectomy: involves removal of the cancerous portion of
the colon and nearby lymph node, and the two ends are joined back together. Sometimes, if they cannot reconnect the intestine a colostomy is performed, and they are given a stoma that comes out of their stomachs and leads to a bag where bowel movements are collected.
• Liver Resection: removes the cancerous part of the liver• Lung Resection: removes the cancerous part of the lungs
SURGERY TO RELIEVE A BOWEL OBSTRUCTION: removes the blocked section of the bowel. Most people will have a temporary or permanent stoma after this.
SURGERY
TYPES OF SURGERY3
46
Following the outcome of their results, their gastroenterologist refers them to the oncologist who can perform the resective surgery they need.
As a very targeted plan of action, patients view surgery as the light at the end of the tunnel and a potentially curative solution to their problems. For a moment their panic ceases and their spirits lift as they begin to believe everything might just be okay. They hold onto the belief that removing the tumor means removing the cancer and are thrilled at the chance to resume their normal lives. Going into surgery, the excitement level is high, and the notion is that it is all uphill from here.
PRE-SURGERY
OPTIMISTICwhen they meet with their surgical oncologist
3
“Coming up to surgery, I was looking for a cure. It looked like it was doable for me. It was one little lymph node….the surgeons I met said they do this sort of thing all the time. “
- Sue
The realistic segments may not be as optimistic before going into surgery, having a better understanding of what could happen.
Segment Shift:
47
The smooth sailing they expected has come to a screeching halt. Anticipating complete removal of cancer, they are deeply disappointed that surgeon was incapable of fixing them.
Nonetheless, they are forced to adapt and pursue another avenue of treatment. Their curative dreams are crushed.
POST-SURGERY
CRUSHEDwhen the surgery did not rid them of cancer
3
“Since I trusted the surgeon, I thought I was going to come out clean. The surgeon said he took out 12 lymph nodes but only 3 were positive – if only one was positive you wouldn’t need chemo. That depressed me. I was looking for 100%.”
– Michael
48
Typically following the procedure, patients stay in the hospital between 2-8 days, depending on how they heal. Many have complained of prolonged stays due to infections, ileus (paralysis of the intestines), incomplete healing where the lung has been removed, heart problems, or blood clots. When they return home, they commonly experience chronic fatigue, severe abdominal pain, sexual dysfunction, nausea, and fecal incontinence. It takes between 2-6 weeks before they can return back to their normal lives.
Caregivers play a critical role in the healing process, acting like an in-home nurse as they tend to the patient’s wounds and rehabilitation process. However, as the patient forms an overdependence, the caregiver’s life shifts to revolve around their loved one rather than themselves.
SURGERY
TRAUMATIZED by the recovery period
3
“I thought I was dying that night. I was not supposed to have any blood transfusions and felt very light-headed. I spent a week in the hospital recovering. The recovery was rough. I went from being an athlete to not being able to get my mail.”
-Emily
First Line
Treatment Moments that Matter
“Chemotherapy sounded so terrible with the side effects. It was really scary because you just don’t know what to expect. But the nurses were great and really baby you the first time you are there.”
- Jeanne
1st Line: Patient Spotlight
51
Since the patient is still a complete novice to medical treatments for mCRC, they put total faith into the doctor’s orders without much question. The doctor prescribes them the traditional first line of therapy and goes “by the book”, leading the treatment decision at this point as the patient follows his orders. While the doctor is seasoned in treating terminal cancer, the patient is completely without experience, so they allow the medical professional guide them in the right direction.
FIRST LINE
TRUSTING AND OPENbecause of a proven process
4
“Xeloda was the only option. My trusted doctor said ‘You are young and we have high success rates with this. You are a great candidate.’”
- Robert F
52
As they venture into unchartered territory, their pre-conceived notions of chemotherapy guide their imagination towards the worst case scenario. However, as they approach with great trepidation they also approach with great optimism, for this could be all they need to keep the cancer at bay. Fingers crossed, their hopes are high.
FIRST LINE
SCARED BUT HOPEFULas they approach chemotherapy
4
“I did a training session and they told me what the side effects were going to be. Leading up to it, I was scared, but I wanted it to start it because it was going to actively fighting the cancer.”
–Tiffany
53
The first four cycles of chemotherapy are rough. Patients experiences include flu-like symptoms, diarrhea, nausea, and fatigue. Yet, over time their bodies begin to adjust and the bad days aren’t as often as before. There is finally a calm after the storm.
FIRST LINE
RELIEVEDas reactions to chemotherapy improve with time
4
“My biggest fear was that I was going to be deathly sick after therapy…over time, I realized I wasn’t going to throw up and the drugs to counteract the side effects worked. I was very positive.”
- Karen
54
Having cancer is a full-time job. Suddenly all the once seamless facets in their life turn are layered with friction, and they are constantly forced to factor mCRC into every decision.
They lose the ability to go on vacations at their leisure at the risk of missing chemotherapy. They aren’t as productive at work as they used to be. Going out with friends puts them at risk for getting sick in public and ruining all the fun. Even simple tasks like opening a jar become too difficult. Their placement of time and energy is very sensitive. Chemotherapy takes precedence over everything in their life.
This is a period of adaptation, and it is a difficult transition.
FIRST LINE
ADJUSTING to their new normal
4
“As chemo went through my system, I started losing my sharpness. I was less aggressive with contractors in getting the best prices, and everything began slowing down for me. This was something I never had, so I needed to think on my feet.”
- Michael
55
In order to evaluate the efficacy of therapy, the oncologist conducts a scan (MRI, CAT, PET, Liver) to produce a picture of the patient’s body showing if the tumors have spread or shrunk.
The scan itself is a simple enough process, but it’s the waiting process that feels most difficult. Being told they have stage 4 colorectal cancer was traumatizing enough, so another round of bad news may be too much to handle.
FIRST LINE
NERVOUSas they await their scan results
4
“It was nerve-wrecking and pretty difficult to have the prospect [of more cancer] in my face, but I tried to turn the wipers on as best as I could”. – Sue
Second Line
Treatment Moments that Matter
“The doctor decided to do a scan every 3 months. I was in remission, but really stage 4 cancer never takes a break, it just takes a nap and comes back. Two years later I discovered it was metastatic to my lungs, so I did Folfiri. It was pretty similar to 1st line. The sessions were the same, only the drugs changed. I knew what to expect…I had done it before, tolerated it well the first time, and had no reason to fear it wouldn’t go well the second time.”
- Jeanne
2nd Line: Patient Spotlight
58
Just when they thought they had conquered the beast, their tumors expand or their side effects become unbearable.
Though disheartened, they know there are still plenty of options on the table. As they move into the new treatment recommended by their doctor, they keep their chins up and hold confidence that this one will be more effective.
SECOND LINE
DISCOURAGED BUT PERSERVERANTas their body rejects treatment
5
REASONS FOR SWITCHING MEDICATION:• Side effects are unmanageable• Cancer is resistant to treatment• Doctor decides on new therapy
“The fear took my breathe away. It felt like electricity running through my body. I couldn’t sleep I was so petrified, so I took action….I thought ‘This isn’t working, but there has to be something that will.’”
–Laura
59
Having gone through several cycles of treatment, this is no longer a foreign experience to them. They have a consistent schedule where they see the same nurses and are injected with medicine that will have predictable side effects. They look forward to the warm blankets they will receive afterwards, and have even made friends with other cancer patients they met in the waiting room.
Unlike first line, when their expectations were rooted in preconceived notions, they are now at a point of familiarity and have grown accustomed to the process.
SECOND LINE
COMFORTABLEwith IV treatments
5
“At the first treatment, you have no idea of how it is going to affect your life, but as you slowly progress through you begin to plan your life around it.”
- Jeanne
60
The public persona they once knew is deteriorating. As side effects have become more visible and consistent, they have also become more difficult to mask. Being around other people is a difficult task, and they draw inward, feeling ashamed and self-conscious.
Examples of visible side effects include hair thinning, rashes, weight loss, diarrhea, memory changes, and relentless fatigue. Some patients have a colostomy done and must carry a stoma (colostomy bag) at all times in order pass bowel movements.
Not everyone around them knows they have cancer, so they worry that not everyone will understand. This may affect their adherence to medication. The way they see themselves and the way they think they are seen has completely changed for the worse.
SECOND LINE
EMBARASSEDas cancer seeps into their personal life and alters their self-esteem
5
“The new medicine gave me acne all over my chest and face, I lost my hair, and looked like a teenager!” – Steven
61
Undergoing chemotherapy and radiation has made cancer real. At diagnosis, they were frozen in a state of shock, but no longer is having cancer a lingering phrase, it is their life.
Everything from their relationships to their schedule to the physical state of their bodies have shifted to revolve around cancer.
Coming to terms with the fact they have cancer makes it’s first mark at this point in the journey.
Note: Everyone has their own path to acceptance, but this is typical to most
SECOND LINE
ACCEPTINGthe fact that they have cancer starts here
5
“I grieved when I first was diagnosed and starting chemo. I was bummed out and angry and went through the normal grieving process. But after my first chemotherapy, I accepted it. Either you accept it and go on with your life or you live as a grumpy old fart. Acceptance has made everything easier…dying is going to happen to all of us. ”
-Steven
62
Back again for their routine check-up, they pray that all their hard work has paid off.
One diagnosis and two treatments later, they just want to restore their bodies to decent health. In these several days their minds race as they picture all the possible outcomes that may be. Unfortunately, there is nothing they can actively do to influence their results, so they are left helpless as they stress and think through the wait.
SECOND LINE
WORRIEDas they wait on test results
5
“The wait and see process…was a very nerve-wrecking period of time when I didn’t know what was wrong with me.”
- Sue
Third Line
Treatment Moments that Matter
“You do what the doctors say and think everything is going to be fine. Something shows up in the liver and it’s devastating. You go all the way back to square one again. It’s almost to the point of being clear and then it goes back again. You still don’t know how complicated the disease could be.”
– Jeff
3rd Line: Patient Spotlight
65
How could this not work? A betrayed patient points an angry finger at the doctor, who recommended these medications in the first place. He boasted their scientific backings and ease of use, and the patient trusted him. But nothing turned out according to plan, and the patient is feeling frail, emotionally and physically weaker than ever before.
THIRD LINE
HEARTBROKEN AND FRUSTRATEDthat medication has failed
6
“I felt like somebody smacked me in the face. It was hard on me, I was devastated. Words can’t really explain. I was thinking I would get rid of this; I was doing well for a year of a half and all of the sudden it spread.” - George
REASONS FOR SWITCHING MEDICATION:• Side effects are unmanageable• Cancer is resistant to treatment• Conflict with doctor
66
Having tested several methods of treatment at this point in the journey, they have developed a stronger grasp on what their body accepts and what it rejects.
Often they start with one base therapy and interchange supplemental medications, allowing them to experiment with efficacy and side effects until they have found the perfect balance that is just right for them.
With this new understanding of their bodies, they are more vocal with their doctors and demand treatments they know will best suit their individual needs.
Note: This pertains to patients still on IVs
THIRD LINE
EMPOWEREDas they understand their body’s responses
6
“You have to look at how you are responding to this, and your toxicity. It’s an art, you have to figure out what’s going to work. Combining chemo with radiation was an important step I made.” - Sue
At this point in the journey, the Withdrawn do not typically feel empowered to speak up about medications. Instead they continue to trust their doctor over their own body.
Segment Shift:
67
Going from hospital visits to self-administering medication makes all the difference in their sense of freedom. Rather than scheduling their weeks around doctor’s visits and relying on their caretaker to bring them there, they have a portable medication that is just as simple as taking a vitamin. No more travel time or waiting time to be treated – just the pill and water whenever they decide.
Now that they don’t have to block out hours of their day, they have opened up their schedules to do more of what they want to do, when they want to do it. Plus, they don’t have to put as much mental energy into thinking about cancer. With this new release, they have authority on their lives again.
THIRD LINE
LIBERATEDas they make the switch from IVs to oral therapy
6
“I was very excited – it was a good time for me mentally and physically. I went on vacation, spent a lot of my time with husband, and felt strong enough to go on a trip with my friend. I loved my doctors and nurse, but with the IV I would be anxiety ridden for two or three days going in.” - Tammi
68
Since the switch to an oral medication, they must create entirely new schedules for themselves. Gone are the days when treatment times were set in stone, when caregivers drove them to appointments and nurses injecting their medicine. Instead, they self-administer it, when they decide, posing a possible barrier to adherence. With this new freedom comes accountability and the responsibility is on them to make a comfortable routine they can stick to.
Note: This applies to patients who made the switch to oral therapy.
THIRD LINE
ADAPTIVE as they adjust to a new routine
6
“Infusions are easy, you just go to the doctor. With being on Stivarga, I sometimes forget, or I don’t take them. It’s like a form of rebellion. Cancer sucks.”
-Jeanne
69
Regardless of what they are on, failed treatments and recurrences have become a life motif, and the likelihood that this could happen again is not so far off base. This is the biggest fear of their lives and it follows them everywhere they go. God forbid the lump in their neck, pain in their back, or stomach ache means the cancer has returned. They are arrested by the possibility of the disease getting worse at any second.
THIRD LINE
WALKING ON EGGSHELLSas every ache triggers fear of cancer
6
“Having cancer, you will always live this way, so when you have pain you start panicking. Every little lump or bump will always be cancer to me, even if that’s not what it is.”
– Emily
The realistic segments are more matter of fact at this stage, and know that their cancer is likely growing.
Segment Shift:
70
It’s back again to the waiting game, but this time their fear of tumor growth is many months in the making. As they wait on the results, they hold their breath, frozen in fear as they are captured by cancer-phobia. If the results return bad news, it means more pain, and less life.
THIRD LINE
TERRIFIEDas they wait on scan results
6
“There is always the fear that it will be the worst possible scenario. I call it scanxiety.”
-Jeff
Fourth Line +
Treatment Moments that Matter
“Psychologically speaking, I thought I was going to beat it. Now I have to try something else and take the crap of not knowing if it is going to work. It put me in another frame of mind, and for my wife, being my caregiver, it is almost like her having the cancer. Stivarga shrunk the tumor but the side effects were too much. I had open wound blisters on my feet and have to use a wheelchair because I can’t walk. I cried bitterly. There are times I have thought to myself, “is it really worth it?” But I don’t want to stop treatment. The only obstacle would be if the treatment doesn’t work anymore… I still have a soul, I still have a heart, and I still have a love for my life. I’ll be damned if I give up because a doctor says to me that they can’t treat me anymore…You have to be your own advocate.”
- Michael
4th Line: Patient Spotlight
73
Despite all the adversity they have faced, it just isn’t getting better. They have gone through surgery, radiation, three different medications, and financial and emotional hardship only to be told they are still riddled with disease. Aggravated, they feel as if their suffering hasn’t amounted to any progress and will have to endure a new set of side effects once more.
FOURTH LINE
FRUSTRATEDwith unrelenting side effects and/or ineffective therapy
7
REASONS FOR SWITCHING MEDICATION:• Side effects are unmanageable• Cancer is resistant to treatment• Conflict with doctor• Understanding their body’s responses to therapy
“I still have a soul, I still have a heart, and I still have a love for my life. I’ll be damned if I give up because [a doctor] says to me that they can’t treat me anymore.”
- Michael
74
Across the board, patients begrudgingly declared that chemotherapy is poison. Intended to shrink their tumors, though sometimes with avail, the side effects are so debilitating they can barely function. Living a normal life is becoming frustratingly impossible, and it is as if the chemotherapy is harming them more than the cancer.
For instance, patients are so overcome with fatigue they could hardly stay awake. Some were bound to wheelchairs due to skin peeling caused by hand-foot syndrome. Others couldn’t even push elevator buttons or hold a pen because of the neuropathy.
The life they loved to live has been erased by the chemotherapy, and their entire existence revolves around managing side effects and adhering to a schedule.
FOURTH LINE
BITTERas toxicity builds
7
“I had enough. I was underweight. The only thing the doctor did was lower the dosage strength of the chemo. He would agree with what I said but never confirm that he was going to change it. I was so sick and felt like, in my bones, I was going to die, not from the cancer but from the side effects of the chemotherapy. It is poison.”
– Fran
75
When the going gets tough and they struggle to carry on, they ground themselves in a higher purpose. Some lean on their faith in God to carry them through, holding strong to the belief that He has a plan and will be with them in Heaven. Others are motivated by the people they love the most – if they leave this Earth, it may be too difficult for their families to go on without them. Some even say this was given to them as a necessary challenge towards growth as human beings. No matter the reason, their incredible resilience is driven by the belief that this fight is bigger than themselves.
FOURTH LINE
MOTIVATEDby a strong sense of purpose to keep the fight alive
2
“I will go onto a better place, but my wife is the one who will be left behind…I am doing everything I possibly can in my power to make sure I don’t leave her. She is such a motivating factor. ”
– Jeff
The Independents may be less motivated here to keep fighting with medication, and may instead make the choice to fight with other means, and opt for better QoL.
Segment Shift:
76
The entire mCRC journey has been a learning and growing process for them. Conflicting messages from doctors, loved ones, and statistics have been pulling them in opposite directions, influencing their treatment decisions and life perspective.
However, they are no longer novices to this game. Initially, they were insecure and in need of more guidance, but now they realize the doctors’ recommendations and predictions are not necessarily true for them. One size does not fit all. They refuse to be a statistic; their lives are important. With this heightened sense of self-worth, they speak up for themselves and challenge the doctor’s advice. They are the navigators of their journey.
FOURTH LINE
ASSERTIVEas they strengthen their voice and define their experience
2
“You have to ask questions…If you aren’t interested in your own health, you are going down the wrong road. You have to know for yourself what you’re doing, what you’re chances are, and if you don’t like it, fire the doctor and get another one. Nobody owns my body but God”
– Michael
The Followers are less likely to take their treatment into their own hands, but may switch doctors if they feel that theirs is willing to give up the fight.
The Withdrawn are less likely to challenge what their doctor says, and may still maintain some degree of insecurity.
Segment Shift:
77
Despite the morbid statistics and cynical doctors who told them their lives should be over by now, they are still breathing. All the messages they received up through this point says the cancer should have killed them by now. Living past their life expectancy has given them strength and validated the belief that they can make it past anything.
FOURTH LINE
GRATEFULthey have made it this far
7
“In some respects, I am very fortunate that I have survived this long. The mortality rate is very high. It is not so much a challenge, but a blessing. Everyday is another day. Every year is another year. It depends on how you look at it. I’ve survived 15 years.”
– Steven
78
Despite all the trials and tribulations, their goals have stayed the same: find a cure to this disease or go into remission.
After all, they have lived past their predicted life expectancy and made it through four lines of therapy, proving to themselves that they have the resilience it takes to defy all odds. They keep their eyes peeled for the possibility of an existing cure, and settle for no less.
FOURTH LINE
STILL DETERMINEDto find the silver bullet
7
“There’s one conclusion that is satisfactory, which is complete remission, otherwise or you are circling back into a research mode for different potentials. There are no appropriate answers besides remission or cure.”
- Robert F
The realistic segments’ goals revolve more around maintenance and finding more time, knowing that a cure is not out there.
Segment Shift:
79
Since their bodies have rejected everything so far, new science could mean promising results. Clinical trials not only advance their chances of success, but also advance science and the well-being of others in the process, giving them the extra satisfaction of using their struggles for a greater good. However, they will only consider up and coming therapies backed by evidence that show improvement and have minimal side effects. When they do find this, it tells them that maybe life isn’t over after all.
FOURTH LINE
PERSERVERANTas clinical trials and new treatments provide a glimmer of hope
7
“Every time I sign up for a clinical trial, I trust that it might be the next successful thing…I hope I am taking an experimental drug that is the next best thing for the FDA to push through.”
- Michelle
80
Patients are at the end of their line. They can only handle so much heartbreak and failure before they fall apart. With every failed scan result, the likelihood of death becomes more real in their minds. Medically speaking, they have tried almost everything. Their well-being and the well-being of their family are at stake. The outcome of these results mark a pivotal moment in their future.
FOURTH LINE
PETRIFIEDas they wait for results to come back
7
“I don’t care who you are, with every little thing that comes up, you will always have, with colorectal or any other cancer diagnosis, a fear that it is coming back. Your brain never lets you see no evidence of disease.”
– Fran B
The illusory segments will likely continue to fight and exhaust all options in the hope that something will work or give them more time.
Segment Shift:
Ending TreatmentTreatment Moments that Matter
82
ENDING TREATMENT
VARYING EMOTIONSexperienced when making the decision to end treatment
SAD & DEPRESSEDby the lack of treatment options
HELPLESS because they’ve lost power life
FEELING INVISIBLEwhen unheard by the oncologist
DEMORALIZEDwhen treated as a number, not a human
FEARING THE FUTUREwithout information on long-term living
RELIEVED by the support of family & friends
FEELING GUILTYfor putting their family through the ringer
RESENTFUL & DEFEATEDabout living with unbearable side effects
ENDING TREATMENT
SAD & DEPRESSEDby the lack of treatment options
Many patients will continue to fight for as long as treatment options are readily available. Unfortunately, there are not unlimited options and patients too often find themselves forced to make the decision to end active treatment even when they are mentally and emotionally wanting to continue. While this lack of treatment options may not be an adherence issue on the patient’s part, they’re still left feeling completely depressed and betrayed by their body – sometimes even blaming themselves for their body’s inability to work well with the chemotherapy options supplied by their doctors.
“It is quite a burden. You want (to be cured) so bad that you feel helpless about it. At a certain point you look back and say you’ve done everything you could. It’s hard to not lose faith in the system.”
-Robert F.
83
Relevant Segments:
ENDING TREATMENT
HELPLESS because they’ve lost power over life
Maintaining a sense of control over their lives is critical for patients living with mCRC, particularly since they no longer have power over their bodies. As individuals progress through their mCRC journey, they feel like they’ve slowly lost authority and seek out ways to take back the power in their lives. Many patients feel that the decision to end active treatment gives them back this sense of power. They often associate the decision more with making the choice to live and live on their own terms, versus die and die under cancer’s control.
84
“I will not let this be a death sentence. I will die on my own terms.”-Robert F
Relevant Segments:
ENDING TREATMENT
FEELING INVISIBLEwhen unheard by the oncologist
A patient’s relationship with their oncologist plays an extremely important role in the success of their long-term adherence. Many patients expressed frustration and lack of confidence in their doctors – either giving up on them way too early and/or missing the drive to research alternative options. Patients will often jump around from doctor to doctor in hopes of eventually finding a good fit, all the while unable to develop a lasting relationship grounding in trust and equality. This inability to find a stable medical partner means patients’ routine and compliance suffer. If they don’t believe in their doctor they are less likely to believe in their recommended treatment plan.
85
“Our tiffs came from his push for chemo and alternatives weren’t his proclivity. I asked about the side effects, if they were going to be worse and he kept saying he wasn’t sure. In my mind, if he surgically removed the cancer and the only things showing up were in my nose and lung, why was he forcing poison into my body? I was finally starting to feel better. He was doing exactly what science told him to do, but to me, science isn’t always the best option for every patient.”
- Fran
Relevant Segments:
ENDING TREATMENT
DEMORALIZEDwhen treated as a number, not a human
Too often along their mCRC journey patients experience the ‘cattle drive’ syndrome. From the way they engage with doctors to how treatment processes and plans are put into place, patients are left feeling like they’re treated more as a statistic, than a human being with individualized needs. In their eyes, their mCRC experience is a personal one so therefore they require a plan of action (goal setting, treatment dosing, information gathering, etc.) that is as unique and particular as they are themselves. This notion of ‘group protocol’ can often lead patients to distrust in the healthcare system and disconnect for their treatment in an act of rebellion.
“Many cancer patients just do what the doctor says. I refuse to be cattled.” – Fran
86
Relevant Segments:
ENDING TREATMENT
FEARING THE FUTUREwithout information on long-term living
While physicians often refer to mCRC as a chronic condition, this information is rarely relayed to the patients themselves. Conversations are often focused on the here and now with little emphasis on next steps or more importantly, long-term living. This ‘today’ tactic may work for some, but for most can create a sense of fear – not knowing what to expect or how to react. It also may generate a more immediate will to fight, but does a disservice to patients in the long run when their cancer becomes a more chronic battle. It’s more difficult for them to maintain a strong will later on in the journey without a marathon-type outlook engrained in them from even the initial point of diagnosis.
87
“Being a survivor at stage 4 and being told you have a year, I hated that. There wasn’t much discussion on what you do after, how you handle the side effects, what is your new normal is and how you prepare yourself for that. You’re not expected to survive.”
- Fran
Relevant Segments:
ENDING TREATMENT
RELIEVED by the support of family & friends
As patients progress through lines of therapy, the support of those around them begins to wield more influence over their treatment decisions. Regardless of whether or not patients themselves want to stop or continue on with treatment, the urgings of their family, friends, and even physicians can sway them toward one decision over another. If a patient’s family is telling them to stop treatment, it’s likely that they will listen and for many, even feel relieved.
“I had a family meeting with my three children. They said, ‘Mom, we rather you have a full, short life than a long, hard life.’ so that is what we decided…I watched my dad die of cancer and suffer for a year… I don’t want my family to watch that. My children are my world.”
- Kathy
88
Relevant Segments:
ENDING TREATMENT
FEELING GUILTYfor putting their family through the ringer
Patients’ decision to end treatment can also be heavily influenced by the guilt they experience from involving their family in all the physical, emotional, logistical, and financial burdens associated with the mCRC journey. Patients often express the want to end treatment purely based on it being beneficial to the ones they love. They no longer want to put their family through the ringer and from a personal standpoint, no longer want to feel the responsibility of knowing that it’s all due to them and their ongoing complications and frustrations.
“As the cancer adapts to treatment, and as your body can no longer take chemo, you begin to lose options. But I’m not going to put my family in debt for a clinical trial that may not help me. I must shelter my children from a lot of decisions.”
-Tim
89
Relevant Segments:
ENDING TREATMENT
RESENTFUL & DEFEATEDabout living with unbearable side effects
The physical toll that patients experience while undergoing chemotherapy can be unbearable. As patients progress through the mCRC journey, it becomes more and more difficult for them to focus on the positive benefits of the treatment, and rather begin to fixate on the negative side effects. Once patients realize that their days are numbered, quality of daily life triumphs quantity of days. Even for those that experience only a few bad days of side effects at the beginning of each round of chemo, it’s difficult for them to see through to the other side.
90
“Chemotherapy has been extremely difficult. If anything, it has extended life three to four months, yet my quality of life has been deteriorating greatly. Side effects play a huge part, but it’s not just that. You get tired of the whole state of mind. Where is the future in that? Is it going to change or get better? No. I’ll have a better quality of life without it.”
- Tammi
Relevant Segments:
Best Supportive Care
Treatment Moments that Matter
“My teenagers came home when I was laying on the couch and thought I was dead. They said ‘Mom, don’t do this.’ So I had a family meeting with my three children and they said ‘Mom, we rather you have a full, short life, then a long, hard life. So that is what we decided. It was the hardest decision of my life…but I was not living…this is difficult for people to process. As somebody who hasn’t gone through treatment and doesn’t know how I react to chemotherapy or how I feel, they can’t really comprehend. ”
– Kathy
Best Supportive Care: Patient Spotlight
93
Their entire journey has been an experience of loss: hair loss, weight loss, memory loss, financial loss, loss of time, loss of freedom, and loss of happiness. The decision to go off treatment is about regaining these losses and restoring their livelihood. No longer will they just be going through the motions. No longer will they have to endure the tribulations of chemo.
After serious thought, they have made the conscious decision to sacrifice a longer life in exchange for a better life. To them, time is most valuable when they can enjoy it. The trade-off is worth the price. They have made up their minds.
BEST SUPPORTIVE CARE
DECISIVEas they cut their losses
8
“I was not living. It is very much quality over quantity. I rather live six full months and truly live life then six terrible years. People disagree with my decision but is something I have to do my way. People say I am choosing to die, and I say no, I am choosing to live.”
– Kathy
For the illusory segments, it is more likely that they ran out of viable options to treat their mCRC, than choosing to stop
Segment Shift:
94
Everything up through this point in their journey has shaped them to be extremely time conscious. With a shortened period of time left, the little moments matter: doing homework with their children, feeling the warmth of sunshine on their face, watching a movie with their spouse. With death so near, they live in the moment, appreciating every little thing, because there is no
promise for tomorrow.
BEST SUPPORTIVE CARE
MINDFULthat there is no promise for tomorrow, so they live day by day
8
“It’s a blessing to have this time…I am focused on making good memories with my kids. Telling them I love them, taking more family pictures, making a bucket list, teaching them how to cook.”
- Kathy
95
Conventional medicine may be off the map at this point, but holistic therapy is completely within reach.
Part of their newly found time and energy is spent discovering alternative, non-toxic treatments that focus on treating the physical, mental, spiritual, and emotional elements interconnected to their health. This can range from radical diet changes to acupuncture to botanical supplements to stress management.
Since chemotherapy was ineffective, patients explore more natural ways to restore their health.
BEST SUPPORTIVE CARE
EXPERIMENTALin choosing holistic options
8
“I put myself in the driver’s seat and took a serious look at immunology; I went to Germany for 4 months to look at [these kind of] options.”
– Robert F
96
Although they have made the decision to stop treatment, they are not opposed to innovative alternatives that may heal their cancer, as long as it does not compromise their well-being. After all, they chose to end treatment so they could enjoy life. So if they came across medication that would allow them to enjoy their lives even more than now, for even longer than they hoped, they may take it into serious consideration.
BEST SUPPORTIVE CARE
OPEN-MINDEDas they keep their eyes peeled for new breakthroughs
8
“I get up at 6am every morning, get dressed, turn on the computer and Google colon cancer articles every morning. I am looking for a more centered attack at cancer. There’s a flash of new drugs. You just hope you live long enough to get the silver bullet, the one that cures you.”
– Robert W.
The Withdrawn typically do not engage in as much information searching, and are therefore not on the lookout for something new unless their doctor tells them about it.
Segment Shift:
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Having resigned from chemotherapy, they acknowledge their death is just around the corner. However, when they leave this Earth their loved ones will remain, coping with the uncertainty of how to carry on without them.
But as part of preparing for death is also preparing others for life, they have taken the necessary steps to set up their families for success after they die. This includes anything from writing a will to paying off the mortgage to teaching their children how to cook. Comfort is found in knowing that the family they leave behind will have something to take with them, making the end easier to accept.
BEST SUPPORTIVE CARE:
ACCEPTANCEof the inevitable, as they’ve equipped their families for a life without them
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“I’ve made a whole folder of benefits that my wife will get when I pass. This has really become more about my family- life insurance, new cars for my wife and son, new furniture, decisions about our home . You get to that point of making sure the family will be secure after you’re gone.”
- Tim
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LunchYum!
!
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V
Now What: IdeationExploring key moments in the emotional journey
Ideation Introduction
Over the course of this journey we have identified a series of adherence complications and barriers,
spanning from daily living to long-term compliance. Based off these findings, we have
pinpointed opportunities to ideate from that will keep our patients on track.
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Adherence Barriers + Innovation Opportunities
Barrier: Lack of OptionsOpportunity: Education
Barrier: Doctor ConflictOpportunity: OptimizeCommunication
Barrier: Number, Not PersonOpportunity: Personalization
Barrier: Fear of FutureOpportunity: Marathon Not Sprint
Barrier: Family Supports StoppingOpportunity: Provide Family Hope
Barrier: Causing Family HardshipOpportunity: Generate Balance
Barrier: Intolerable Side EffectsOpportunity: Track and Predict
Barrier: Loss of AuthorityOpportunity: Empowerment
Barrier: Lack of RoutineOpportunity: Create Mindless Habits
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Adherence BarrierLACK OF OPTIONS. Patients find themselves at a standstill when they no longer see treatment options on the table. Though they may still want to continue on, they give up when it seems like nothing is left.
Innovation OpportunityEDUCATION. Educate the patient on new treatment so that if the doctors don’t provide this information, the patient themselves can access it. Provide a thorough breakdown of medications they can take now or in the near future, especially ones they may have never considered before. This will let them know they are never stuck; there are always ways to keep going.
Relevant Segments:
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Adherence Barrier
LOSS OF AUTHORITY: As the patient progresses through their journey, they feel like they’ve slowly lost authority and seek out ways to take back the power in their lives. Many patients feel that the decision to end active treatment gives them back this sense of power.
Innovation OpportunityEMPOWERMENT: Develop ways to help them regain power over their everyday lives, from the big moments to the little things. Giving them the freedom to make decisions over even minute details can make a huge difference in relieving their frustration and putting them back in the driver’s seat.
Relevant Segments:
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Adherence Barrier
DOCTOR CONFLICT: Their doctors aren’t providing them the kind of care they feel like they deserve. Conflicting opinions on next steps of treatment lead to a lack of trust, resulting in a lack of compliance.
Innovation Opportunity
OPTIMIZE COMMUNICATION: Develop programs and materials that enable stronger doctor/patient relationships and improve communication. Connect them to doctors that suit their preferences and needs.
Relevant Segments:
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Adherence Barrier
NUMBER NOT PERSON: The patient is treated like a statistic, rather than a person with individual needs.
Innovation OpportunityPERSONALIZATION: Provide them with treatment and support that is tailored to their personal experience, acknowledging them as a human being who needs specialized care. One size does not fit all.
Relevant Segments:
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Adherence Barrier
FEAR OF THE FUTURE: There is plenty of conversation on how to deal with fighting cancer right now, but nothing about how to live with it forever.
Innovation OpportunityMARATHON NOT SPRINT: Create resources that eliminate fear of the future and lend insights on how to deal with everyday life as a cancer patient. Restructure the conversation so it is framed as a marathon, not a sprint.
Relevant Segments:
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Adherence Barrier
FAMILY SUPPORTS STOPPING: Their families, one of the main drivers for continuing the fight, give them the okay to let go of treatment.
Innovation OpportunityPROVIDE FAMILY HOPE: Deliver hope and support for families so they have the tools and emotional means they need to carry on as caregivers. Empowered families equal empowered patients.
Relevant Segments:
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Adherence Barrier
CAUSING FAMILY HARDSHIP: The patient feels like a burden to their families as their loved ones sacrifice money, time, and energy to keep them alive.
Innovation OpportunityGENERATE BALANCE: Provide outlets, support systems, and tools for family members to generate balance in their lives so that they don’t feel over-impacted. Having these resources will relieve the guilt the patient carries and lessen everyone’s hardship.
Relevant Segments:
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Adherence Barrier
INTOLERABLE SIDE EFFECTS: The patient is fed up and exhausted by side effects that never go away.
Innovation OpportunityTRACK AND PREDICT: Provide a snapshot for the patient to track and predict side effects. We’ve heard that side effects are worse in the beginning then they are towards the end, demonstrating what to expect will help them see the light at the end of the tunnel.
Relevant Segments:
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Adherence BarrierLACK OF ROUTINE: Switching from an IV to an oral means a change in their routine and has a completely new set of implications. With an IV, they could compartmentalize cancer, whereas orals stay with them as a constant reminder. Orals are also self-administered, so they must rely on themselves to take it.
Innovation OpportunityCREATE MINDLESS HABITS: Create a new structure so that taking orals becomes a mindless habit, freeing up their mental energy and preventing further stress or exhaustion.
Relevant Segments:
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NOW WHAT: Patient Role Play
The Self-Advocate The Independent The Follower The Withdrawn
The Caregiver
