Ann MacDonald

The mental and emotional challenges of surviving cancer

One of my closest friends is a two-time breast cancer survivor. Terry (as I’ll call her) has been cancer free for eight years—long enough to be considered cured (generally defined as being in remission at least five years). But in no way is she “free” of cancer. Every abnormal blood test, every callback for another mammogram terrifies her so badly she can’t sleep until doctors rule out a recurrence. In some ways, the ongoing psychological and emotional challenges she faces have been worse than the physical treatments she endured.

I thought about Terry when I read the latest government statistics on the number of cancer survivors in this country. Nearly 12 million Americans—4% of the population—are still alive after a cancer diagnosis.

In many respects this is terrific news, and a testament to improved diagnosis and treatment options. But survivorship comes at a psychological price. We discussed these challenges at length in the  Harvard Mental Health Letter, but here’s a quick look at some of the major issues.

“Damocles syndrome.” According to Greek legend, once Damocles realized that a sword was dangling precariously over his head, he could no longer enjoy the banquet spread in front of him. In the same way, the specter of cancer hangs over some cancer survivors. They can become emotionally paralyzed and have a hard time deciding to get married, change jobs, or make other major decisions.

Fear of recurrence. Given cancer’s potential to lay dormant for a while and then spread (metastasize), cancer survivors often experience ongoing fear of recurrence. Follow-up medical visits, unexplained pain, or even sights and sounds they associate with treatment can trigger bouts of anxiety and fear that are as debilitating as those that occurred during cancer treatment.

Survivor guilt. Although happy to be alive, cancer survivors may feel guilty that they survived while fellow patients they became friendly with during treatment or as part of a support group did not. (Early after a diagnosis of cancer, people first ask, “Why me?” When survivors think about those who have died, they tend to ask, “Why not me?”)

Recognizing these challenges, the Institute of Medicine’s Committee on Cancer Survivorship explored ways to help people rebuild their lives after treatment ends. You can read the report, “From Cancer Patient to Cancer Survivor: Lost In Transition,” for free online or buy it from the National Academies Press.

Given that one in three Americans will face a cancer diagnosis at some point in their lives, living with cancer is a topic that touches all of us. If you are a survivor, or know someone who is, these Web sites may be useful.

If you have suggestions for dealing with the challenges of cancer survivorship, please let us know in the comment section.

Comments:

  1. Cassie Miller

    Cancer is one of those diseases that needs to be watch out so that as early as possible we could prevent it. According to my research the number of people that having this sickness is going higher but as a person I salute to those people suffering from cancer and did survive it.

    As of Maggie Murphy’s story, all I can say is that she was so strong that she did survive but really depression is one major thing that can make us sick. Sometimes depression can lead us into having thought of cutting our selves and it is very dangerous not only for adults but especially for teens and students.

  2. Anonymous

    Appreciate the thoughtful post. gave a psychosomatic insight for cancer.Usually, The psychosocial needs of cancer survivors and their families are often neglected.Situations arise in life that challenge us and make us lose sight of the happiness after overcoming cancer. We can prevail over those challenges, fears and emotional despair by realizing that the only darkness that exists is that which we perceive.

    regards

  3. Danny

    cancer is one of the most dangerous diseases. Not many survivors of this disease. It seems only a miracle could help people survive cancer. If you get cancer as a result of your work, you can file a lawsuit to get compensation. For more information, visit http://www.las-vegas-personal-injury-attorney.us/asbestos-cancer-attorney.htm

  4. Roberta

    Thank you, I have lymphoma and sometimes I feel that I really should not feel sorrow for myself sometimes. But cancer is cancer..And mine will never go away..right now i am ok but the question is when will it come back?
    This article has addressed exactly how I feel. But, thankfully I have a wonderful family.

  5. David

    Good job addressing this… I know so many people that have had a hard time with this.

  6. Dianne

    Ann –

    Thank you for this wonderful article. Indeed, their is a psychological price for survivorship. The psychosocial needs of cancer survivors and their families are often overlooked.

    The Cancer Support Community, a national organization, is a great resource. We strive to optimize patient care by providing essential, but often overlooked, services including support groups, counseling, education and healthy lifestyle programs. I invite your readers to visit the website for more information: http://www.cancersupportcommunity.org. Thank you again.

  7. Jem

    I sell Medigap insurance. One of my patrons emailed me this link. I never thought about the emotional aspects of surviving cancer and found this topic very interesting. Before I sold insurance I served in the Army for over twenty years. I don’t believe many people give much thought to the emotional impact serving in the military can have when they join either. I see several similarities. At least when you turn 65 and you have Medicare, you can get guaranteed issue Medicare supplement insurance. Many do not purchase Medigap insurance and they end up throwing bankruptcy on top of trying to survive cancer!
    [URL removed by moderator]

  8. Helen Marshall

    @Jack Web…what is interesting to me is that the countries that have good national health care systems also treat the patients as adults, who can handle their own tests and who are entitled to know the results in real time. The long wait for results is one of the indicators here of a system that is failing. I agree, it is a privilege to be able to be tested and get results, no matter how delayed, but the underlying problem is a failed system, despite the vast amounts of money we dump into it.

  9. Jack Web

    Kimberly and Helen,

    FYI: here is my response to the New York Times regarding David Rakoff’s article “The Waiting.” (Here’s the link to the article: http://www.nytimes.com/2011/04/17/magazine/mag-17lives-t.html)

    I felt the need to point out that be it tests or treatment, waiting for health care may seem like a nuisance for some but is in fact a privilege. Waiting for care is a privilege denied to millions and millions of Americans who are instead prescribed a lethal dose of fear, depression, pain, and death. Patience is not a virtue when millions are literally being condemned to death by our society.

    My letter to David Rakoff and the Times:

    A year ago I was diagnosed with an aggressive form of cancer. Weeks before, I’d tried to get insurance, yet again. I’ve tried repeatedly over the years. No one would insure me because I had a pre-existing condition: I was in “excellent shape” but I have an arterial stent. An ounce of prevention is worth a pound of cure but in our Banana Republic, when private insurers shut you out, you are denied access to health care period, even preventive care. The inevitable result: cancer and other health issues far worse than the highly manageable pre-existing condition.

    I paid out of pocket to see a local GP and received a cancer diagnosis. When I asked the doctor for a referral for diagnostic imaging she replied “What’s the point? You can’t act on it.” She then returned my check for the office visit and suggested I go home, put my affairs in order, and die, quietly, without making a fuss.

    I made a fuss.

    It took precious months but eventually, against all odds, I found care, for now. I have no assurance that I will have access to care tomorrow. But for me, every day IS fantastic, and precious. It sounds corny, I know. You had to be there.

    In our country it’s a privilege to have results to anticipate. Millions of Americans, tens and tens and tens and tens and tens of millions of good people have no results to anticipate, no care, no hope. They have been shut out of our barbaric, for-profit health insurance system. Millions of Americans would love to be able to wait for the results of tests. Instead, they’ve been told by the President, Congress, Private For-Profit Insurers, and their fellow Americans to go away and die quietly, without making a fuss.

    Tomorrow, I’m going to have a fantastic day —and I’m going to make a fuss, all the days of my life. A really big, messy, loud, honest fuss. It’s called speaking truth to power, to indifference, to hypocrisy, to barbarism. Why not? I’m a goner. I’ve got nothing to lose. And that makes me dangerous. But the truth is that none of us are getting out of this place alive. We’re ALL goners. And that means that we have no excuse, not a one of us, for not making a fuss, a big fuss, a loud fuss, an ugly fuss, a fantastic fuss that can save lives. Who knows, one of those lives may be your own.

    Have a fantastic day.

    • Ava Greenwell (UK)

      Dear Jack,

      Good on you for fighting. It is an incredible system for the richest, most innovative country in the world – and besides being cruel, just stupid – why destroy people in this way? I will remember your letter – probably unbelievably to you, I was about to write a letter complaining about the lack of vegetarian food when my husband was in a local NHS hospital for a serious operation…. all the treatment (and food), and hundreds of committed staff, absolutely free….. your letter really puts things in proportion.

      All the good luck in the world to you,

      Ava G.

  10. Helen Marshall

    Thank you for all the references.

    I have to agree with Jack Web. I’ve lived in various other countries – Spain and Argentina, for example – and your medical tests belong to YOU. In Argentina the radiologist came out after the mammogram and gave you a quick summary of the results. So you went home knowing – good or bad but at least knowing. And you took home your films. I have a complete set of mammograms from those years. Returned to the US, I have to beg for, and sometimes pay for, copies of results. Why?

    Here I once received a letter from the mammography center, dated several days after the screening and even then not mailed the same day, saying “you have a bad result and you must contact your physician right away.” It arrived on Christmas Eve. After several days of hysteria I had a new mammogram taken and they did it again – the letter arrived on New Year’s Eve. In the end I did not have breast cancer. But I will never forget the terror. When my anal cancer was diagnosed last year the pathology report was ready on Monday May 10, and due to various bureaucratic glitches I was not told of the results until the 18th – I had almost convinced myself that everything was ok. Friday screenings are the worst!

    And yes, Mr. Web is right…our system really is a death panel. Why are we, even now, completely unable to acknowledge that the insurance industry contributes nothing to health care, and that the pharmaceutical companies are primarily interested in their profits, despite the fact that much of the research that leads to those profits is underwritten by the taxpayers? And why is it so easy to convince the public that we have the best health care and people in other countries have to wait forever for care, when it should be well known that we spend much more per person and have the worst statistics in the industrialized world.

    My care so far has been billed at over $250,000. Medicare doesn’t pay that much, of course….my blood runs cold at the thought of trying to deal with these bills should the enemies of Medicare manage to privatize it.

  11. Kimberly

    Yes Jack!!!!!!!! Where are these resources? Im 37 and have Stage IV metastic colon cancer. I have insurance, and I do have to wait for my results. Well I got tired of that game, n now I do make a fuss. If they don’t cal me, I call them, or I stop in to ask where my results are, that I would like a copy of MY test results that I’M paying for. Its outrageous…n I can only imagine what it would be like to be uninsured. N now w/this new reform on the chopping block for Medicare n Medicaid. I need to start looking for countries w/ excellent healthcare/universal right? Lol. Jack we need to make a FUS…even a Rukus….wait till the baby boomers start retiring! “”Ets create an awareness campaign!!!!

  12. Jack Web

    Ann,

    This is in response to your April 17 comment in the New York Times, in response to David Rakoff’s article “The Waiting”.

    Our society doesn’t just oversimplify the experience of illness. It kills, it executes millions of Americans by denying them access to care, and then it insists that they make themselves invisible, that they suffer and die in silence, the better to sustain our indifference and denial.

    I know you mean well, but your advice that “Patients not only have to be ‘patient’ with the system but with the rest of us” is indifference at best, a cruel indifference to the millions of Americans shut out by the system. The private, for-profit system is the only game in town —and it kills with a dismissive indifference. This is not a time to be patient.

    I appreciate your mention of resources for cancer survivors. I am a survivor, against all odds. As I noted in my NY Times comment, I was shut out by the system and told to go home and die, quietly, without making a fuss. In our twisted and sick society, I should be dead by now, and ‘rightfully’ so. Cancer survivor —it’s an increasingly elite and privileged class.

    Where is your link to resources for cancer victims who cannot access care, who have no care givers, no health care providers —who can only dream of being patients and survivors because they have no advocates, no resources, no care, no hope?

    What about their anxiety, depression, and painful death? For them our health insurance system isn’t about care. It’s a death squad.

    Jack Web

  13. Ann MacDonald

    Hello readers! There is an excellent essay on living with cancer (and waiting for medical tests) in The New York Times Magazine today, titled “The Waiting.” Here is the link:

    http://www.nytimes.com/2011/04/17/magazine/mag-17lives-t.html

  14. Thomas Sellers

    Ann, Thank you for calling attention to the important tools we provide for cancer survivors on our website. As the oldest survivor-led cancer advocacy organization in the country, NCCS works to advocate for quality cancer care for all people touched by cancer and empowers cancer survivors. I would like to invite all of your readers to check out our award-winning Cancer Survival Toolbox®, a free self-learning audio program to help survivors develop important skills to better meet and understand the challenges of their illness. NCCS is also proud to be a part of the Journey Forward program, which provides tools and resources to help survivors and their physicians build an individualized plan of follow-up care after cancer treatment. On our website, you will have access to a wide variety of free resources and publications for people living with, through, and beyond cancer, like our Teamwork publication, which serves as a cancer patient’s guide to talking with your doctor. Visit our website today at http://www.canceradvocacy.org/.

    Sincerely,

    Thomas P. Sellers, MPA
    President and CEO
    12-Year Cancer Survivor

  15. Carolyn Thomas

    Thanks so much, Ann, for this valuable info on the psychosocial reality of living with a life-threatening condition long after the dramatic diagnosis and treatment are done.

    As a heart attack survivor, I can tell you that the three major issues you list here are universally true for those living with heart disease as well. Just substitute the words “heart attack” for “cancer” and the similarities are profoundly familiar to heart patients, too.

    As Dr. Stephen Parker (an Alaskan cardiac psychologist and a heart attack survivor himself) says: “Having a heart attack is a deeply wounding event” – and he’s not talking about a cardiac event’s physical effects. Like cancer survivors, we are wounded psychologically, emotionally, mentally and spiritually.

    The Canadian Journal of Cardiology recently reinforced what all heart attack survivors already know but their doctors may not: a heart attack can leave people as psychologically traumatized as victims of violence. More on this at “Not Just For Soldiers Anymore: Post-Traumatic Stress Disorder After A Heart Attack” at: http://myheartsisters.org/2009/08/25/ptsd/

  16. Beth Sanders Moore, Founder, CancerForward

    Thank you for addressing this issue, and well. It’s very complex and something cancer survivors, their caregivers and healthcare providers should be talking about more frequently. Appreciate your adding to the discussion and your follow-up mentioning CancerForward.org, as we seek to virtually-connect survivors and share the information they tell us they need.

  17. Elaine Schattner, MD

    Thank you for this thoughtful post on a not-so-simple subject.

  18. pjs

    Ann — Thanks for paying attention to this issue. I was diagnosed with cancer when I was 25, and again when I was 40. I’m now of an AARP age, which is wonderful. But I know that my life, my relationships, and and my ongoing worries about health have all been shaped by my go-round with the crab.

    pjs

  19. Jody

    One of the hardest things is our re-testing our MRI’s our ultrasounds, whatever is required and then the wait to hear results. From one of my cancers, I need results vs. waiting so with my brain MRI my oncologist is wonderful and after I get it, we drive an hour and he lets me know results. With regards to another cancer, I do not get results that day…Often the stress is the wait. We also live in fear every day for re-occurences; just when we get through it….everytime there is pain somewhere we associate it often with something, it is not. Hopefully one day, there will be a remedy. We are all fortunate to have the new medicines, updated technology out there.

  20. Ann MacDonald

    Hello blog readers!

    Shortly after publishing the post above, I learned of another organization for cancer survivors. Here is the link:

    Cancer Forward: The Foundation for Cancer Survivors
    http://www.cancerforward.org/

    And one of my colleagues shared a story about journalists with cancer who have gone public with their experiences. It’s worth a look, for anyone who’s interested in this topic.
    http://www.cjr.org/feature/the_cancer_report.php

    Thanks for visiting!

    Ann MacDonald
    Editor, Harvard Mental Health Letter

    • Maggie Murphy

      I search the net looking for as much information about Survivor’s Guilt and the other issues that are so prevalent in cancer survivors including bouts of depression , fatigue and pain. I am an 11 year survivor of incurable stage four non hodgkins lymphoma because I took decided to fight and a bone marrow transplant in 2004. While I have remained cancer free I have had so many medical problems since transplant I can barely keep my head above water. My first bout with emotional darkness was 2 years after the transplant and it took me 6 months to begin to question the reasons for my depression and feelings of guilt about survival. I took steps to become emotional healthy but a few years later I needed a boost from donor and that sent me right back into feeling dark and questioning what I was doing with my life and guilty about not doing more because I had survived. Is there a really strong organization that can steer me in the right direction about all of this. I function well in life but feel like “I am faking it” much of the time and nobody has any understanding of these issues . There seems to be a built in stigma to admitting you do not feel total elation and complete happiness and fullness because of surviving. Nobody wants to hear about let alone understand the “dark side” to survival. Thanks for your time.

      Best,

      Maggie