The Duke Patient/Family Resource Center is:

• A lending library offering books, audio and video tapes, magazines and free brochures dealing with cancer and certain blood disorders and with issues of coping, survivorship, caregiving, and grieving
• Open 8:30 a.m. to 5 p.m. every day the Morris Clinics are open
• Located in the White Zone, first floor, of the Morris Cancer Clinic, Room 15123.
• Our phone number is 919-684-6955. Our e-mail address is FamilyLibrary@mc.duke.edu

Resource Center Coordinator: Harriet Whitehead, PhD
Cancer Patient Education Program Director: Kerry Harwood, RN, MSN

Cancer Survivorship: A Fresh Focus

A nation of cancer survivors. A recent study by the Institute of Medicine (IOM) startled the medical world. The number of cancer survivors in our population now numbers in the neighborhood of 10 million. (The Institute of Medicine Report, entitled From Cancer Patient to Cancer Survivor, can be accessed at http://www.nap.edu/catalog/11468.html). The aging of the U.S. population, which sends up the incidence (not the rate) of cancer, has combined with improved treatments and early detection. The result is that even as there are more U.S. citizens receiving a diagnosis of cancer than ever before, these people are remaining here with us and conscious of their situation for a lot longer than cancer patients ever did in the past.

Is anyone paying attention to their needs? The appearance of a "Survivors Week" in the clinics, a special "Survivors" issue of CURE magazine, and the rise of medical programs directed to cancer survivors, such as Duke's Center for Cancer Survivorship, alerted many of us to the fact that at least parts of the medical world have waked up to the issues of survivorship and are trying to get their act together. But what are the issues and what is the act? This will be the topic of our newsletter this month.

Different Phases, Different Responses

Defining cancer survivorship sounds easy. Everyone who has ever been diagnosed with cancer is a cancer survivor for the rest of his or her life. But this global definition of cancer survivorship isn't very helpful when it comes to developing comprehensive medical and social service responses. Nor is it that helpful to patients and their families when it comes to orienting themselves to their varied situations.

The acute phase. It is better to break things down into phases. The acute phase of cancer survivorship covers that period of time during which the individual is receiving his or her primary treatment. This is where most of the medical world's attention is focused (quite understandably), and where most of public attention is focused as well.  This is the phase during which the individual will need, and, if all goes well, be able to marshal the maximum amount of family and social support, as well as the maximum amount of instruction concerning his or her situation. An entire genre of literature -  "cancer journey" writings -  exists, dealing primarily with this phase. In books like Betty Rollins' First You Cry, Liz Tilberis', No Time to Die, or Hamilton Jordan's No Such Thing as a Bad Day, to name only three out of dozens,you can read how others (a) heard the bad news, (b) groped their way through the medical maze, (c) found out who their real friends were, (d) dealt with disturbed family dynamics, (e) summoned the spiritual resolve to endure treatment, and (f) finally prevailed - as you, the reader, hopefully will do also.

People whose cancers do not respond to the primary treatment, those experiencing early recurrences of their cancer, or those experiencing a second, different, cancer not long afterwards, endure a roller-coaster of protracted acuteness that preoccupies medical providers and that often makes for an entrancing story as well (Hamilton Jordon is a case in point. See also Dan Shapiro's Mom's Marijuana, or Bill Soiffer's Life in the Shadow).

The extended phase. If you evade or eventually get off the roller-coaster, you enter what they are now terming the extended phase of cancer survivorship. Here a rather large vacuum opens up. How much medical concern do you think you can drum up after your doctors have given you that last warm, congratulatory hug? Who do you go to with the latest mystery symptom? What has become of that incredible support team that rallied round you during the crisis? How many books  can you find with titles like "The Rest of Your Life"? I ransacked our shelves and came up with only five. Two were not quite on the money. Two, while good, were a bit out-of-date.  Number five is the psychologically astute Dancing in Limbo, by Glenna Halvorson-Boyd and Lisa K. Hunter, which deals as well as anything I've read with the issue of uncertainty. More about this book below.

Permanent survivorship. Finally, there are cancer survivors out there who are well past the 5 year mark. These people would nowadays be termed permanent survivors. Some have put the experience behind them and dropped out of sight. Others have transformed their experience into a mission to help others.  Their presence is often felt, very beneficially, in cancer advocacy, cancer fund-raising, and cancer support organizations. Many of the authors just cited above would qualify for this category of survivorship, as would many of the big names in fund-raising and advocacy, e.g. Lance Armstrong, of the Lance Armstrong Foundation, the ever durable Fran Visco of the National Breast Cancer Coalition, Fitzhugh Mullan, co-founder of the National Coalition for Cancer Survivorship, Susan Nessim, the founder of the Cancervive organization and co-author, with Judith Ellis, of the book Cancervive, or Steve Dunn, the 15 year survivor of stage IV kidney cancer, whose web pages on kidney cancer and clinical trials has been a stand-out resource for kidney cancer survivors. (Dunn died in 2005 of an illness unrelated to cancer.)

But whether one stays affiliated with the cancer world through service, or shakes the dust from one's feet, one's needs as a permanent survivor are not what usually gets addressed when medical and mental heath providers sit down to work out better programs for cancer patients.

Typical Needs of Cancer Survivors

Medical issues in extended and permanent survivorship. Responses to survivorship must start by calling a spade a spade: the medical needs of cancer survivors are typically greater than those of their matched peers, even when the cancer event is many years in the past.

• Surgery may have left the individual missing a body part or coping with long-range surgical effects such as lymphedema, bowel adhesions, nerve impairment, or reduced functioning in some important system - respiration, cognition, digestion, or excretion.
• Radiation and chemotherapy, if used, raise comparable issues of reduced functioning, as well as increasing the risk of second, treatment-related cancers, further down the line.
• Impaired sexuality and loss of fertility are common issues, especially when highly toxic drugs must be taken to battle the cancer, or when surgery and radiation affect intimate parts.
• Chronic pain plagues the lives of some long term survivors.
• Many survivors also struggle with fatigue for a period after their release from treatment. Some are dogged by fatigue permanently.

Psychological issues in extended and permanent survivorship. For many, the psychological issues of returning to the so-called normal world are profound. Fatigue, body alterations, and loss of functioning can badly impact a person's self-image. Life-limiting as well is the dread of recurrence and the sense of vulnerability that opens up once the survivor is discharged to get on with the rest of her or his life. In Dancing in Limbo, Lisa Hunter writes:  "When I returned to work and "normal" life, I crashed. My work, my relationships, and my home were all the same, but I was different. ...My clarity was gone, and my brain felt as if someone had melted cheese over it. I made a dim connection with what widows experience after the funeral is over, when friends drift away and they are left with the reality of loss."

Others report an inability to get over the anger at not having been warned about the extent of disabling side-effects. Those who have had to become more dependent upon family and friends may chafe at this dependency and unwittingly alienate the people who are trying to help them. Close relationships are disturbed as well by issues of infertility or disrupted sexual functioning.

Financial, insurance, and employment issues in extended and permanent survivorship. As if all of the above were not enough, the cancer survivor often faces heavy indebtedness, formidable obstacles to getting health and life insurance, and difficulty finding appropriate employment. Workplace discrimination is one factor in this predicament. So too, often, is some degree of lingering impairment.  One study showed that individuals with a history of cancer, but no other chronic disease, were three times more likely to be unable to work than their matched peers with no history of cancer [From Cancer Patient to Cancer Survivor, Hewitt, Greenfield and Stovall, eds. p. 369]. Professionals manage better than laborers because heavy physical labor presents the greatest challenge. This means, however, that one option for the professional - to move down the income scale and get by cleaning houses or hauling sheetrock - may be ruled out.

Coping with one's new life of surviving, but with physical issues, can be expensive. For those with body-part loss, the insurance company may spring for the first prosthesis, but not for the inevitable upgrades that will be needed as time goes by.  Occupational, physical, and speech rehabilitation cost money, and once again, insurance coverage has its limits. Housing alterations and moves are completely on you. Fertility treatments, as well as adoption programs, can prove enormously costly. So too corrective plastic surgery, breast reconstruction, or implants. This list goes on. One patient remarked that the three keys to happy, healthy survivorship are money, money, and money.

We think there are a few more keys than this, though the point is well taken. Here are some suggestions that may prove helpful:

Getting on with the Rest of Your Life

Read a book, get a grip. Nights of anxiety attacks? Days of poor focus? It helps to sit down and do a comprehensive survey of your situation. To Do lists can drive away formless anxiety. Problem-solving strategies others have found useful may prove useful to you as well. And getting a handle on the range of issues you might have to deal with, and well as a glimpse of those that, thank god, you don't have to deal with, can ultimately yield the plan and the lifestyle changes that will make you a more comfortable survivor.

Books can offer a place to start. The following are available in the Patient/Family Resource Center.

The Cancer's Survivor's Guide, by Michael Feuerstein and Patricia Findley.

I'd like to let you in on a little secret. Remember all of that time you spent in the waiting room? You waited in the waiting room because other patients needed [your doctor's] time. Your doctor isn't going to tell the last few patients to go home at 5:00 pm because people like you took up too much of his or her time. No, your doctor will continue to see patients until the waiting room is empty. So don't worry about those other patients. If your doctor consistently makes you feel as if you are taking up too much of his or her time... maybe it's time to find another doctor.  - Feuerstein and Findley

This is the latest and, in my opinion, the best, of overall guides to the rest of your life. Feuerstein, a clinical psychologist, has survived brain cancer, with lingering impairment. Parts of his story and excerpts from survivors of other cancers are larded throughout the book. He and Findley give us strong chapters on putting together your health care plan, communicating with doctors, and interpreting medical studies. Their "Six Stages of Problem Solving," set out in chapter 2 is simple but powerful. Their chapter on stress reduction (chapter 6) is worth the price of admission in itself. There are excellent discussions of "chemo-brain." It's also the only book on our list that has an up-to-date story on insurance.

Dancing in Limbo by Glenna Halvorson-Boyd and Lisa K. Hunter.

Survivor grief is a paradox. It seems wrong to grieve when we have got what we most wanted - another chance at life. The early high [of treatment] deceived us. Normal grief does not begin on a high. So the process is in motion before we recognize it. Furthermore, we are grieving major losses. Most obviously, we mourn lost body parts or functions. But survivors also grieve a deeper loss. Our most comforting illusions are gone. We are both mortal and vulnerable, and we know it beyond a doubt. It is simply awful. - Halvorson-Boyd & Hunter

My favorite for psychological counseling on survivorship. They take on the hard issues of recurrence fear, post-traumatic stress, deteriorating family relationships, simplistic medical theories coming from your friends (and other forms of denial), divorcing, dating, and recreating one's life after being touched by death. Their own stories and those of friends and acquaintances are interwoven throughout.

After Cancer: A Guide to Your New Life by Wendy Schlessel Harpham. Only good through 1994 on insurance and medical issues. Wendy Harpham is a survivor of multiply recurrent lymphoma and also a doctor. It is the doctor who shines through here and the book is organized to let you flip through to the topics that interest you, ignoring the others. A bit antiseptic, but wide ranging.

Can Survive: Reclaiming Your Life after Cancer by Susan Nessim and Judith Ellis.

When cancer slams into your life, your friends are among the first to feel the shock waves. Like buildings shuddering in an earthquake, friendships will undergo a rough-and-tumble test of their strength and durability. Some relationships will come through the trauma no worse for wear; some may even be reinforced, whereas others will have collapsed or crumbled. - Nessim and Ellis.

This book replaces their earlier one entitled, Cancervive, but is updated to 2000 on medical and insurance issues. Extremely rich in survivor stories from the hundreds of people Susan Nessim has met in the course of her life as a survivor advocate (excerpts from these stories are quoted below). There will be somebody in here whose situation mirrors your own.

Take advantage of the latest medical focus on survivorship. In the Survivorship issue of CURE magazine, they write, "Survivorship is now a prescription - bearing its own set of guidelines and, finally, its own treatment plan." This is weird, what does it mean?

The "prescription" is a response to complaints by primary care doctors and by patients. Both parties need to have the patient's cancer history and treatment information stored in one place (even though many providers may have been involved) and both patient and primary care physician should be in possession of a succinct summary of this information and a follow-up plan for monitoring. If seeing to this is left entirely to the patient, many patients will be overwhelmed. (Some people's treatment history alone would fill a van!) For many, especially for patients who move permanently from the area, much gets "lost in transition."

A survivor "prescription" attempts to address this transition.  In a growing number of cancer centers, patients - if they request it - are now able to acquire from their cancer team a brief summary of their medical history highlighting the issues that the primary care physician must address and is competent to address as the patient now enters the world of extended survival. An exact diagnosis of the cancer and an itemization of treatment are included. Actual and potential after-effects are listed that must be watched or watched for. Recurrence surveillance intervals are noted. And a list itemizing recommended ways to maximize survival for this particular patient, or his/her offspring, may be included -e.g. smoking cessation, speech rehab, exercise, family counseling, genetic counseling, etc. It should be clear in this plan which parties are responsible for what. The plan will need to be updated from time to time.

Because some readers of this newsletter may find that a transition plan is not routinely provided to the doctor or doctors into whose hands they are committing their future care, we have included, at the end of this newsletter, a copy of the "prescription" published in CURE magazine's "Survivorship Issue."

You may access back issues of CURE, as well as apply for a free subscription by going to their website at http://www.curetoday.com/. Once you're there, notice that they are bringing out a new magazine, HEAL, aimed specifically at extended survivors.

Investigate the psychological and spiritual resources available in your community. Almost all extended and permanent survivors speak of the importance to them of life-enhancing, stress-reducing, or faith-strengthening practices that they managed to acquire at some point in their cancer journeys. For many, a faith community enfolded them during their acute phase and formed the basis of new social ties and faith practices that they have found sustaining and will continue to use.

Others hit upon sustaining practices in their exploration of the "complementary and alternative" therapies that come to the attention of so many cancer patients. In any city of reasonable size, one can link up with yoga classes, meditation groups, spiritually-derived exercise programs like pilates or chi qong, as well as medically-oriented specialty classes and support groups of all sorts. Some shopping around is in order for the survivor seeking orientation. Often a support group is only as inspiring as the individuals in it at the time. Specialized exercises may not be tailored to your precise needs. One guru's taped lessons may prove disappointing, another's uplifting. But almost always, stress-reduction of some sort combined with a program more specifically focused on one's more distressing issues (e.g. chronic pain, chemo brain, energy drain) can make an enormous difference in post-cancer well-being.

The world of "fitness" has opened up vistas for survivors as well. We have met or heard of cancer survivors who took up mountain climbing or dragon-boating, canoed down the Yukon, signed onto "The Amazing Race," or chopped two cords of firewood that first winter to gratify their souls and whip their bodies back into shape. Sometimes it takes only one mountain to make you happy.

Address those financial concerns. This is a newsletter in itself and one that we have done already. I recommend a perusal of our April 2004 issue entitled "Dealing with the Costs of Cancer Treatment."

Finding suitable employment is the one aspect of this that we have not gotten around to. For the moment, we would recommend a visit to job search seminars in your area, and taking up volunteer work while you search. Often volunteering leads to paid work in the area you chose to volunteer. It also widens your social network. Cancer survivors, who volunteer in the assistance of cancer patients, often find their history an asset when a paid job opens up. The Duke Cancer Patient Support Program or Cornucopia House might be a starting point for people in the Triangle. The Duke Cancer Patient Support program can be reached at 919-684-4497; and Cornucopia House at 919-401-9333.

Take time for relationships. Just about everyone emerges from the cancer experience realizing the importance to them of family and friends. They vow to never let these relationships slip out of focus. But they can, especially when there is the need to find work and get back into the daily grind. An extra phone call or two per day, and a determined filling out of one's social calendar every week will go a long way to keeping one's friendship networks alive. And an expansion of the daily and weekly time slots for "family time" should be written into every survivor's survivorship prescription.

Follow recommended post-cancer lifestyle changes. Here's the harder part for most of us. Take these up as your abilities permit. If you take quitting tobacco and exercise as your first two, it may give you the strength to take on some of the others.

• Give up tobacco use. Tobacco is one of the most carcinogenic substances in the human arsenal. It is implicated in lung, head-neck, bladder, kidney, pancreatic, gastric, colorectal, and breast cancer. You cannot use it in any form and be safe. If you confine your lifestyle changes to just quitting tobacco you'll be giving your body a tremendous relief.

• Avoid obesity. It would be best not to carry excess weight at all. However we have to be realistic. Crash diets are worthless and not healthy for those surviving serious illness. Tiny-step- by-tiny-step diets work quite well, on the other hand. Eliminate soda pop one year, the next year a desert category (like cookies, ice-cream, or fudge), the next year another desert category, etc.

• Reduce alcohol consumption. Alcohol is a tumor-promoter rather than a direct carcinogen, but it's apparently a pretty powerful tumor promoter. Put it together with tobacco and you've got a real supercharged cancer generator. How much alcohol is too much? Unfortunately the cancer risk seems to be completely dose-dependent. One drink a day = some risk, two drinks = even more risk, and so on up the ladder. Do what you can.

• Exercise regularly and seriously. Ideally, you should obtain professional advice and come up with a plan tailored to your body's needs and abilities, a plan that will bring you up to the standard of fitness appropriate to your age and health condition. Exercise, for those who could do it, has been found to prolong the lives of all cancer patients, with whatever cancer, even those who never enjoy a remission from their cancer.

• Lower the unhealthy components of your diet - saturated fats, trans-fats, salts, red meats, meats from animals medicated with hormones or antibiotics. If packaged meat does not say that it is hormone and antibiotic free, then it is not. For unmedicated chicken, pork, and beef, you may have to seek out a health-oriented supermarket like Whole Foods®.

• Increase the healthy components of your diet - fruit, vegetables, grains, and healthy oils such as canola and olive oil. (See our newsletter of February 2005 entitled "Lifestyle Update" for an expanded discussion.)

• Assess your environment for carcinogenic hazards such as diesel fumes, radon gases, second-hand smoke, polluted drinking water. Cutting down the breathable environmental hazards is especially important for those surviving with lung impairment.

• Get sufficient Vitamin D, either from sunlight or from supplements. Vitamin D is proving to be a tumor retardant. (See our newsletter of February 2005 entitled "Lifestyle Update" for an expanded discussion.)

Survivors Speak About Their Issues

"The issue really complicates dating. When I do meet a guy I like, I feel that we have these invisible hurdles to cross before I can even think of a relationship with him. Once I've told him about the cancer - if he's still around - I'll go on to let him know that treatment caused me to be infertile. Then I brace for the reaction...If nothing else, I've found this is a great way of weeding out jerks." Talia, in Can Survive.

"I had more than a quarter of a million dollars in medical bills the year I was diagnosed, covering chemotherapy, radiation, and a bone marrow transplant. It wiped me out financially. I had no choice but to turn to Medicaid. Fortunately, it paid for everything I couldn't pay. But now I'm stuck. If I go back to work, I'll be disqualified from receiving Medicaid. It's like the system has shut me out." - Lilly, in Can Survive.

"The most difficult part of my recovery was adjusting to the effects of treatment and the anger it has generated. Since my cancer I've become totally dependent on my family for everything. I am unable to return to my former line of work. My depth perception and motor skills have been affected to the point where I can no longer drive a car. My life is so different now, and some days that's very hard for me to accept." - Jose-Luis, in Can Survive.

"My parents didn't tell me I had cancer until I was 12. Even then, I never really got the details. Families deal with cancer in different ways. My family chose to deal with it by not dealing with it. By the time I was a teenager I had become very angry and resentful that my family had handled my illness the way they did. For example, the radiation had affected growth on the left side of my torso. It also left me with a curved spine. A lot of things that could have been done in the way of reconstructive surgery were just never addressed." -Carla, in Can Survive.

"During surgery, the doctor had removed some of my abdominal muscles, which made lifting heavy objects nearly impossible. That caused problems at work, since my employer required all employees to perform every store duty, from manning the cash register to stocking shelves. I asked if I could be assigned to another position, something that wouldn't require a lot of lifting. That wasn't possible according to my supervisor: to do so would mean bumping another employee out of his position. So instead, I was laid off." -Fritz, in Can Survive.

"More than two decades after my own cancer treatment, I still find it difficult to accept that I limp. Walking past a store window, I have trouble identifying with the reflection I see. The image doesn't jibe with the "me" still preserved in my mind's eye, the me that knows what it feels like to run, to ski, to be, quite literally, fast on my feet." Susan Nessim, in Can Survive.

"Every ache, every wheeze, every bubble of gas I had foretold rampant unseen tumors. Sometimes I was able to see the humor in my obsession with my body, but only with the help of others and not very often." - Lisa K. Hunter, in Dancing in Limbo.

The "Survivorship Prescription" -- Example from CURE Magazine

The following plan was at one time present on the CURE website, http://www.curetoday.com/backissues/v5n3/chapters/survivorship/index.html

under the side button, "What a survivorship prescription looks like." In case that link has gone dead, we reprint a simplified version below, with permission.

Step 1: CANCER SPECIALIST: DIAGNOSIS AND STAGING.

Name: Jane Doe

Birthdate: 4/11/1967

Date of diagnosis: 5/11/2006

Diagnosis: Stage 2A invasive ductal carcinoma...etc

Step 2: TREATMENT SUMMARY

Surgery: Lumpectomy ...etc

Chemotherapy: Four cycles of ...etc

Radiation: Four weeks of radiation

Hormone therapy: Five years of ....etc

Complications/side effects: Nausea and vomiting ; hair loss; fatigue

Step 3: ONGOING CARE PLANS

A. LONG-TERM and late effects monitoring needed:

Surgical: Lymphedema (check arm for redness, swelling, impaired range of motion)

Chemotherapy: Fatigue; minimal cognitive dysfunction; weight gain; sexual dysfunction; increased risk of bone marrow damange and/or heart dysfunction after anthracycline-based therapy

Radiation: Breast pain; muscle atrophy

B. SURVEILLANCE for recurrence:

Clinical:

1. Monthly self-breast exam (report new lumps on breasts, chest and/or armpits)

2. History and physical breast exam every three to six months after treatment for the first three years, then every six to 12 months for the next two years, then annually.

3. Annual pelvic exam

Imaging: 1. Annual mammogram

Surveillance for secondary cancers: 1. Report bone tenderness; pain; cough; shortness of breath (data not sufficient to recommend routine bone scans, blood counts or CT scans)

Recommendation for prevention:

1. Genetic counseling

2. Exercise program/ low-fat diet

3. Osteoporosis prevention therapy

4. Smoking cessation

Psychosocial issues that need addressing:

1. Body image

2. Depression

3. Fear of recurrence

C. IDENTIFY PHYSICIAN responsible for monitoring toxicity, recurrence and other issues.

Primary care physician:

1. Address physical/emotional needs

2. Deliver chronic care needs that are feasible in the primary care setting

3. Refer for periodic evaluations and issues requiring specific expertise.

4. Consult with specialists in areas of uncertainty

Cancer specialist:

1. Provide guidance and specialized treatment as needed

2. Keep primary care physician informed of treatment plan

3. Option to return patient to primary care physical for implementation of plan and for care of other health needs

Other specialists:

1. Genetic counselor

2. Dietitian

3. Physical therapist

4. Psychologist

5. Cardiologist