by Carolyn Thomas ♥ @HeartSisters
“There may be times when the joy you feel about survival far outweighs any anxieties you may have.
“Then, there will be times when your fears and uncertainties seem to take over your life, and you wonder if you will ever feel normal again.”
This sounds so familiar to any of us who have survived a catastrophic cardiac event, doesn’t it?
But these words were not written about heart patients – they’re for cancer survivors. Which made me wonder about this thing known as “survivorship” – a popular concept in oncology that defines a cancer survivor “from the time of diagnosis and for the balance of life.”
But where, I ask you, is the concept of “survivorship” for heart patients and their families? And why haven’t I found it yet?
This widely accepted term is largely credited to an organization called the National Coalition for Cancer Survivorship. Their award-winning Cancer Survival Toolbox® is a free, self-learning audio program “to help people develop important skills to better meet and understand the challenges of their illness.”
For example, the toolbox contains audio podcasts with topics like:
“Understand that you are an individual, NOT a statistic!”
Sounds great! But where’s our Heart Disease Survival Toolbox for heart patients?
Did you know that there are many books devoted to the subject of cancer survivorship? Books like Everyone’s Guide to Cancer Survivorship, or Cancer Survivorship: Today and Tomorrow, or Handbook of Cancer Survivorship, or Implementing Cancer Survivorship Care Planning.
Did you know that there are survivorship centres, like the Ottawa Regional Cancer Foundation’s Maplesoft Centre? It’s a lovely building which “incorporates the five Wu Xing elements of fire, earth, metal, water and wood – to help provide balance and harmony to the lives of cancer survivors and family members.”
Did you know that there are even cancer survivor parks? The R.A. Bloch Cancer Foundation, for example, has provided millions of dollars to build 25 of these cancer survivor parks across the United States and Canada, each featuring therapeutic elements like “positive mental attitude walks” amid beautiful urban settings.
Again, where are the podcasts and guidebooks and patient centres and therapeutic parks and healing gardens developed specifically to enhance our experiences as heart patients?
It’s damned hard enough to get cardiologists to refer their eligible heart patients to cardiac rehabilitation programs – despite knowing that physician referral is the most important predictor of completion of such lifesaving programs. The referral stats are appalling. Studies suggest that, despite substantial evidence that cardiac rehab improves both longterm survival and quality of life, fewer than 20% of all eligible heart patients are actually referred to rehab programs by their cardiologists. What kind of “survivorship” are these cardiologists planning for their heart patients? See also: Failure to Refer: Why Are Doctors Ignoring Cardiac Rehab?
In 1985, The New England Journal of Medicine published Dr. Fitzhugh Mullan‘s account of his own diagnosis and treatment of cancer. In that article, Dr. Mullan defined three primary seasons of cancer survivorship, which he termed:
- acute survivorship
- extended survivorship
- permanent survivorship
Then in July 2010, Dr. Kenneth Miller wrote a column for Medscape Education Oncology called Symptom Management and the Seasons of Cancer Survivorship, in which he proposed a revised model for these “seasons” of survivorship.
Within this framework, he wrote, various symptoms may appear, disappear, and then reappear over time.
Hmmmm . . . just like heart disease symptoms frequently behave.
So while we’re waiting for the field of cardiology to come up with a revised model for the seasons of survivorship for us (what the heck, any kind of model at all, revised or not!) let’s consider some of the highlights of Dr. Miller’s proposed list. Just try substituting the words heart disease for cancer:
♥ Acute Survivorship
“The stage of acute survivorship begins at the moment of diagnosis and extends through treatment. Common symptoms affecting survivors in this stage often include nausea and pain as well as anxiety and depression.♥ Transitional Survivorship
“Once the initial phase of diagnosis and treatment has ended, the stage of transitional survivorship begins – a transition back to “normal” or a “new normal.” This is the stage in which the medical team is less involved, and relief and celebration by the survivor might be mixed with, or supplanted by, feelings of isolation and depression.♥ Extended Survivorship
“A large number of cancer survivors who are disease-free following treatment and who are living with varying risks for recurrence find themselves in this stage. Extended survivorship represents a period when the risk for disease recurrence may be diminishing, although a survivor’s anxiety level about the risk can either be directly proportional to the objective risk or, ironically, inversely proportional to it.♥ Chronic Survivorship
“There is a growing number of cancer survivors who are “living with cancer” as a chronic disease and are in the stage of chronic survivorship. For chronic survivors, day-to-day life may have many normal aspects, but the fear of recurrence or disease progression is often an ever-present concern.♥ Permanent Survivorship
“The survivors in the permanent season of cancer survivorship are a heterogeneous group. Some are cancer-free and free of cancer while others are cancer-free but not free of cancer – either physically or emotionally. Finally, some remain in this stage, but re-enter the stage of acute survivorship because of a secondary cancer caused by therapy for the original cancer, while others may develop a second, unrelated cancer.“Permanent survivors who are cancer-free and free of cancer look at cancer as part of their past medical history, and have little or no late or long-term medical, emotional, or other sequelae of the experience.
“By contrast, some permanent survivors are cancer-free but not free of cancer – they are left with medical, emotional, financial or spiritual “fallout” from the experience. Medically, they might have any of a wide range of problems as well as physical changes and functional limitations as a result of surgery. Emotional issues in these survivors can range from mild anxiety to long-term depression or Post-Traumatic Stress Disorder.”
I felt equal parts inspired and dismayed while reading Dr. Miller’s holistic overview of the cancer patient’s journey:
- inspired because of the profound value to cancer patients in being heard and seen in such a humane fashion, far more than being merely today’s 10 o’clock clinical procedure
- dismayed because I’ve been seeking a model exactly like this that mirrors my own journey as a heart attack survivor – yet didn’t even realize I was seeking it until I read about cancer survivorship
In other words, why do they have what we don’t? And what can we do about it?
Heart disease remains a chronic and progressive diagnosis. Our hardworking docs can patch us up, stent us, bypass us, zap our wonky electrical circuits, implant lifesaving devices in our hearts, order our prescription drugs, pat us on the heads and discharge us home from CCU – but what they cannot do is fix what caused our cardiac events in the first place (often decades earlier). See also: Heart disease: decades in the making
We know that one of the most significant risk factors for having a heart attack is having already had one. Among patients who survive their first heart attack, 21% of men and 33% of women will experience another one (and that stat, by the way, may jump 1.5 times higher if you don’t make permanent wholesale lifestyle changes).
None of us living with heart disease has a “five-year survival anniversary” date circled on a future calendar that we can then meaningfully celebrate.
And surprisingly, we heart patients make up barely 2% of all diagnoses discussed online by patients on social media, slumped down in the second smallest diagnostic category (we beat out Alzheimer’s patients) according to research from the Minneapolis-based marketing firm Russell Herder.
You might wonder how that is even possible – given that, compared to every other disease included in the study’s findings, heart disease is one of our biggest killers.
This study called Seeking Social Solace identified trends in how patients with serious medical conditions are using social media platforms. Turns out – heart patients are not!
So I’ve been limping along here, reading and writing and trying to make sense of the vagaries of what I simply know as “living with heart disease”.
The closest I’ve come is to happen upon the work of cardiac psychologist Dr. Wayne Sotile and his useful book, Thriving With Heart Disease.
For us living with heart disease, there are:
- no cardiac survivorship centres
- no heart disease survivor parks
- no survivorship coronary care plan textbooks for our physicians
And then somehow, amazingly, one day four years after my own life-altering heart attack, I stumble upon this “seasons of survivorship” model, born of cancer patients – but a well-accepted clinical model that seems to exquisitely capture the lived experience of those who have survived a cardiac event as well (and likely many other life-limiting medical conditions).
Again, I’m compelled to ask: isn’t it about time that heart disease deserves to be viewed within the same professional framework that informs the world of cancer survivorship?
© 2012 Carolyn Thomas www.myheartsisters.org
NOTE FROM CAROLYN: I wrote much more about issues like this in my book, “A Woman’s Guide to Living with Heart Disease” (Johns Hopkins University Press)
;
Q: Are you aware of any models of cardiac care that mimic the cancer survivorship model?
See also:
The New Country Called Heart Disease
How We Adapt After a Heart Attack May Depend on What We Believe This Diagnosis Means
Surviving The Crisis: The First Stage of Heart Attack Recovery
Creating a Coping Strategy: The Second Stage of Heart Attack Recovery
Handling the Homecoming Blues: The Third Stage of Heart Attack Recovery
Learning to Live With Heart Disease: The Fourth Stage of Heart Attack Recovery
Discover. Join. Leave. The Life Cycle of Online Patient Groups*
Online Patient Groups: Why So Under-Used?*
What Really Goes On in Your Friendly Online Patient Group*
* a 3-part series about online patient support communities
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Heart Sisters 
Hi Carolyn,
The survivorship cancer model, especially in breast cancer, has intense roots in marketing.
Stories of suffering, limitations of screening and treatments, environmental issues of breast cancer, untreatable cancers and treatment access issues have no home in conventional breast cancer culture. Instead, the focus is on celebrating, buying stuff, simplistic health promotion, etc. Plus, more importantly, cancer culture puts total onus on individuals for their own well-being and doesn’t really hold society accountable for anything. That would hurt the bottom line.
So I don’t really see the survivorship model as a positive thing — I mean, I think it can be and probably has in some areas, but I haven’t seen it.
It’s interesting that cancer has a survivorship model, but heart disease doesn’t. In any case, I am sorry you and other heart patients have not had that kind of support, among other support issues.
Ashley
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So many really sound points, Ashley. Breast cancer’s been largely co-opted by corporate pinkification of the cause. Many of us are aware of a growing backlash against this – particularly among the BC mets community which correctly assesses its lack of appropriate representation at those happy-happy pink-balloon festivities and awareness fundraisers. And yet these survivorship supports still struck me immediately as being so potentially valuable for anybody experiencing a catastrophic life-altering health crisis no matter what the diagnosis – it’s why I again ask: “WHERE is the survivorship model for those living with heart disease?”
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Much of what you raise is very recent and too much is patron or celebrity-driven.
I’m a long-term survivor of a very rare cancer. There was nothing for me and there still isn’t. l live with and around long-term physical effects every minute of every day and my treatments have caused (are causing) still other conditions. Major muscles were surgically removed and I never had a minute of physical therapy to help me learn to function, so I just did the best I could. Emotional effects? I do my best. Back then I was advised to tell no one, and especially never to tell potential employers, which was good advice, absent political pressure to the contrary, though it also meant zero accommodation and years of criticism and raised eyebrows at my many health problems.
Both sides of my family are thick with heart disease history, including 2 brothers with major cardiac procedures and a father who died with congestive heart failure. While level of insurance support varied in those 3 cases, they were pretty much on their own, and one really stuck with rehab and the other two didn’t.
It seems that we’re talking about overall lack of support in the system we live in, having to fight and organize ourselves, at least until there’s a certain critical mass politically, enough to push policy. Insurance companies in the US are about profit, and they make more profit to the extent they do NOT cover tests, procedures, counseling, support. At this time, the direction of government is to support reduction in what insurance covers, not increase it. Keeps coming back to: We need health care and support, not insurance.
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Hello Kathleen,
What a story! Even in cancer care, great strides have been made over the years compared to the dismal reality when you were first diagnosed. Few cancer patients now, for example, would likely be advised (by a doctor? really?) “to tell no one” about your diagnosis. And now, Cancer Survivor Programs are covered under Medicare and Medicaid as part of routine surveillance after a cancer diagnosis; most other insurance plans cover these types of visits – compared to cardiac rehab programs which most of us have to pay cash for.
Interestingly, one Cancer Survivor Program I found explains one important benefit of survivorship care plans: “There are late and long-term effects from the cancer treatment, some of which can be related to the dose received, which may not show up until years after the treatment is done. Your health care team will use this information to tailor a follow-up plan just for you.”
Sounds like you missed that part of the program! Thanks for sharing your thoughts with us here. Take care…
C
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You’re so right about the importance of follow-up support and surveillance, Carolyn. Of course cardiac patients need and should have all that as well. We all deserve a health care system that is really about health.
My point is that it’s not rosy for cancer survivors either. It took decades of organization and fight to get any support for cancer patients, long or short term, well after my occurrence, and even now it’s spectacularly uneven. My HMO offers nothing of the kind to members who have had cancer, and I speak regularly with a leader of their cancer support group.
With the help of resources like yours, some of us on the ground cobble together what we can.
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Patients should not be responsible for “cobbling together” resources to get the help they need, and resources should NOT be “spectacularly uneven”!
This feels like third world health care we’re talking about, doesn’t it? At least your HMO does have a cancer support group (few have cardiac support groups outside of cardiac rehab programs, and even within those that do offer rehab, fewer still offer psychosocial support as well as physical exercise).
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I agree 100% with your outrage, but that’s how the health care business is going, especially in the US, and this HMO was frequently cited as a model during the Obama health care insurance debates. It’s my understanding that when this particular professional retires, his position will be closed.
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PS. Point of clarification: I’m not a member of my HMO’s cancer support group. Not eligible – I asked. It’s only for people who are undergoing treatment at that very moment.
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I think that cancer is viewed by the medical community (and the media) as a really unfortunate occurrence, which generates a great deal of sympathy for the stricken and their families. On the other hand, cardiac disease tends to be viewed as a lifestyle disease; if you have cardiac disease, you must not be exercising or eating a healthy diet, no matter the actual cause of your disease.
Plus, there is the fact that men get preferential treatment when it comes to any disease, particularly cardiac; care for women, especially those with cardiac disease, tends to be secondary. Also, men are more likely to die after an acute cardiac event, while women are more likely to end up w/ long-term (chronic) heart disease. (Study done in the 1990s, need to find the actual source).
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Hello Alicia – I agree. Heart disease is widely considered to be self-inflicted, compared to cancer which (except for certain forms like lung cancer in smokers) strikes the innocent out of the blue. I wonder if the male death rate study you’re referring to is one that focuses on sudden cardiac arrest (75% of SCA patients are men, with dismal 5% out-of-hospital survival rates)?
Thx –
C
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wow that is so alarming to see.
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Timely and so necessary, as usual, Carolyn! Thanks for posting this.
I am glad to see the comment (below) that there are some Cardiac rehab’s that address “survivorship” but unfortunately I don’t think it is common, or enough time is left in class for open discussion.
Just one of the reasons many of us have started support groups! BTW: just yesterday, I spoke to a reporter from EveryDay Health to discuss the prevalence of PTSD (Post Traumatic Stress Disorder) after a heart attack (1 in 8). I’ll let you know if they use my story or not, as it directly relates to the “Chronic Survivorship.”
Cheers to you,
Steph Hammar
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Hi Steph – your observation about most cardiac rehab being exercised-focused rather than discussion-focused is bang on. Most in fact are exercise-only. A study published in The Annals of Internal Medicine (Arch Intern Med. 1996;156:745-752) showed that “heart patients who underwent psychological counselling as part of cardiac rehabilitation programs have greater reductions in psychological distress, blood pressure, heart rate, and cholesterol levels compared to those who underwent cardiac rehabilitation without a psychosocial component.”
Good luck with the EveryDay Health PTSD piece – keep me posted when it’s up, okay?
cheers,
C
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One of the obstacles encountered is the attitude of medical staff; if you’re still able to breathe you’re not too bad off! There is no feeling of obligation to explain, encourage, assist after the event has been mitigated. All that has to be dragged out of the medical staff.
The other problem, especially in the U.S., is what the insurance company will pay for, in reality it is the insurance company dictating what your treatment will be. This alone is extremely depressing and counter productive.
In my case my insurance (Blue Cross/Blue Shield) won’t pay for cardiac rehabilitation. I had to do my own research and come up with my own plan – and forget about consulting your Cardiologist, it takes weeks to get an appointment!
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Hello Julia and thanks for your note. I cannot believe Blue Cross is not funding rehab – absolute stupidity, given what we know about the proven benefits of such programs. I too had excellent extended health coverage through Blue Cross during my heart attack because I worked at the same hospital I was admitted to, but even then I had to pay hundreds of dollars out of pocket for my own rehab program, despite an appeal letter sent from the head of our cardiac rehab program to Blue Cross. They simply replied “not one of the benefits provided by your plan”. Too bad, so sad.
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One realizes quickly that Health Insurance is a business, profit is the motive/objective. Health is just a way of merchandising the product not of any concern of the corporation involved whether it be an Insurance Co., Hospital, or Doctor’s practice. So, with that in mind you have to be beyond assertive, you have to be aggressive and even a pain in the ass to get good care – having someone with the same mindset as a patient advocate is a very good idea as you are focused on staying alive!
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I know too well that people view cancer as a “worse case scenario” than they do heart disease.
After my heart attack, 10 years ago this coming January, a good friend of mine said “Wouldn’t you rather have heart disease than cancer?” Well, her father had died of cancer so I understand her reasoning. Now, my husband has esophageal cancer. It is horrible and yet he has more energy since his surgery and chemo last year than I have. When he was diagnosed more than one year ago several friends and family members were very active in prayer etc. I am thankful for that.
However, I don’t know of one mass or prayer chain developed for me (other than my ever faithful sister who prays for me always). I would have died without surgery. I had The Widow Maker. Also, we went to a fabulous support group called Time to Heal. This group is supported by the Lance Armstrong foundation. I wish there was something for heart patients like this.
Yes, I too ask the question “Where is the survivorship rally?”
Thank God for your heart blog!
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Thanks very much for this, Chris. You have a unique perspective; with both heart disease and cancer in your family, it’s likely more obvious to you the clear differences between the support (or lack of support) you received and that offered to your husband. We have to change this!
Good luck to you and to your hubby.
cheers,
C
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I just had to comment on your “where’s the rally?” question.
WE are too fatigued and our families are too strung out by having to do all those things that we super women used to do. A 3 day walk for heart disease??? We’ll be dropping like flies!
How we wish it wasn’t so!!
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Thank You so much for sharing this. We are so blessed to have you writing on these topics, you have played a large role with my own survivorship.
Thank You,
Karen
H/A survivor since 10-2-09
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Thanks so much for your kind comment, Karen.
cheers,
C.
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Cardiac rehabilitation helps with the survivorship. Some patients stay for many years in Phase III or Phase IV.
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Excellent point. Cardiac rehab may well be one of the few organized survivorship programs available, yet we know that only about one third of eligible female heart patients are even referred to rehab by their physicians in the first place!
Thanks for your input.
C.
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Thanks for sharing. I think that the model is great and goes beyond what cardiac rehab does.
Rehab provides a great initial environment for survivors, the emphasis is on education and exercise; these are central to health, and there is so much more that could be dealt with.
For anyone interested in working on thriving with cardiac disease I’d love to be involved in developing such a program.
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Dina, you’re a nurse so you can bring some clout to the table when it comes to changing the status quo, and perhaps borrowing a useful model that’s already so well entrenched in other specialties. What we really need is a systemic change as opposed to one-at-a-time support (as useful as that certainly may be to the individual!)
Cheers,
C.
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Cardiac rehab is only partially successful as a recovery tool for those of us with heart attack due to coronary spasm. Most centers, however well meaning, are not equipped to handle the elusive recovery of this dx.
One note on cancer versus heart disease- I think most of us would prefer NEITHER!
Carolyn, insightful as always and just what I needed this morning – a reminder that I AM a survivor and to behave like one today!
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You are so right, JetGirl – can I pick “NEITHER” on the life preferences menu please?
“Behave like a survivor” – love that! Thx!
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You are absolutely right, Jetgirl. Cardiac rehab programs typically only address coronary artery disease. I had to find out almost everything about my coronary artery spasms on my own.
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I’ve heard the same complaint about cardiac rehab from survivors of Spontaneous Coronary Artery Dissection – another diagnosis in which the usual risk factors for blocked arteries tend not to apply.
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Wonderful post! All the comments were spot-on as well. I only wish there was more and more communication between patient and medical staff, medical staff and pertinent news agencies. Something is not connecting here for the slowness in awareness (esp spasms and microvascular disease – MVD) to be included not only in social media but cardiology as well! THAT is inexcusable.
Rehab for me was ok. They literally went by my presentation and not a mold. For that I am grateful. I have Spasms and MVD and certainly did not fair well with pushing myself as is usually encouraged. Rehab also did the mind-body awareness classes and although I knew most of what they had to share in diet, stress, depression and emotional exertion, many there did not. In that way, there was some survivorship support.
In general I find if I look well… then I must be well! We are fortunate not to have to go through chemo and lose hair until better… if that were my case in heart disease, I would still be bald…. still not better!
All our signs are on the inside and not as easy to show or dare I say exploit, as the news loves to do.
Awareness and advocacy need to be amped-up and of course need better definitive treatments right through living with “this” heart disease- whatever kind you have. I must say some days I feel we are treading water, even though it does seem the media has covered more heart disease in the past 2 years.
We need a survivorship model and just more NOISE in general!
How do the stats get missed? Seems like pertinent info to me! Hard to ignore.
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Thanks Annette – as the Harvard Women’s Health Watch puts it: “Heart disease – like cancer – is not one, but several disorders.”
Some days I think we have a long way to go – just last year, a U.S. government study found that only half of women surveyed reported they would call 911 if they were experiencing heart attack symptoms!
PS to my readers: if you are looking for more info on coronary microvascular disease, please visit Annette’s Facebook page.
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Perhaps we should shave our heads in unison to show the world how many of us are out here. We could wear red headscarves or something. I’ve never been much of a red dress person anyway.
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Well, I think my friends in the cancer community already have a lock on shaved heads (not that they likely ever wanted that distinction!) Like many chronic illnesses that are invisible, I’ve often thought that neck braces or leg casts or some overt signs might come in handy… 😉
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