by: David Haas

Few things in life are as tragic as a cancer diagnosis or the treatments. Those who are diagnosed have many questions to consider: what kind of treatment is best, how will this affect my career and family, how can I cope with this? The family and friends of cancer patients must also learn to deal with this news and how to help the patient. One of the worst things about cancer is how many people it impacts. The flip side of this is that because so many people are impacted, they can offer support and comfort to each other.

Cancer networks are designed to help people impacted from cancer by bringing them together in a supportive environment where they can share stories of hope, grief, loss, and advice on how to cope with the everyday realities of living with cancer. These networks are also available to those in remission and the friends and family of patients. These networks provide comfort to the members and allow them to talk about things only those impacted can understand, as well the difficulties of being a caregiver or watching a loved one suffer.

A rare or terminal cancer diagnosis is even harder for most people to come to terms with. A Mesothelioma diagnosis can be very isolating and one should take advantage of one of the many support groups to help deal with emotional side effects as well as share personal stories and advice on how to cope with their mesothelioma prognosis. The simple act of talking about cancer can be very cathartic and help the patient’s process what is happening to them and express emotions and thoughts that can be difficult to talk to others about.

A cancer diagnosis can be very isolating and cause people to withdraw from their friends and social lives. Cancer networks routinely put on social events to draw together those who are affected, and provide a safe place to interact with others without the need to be self-conscious about the side effects of cancer treatment. Many networks also provide classes and events on everything from nutrition, pain management, and yoga to art classes. This allows cancer patients to be among people who understand their situation while still being productive and having fun, as well as providing valuable knowledge to anyone seeking to better understand their situation and options.

Cancer patients and families have enough challenges and hurdles to overcome and unfortunately, financial burden is one of them.  Normally, healthcare insurance policies only cover a fraction of the cost associated with expensive cancer care.  As a result, patients and families members need to identify resources for financial assistance.  In this article, we will review a few options that some families may want to consider when they evaluate their personal financial situations.

Please note that this article is meant to be for informational purposes and is not meant to communicate financial advice and families should still consult a lawyer or professional financial planner.

Foundations

While there are several foundations and non-profit financial assistance programs available to cancer patients, a few of the more well-known cancer foundations include:

Patient Access Network Foundation (PAN):

This non-profit 501c3 foundation is unaffiliated with its financial sponsors and is focused on assisting patients who are in-need with their out-of-pocket costs associated with their cancer treatment.   They are a national organization and have been recognized as one of the largest financial assistance organizations available to cancer patients.   In addition to providing financial assistance, PAN also helps educate patients and families on how to best manage their financial debt while battling cancer.

HealthWell Foundation:

This foundation provides patients with assistance in affording prescription medications, specifically addressing out-of-pocket costs incurred via prescription drug co-insurances, co-pays, deductibles and even healthcare insurance premiums.  The foundation currently provides assistance for select tumor types based on their secured funds.  Therefore, for cancer type coverage, please visit their disease page (http://healthwellfoundation.org/diseases.html)

CancerCare:

This national non-profit has partnered with the Susan G. Komen Breast Cancer Foundation to create the Linking ARMS program, providing limited financial assistance for hormonal and oral chemo, pain and anti-nausea medication, lymphedema supplies and other medical treatment care for women with breast cancer.  They have also partnered with the Avon Foundation to provide financial assistance to low-income, underinsured or uninsured women throughout the country who need supportive services relating to the treatment of breast and cervical cancer.

Income from Life Insurance Policies

Other sources of financial income for cancer patients may include viaticals and accelerated life benefits from their life insurance policies.  These options are particularly sensitive on a case-by-case basis and should be carefully considered whether they are right for them.

Viaticals

Viaticals are the sale of the patient’s life insurance policy for immediate cash with another insurance company who agrees to buy policies from people with terminal illnesses.  This insurance company becomes the new owner of the policy and the sole beneficiary of the policy.  It pays the premiums so long as the patient is alive, and when the patient dies, the death benefit goes directly to the viatical company.  Patient families and heirs will not receive any of the death payout, however, viaticals offer immediate assistance to help pay for food, shelter, doctor visits and other pressing needs.  This extreme option helps ease the stress of financial concerns.

Accelerated Life Benefits

Accelerated Life Benefits act similarly like personal loans on the patient’s life insurance policies.  Insurance companies make it possible for policy owners to collect part of their death benefits early to help cover extraordinary expenses.  These benefits are not intended to replace normal health insurance or long-term care insurance, but they can provide extra help with needs that result from terminal or catastrophic illnesses.  For greater detail, please consult the American Council of Life Insurers.

We will be reviewing additional financial options in the future since financial assistance is a real and pressing issue affecting several cancer patients.   However, it’s important to know that there are available resources to help patients and families address the cost of cancer care.

For cancer patients and families where they’ve conquered such a terrible condition, the next step in the journey is developing a personalized follow-up care plan to manage the possibility of cancer recurrence.   In this post, we outline 10 key questions that many patients have asked during the follow-up care phase.

Though every patient is different, two common objectives in the struggle of “life after cancer” include: (1) managing the possibility of recurrence and (2) returning to normalcy.   In reviewing real questions recommended by cancer survivors across multiple support groups, we found the following 10 questions to be repeatedly considered when engaging their oncologists and nurses:

1. Which doctors should I see and how often should I schedule a routine visit?
2. What follow-up tests do I need, if any and how often do I need to perform these tests?
3. What symptoms do I need to watch out for?
4. How should I adjust my lifestyle that’s right for me?
5. Can we discuss ways to monitor any long-term effects of my cancer treatment?
6. What options are available to me to relieve pain, fatigue, or other problems following my cancer treatment?
7. How long will it take me to recover and feel more like myself?
8. What resources are available to me to help me pay for my cancer treatment?
9. What support groups are available to me to help me begin this new life?
10. What should I do to maintain my social and emotional well-being?

In addition to these questions, most patients and support groups have recommended that being organized when it comes to their medical and treatment history, surgeries, tests, financial bills, and experienced side effects have been extremely helpful when developing their follow-up care plan.

Crafting a personalized follow-up care plan with your oncologist, nurse and primary caregivers is extremely important when managing the potential of cancer recurrence.  When discussing these questions, we recommend taking notes, having a caregiver help take notes or tape-recording the discussion.  It will be a good idea to review these notes at a later time.

Other follow-up services which may be helpful to survivors may include: support groups, couples counseling, genetic counseling, fertility/sexual counseling, home care services, nutrition counseling, physical therapy, pain management and occupational therapy.  When considering these services, it’s important to also find out the specific eligibility requirements for these services.

The life-after-cancer journey is not a easy one, but fortunately, there are several available resources and services to support you in leading a new life.

Within the last 20 years we have seen significant improvements in the treatment of colorectal cancer, yet this indication still represents one of the most prevalent and deadly tumor types with 142,570 new cases and 51,370 deaths each year.  This year at the 2011 ASCO meeting in Chicago, a great historical treatment perspective on the advancements in the treatment of metastatic colorectal cancer was shared, from the first drug (5-FU) to be approved in 1959, to newer targeted therapies that specifically attack tumor blood vessels that feed cancer cells oxygen and nutrients.  Given advancements in medicine and molecular biology, physicians now have more therapeutic options and genetic tools that can help personalize treatment and lead to better patient outcomes.

Without question, our understanding of the molecular basis of colorectal cancer is improving treatment outcomes and survival rates.  Since the 1960s, colon cancer incidence has decreased by 40% and mortality by 25%.  The median survival for metastatic colorectal cancer once stood at 6 months prior to the introduction of 5-FU into the market and now patients can live longer than 20 months as a result of newer approved therapies.  Newer combination therapies and genetic tests will likely improve survival even more as we learn what underlying genetic changes contribute to the development and progression of this terrible disease.

Genetic and physiological tests that are currently used in colon cancer include the following:

• Pharmacodynamic biomarkers – tests that can help determine whether a drug is working (example: some drugs cause skin rashes on patients and these rashes can help determine whether the drug is active and not being quickly metabolize by the body).  These tests help determine whether a drug dose must be lowered or elevated

• Predictive biomarkers – tests that predict the outcome of certain therapies (example: patients harboring normal copies of a gene called KRAS are more likely to benefit from therapies such as Erbitux or Vectibix).  Tests help determine which patients are likely to benefit from a given therapy

• Prognostic biomarkers – tests associated with outcome independent of therapy (example: tests help determine whether a given patient is at greater risk from dying from the disease compared to those patients testing negative for such a test)

We are halfway through the year and the FDA has already approved a number of novel cancer treatments. Yervoy was the first advanced melanoma therapy to be approved in over 13 years, Zytiga the first oral medication approved for advanced forms of prostate cancer, and Zactima the first oral medication approved for the treatment of a rare form of thyroid cancer. These approvals expand the treatment options for many cancer patients with few previous alternatives. Although this represents significant advancements, it does come at a significant cost. Some of these therapies, for example, can cost over $5,000 a month, requiring many patients to seek financial assistance from manufacturer programs and / or foundations.

Navigating the financial assistance landscape can be difficult. Luckily, there are great resources available that can help every patient pay for therapy. Below are some usefull resources that can be used to help reduce your copays and treatment costs.

The Chronic Disease Fund

The Chronic Disease Fund offers assistance for cancers of the prostate, liver, lung, pancreas, thyroid, colon and breast. You can enroll into their disease funds online and they will work most pharmacies to help reduce a patient’s drug copay throughout the year. They are often the preferred foundation for many specialty pharmacies and oncology practices given their extent of fund availability and fundraising capabilities.

The Healthwell Foundation

The Healthwell Foundation also represents a significant source of funding for cancer patients. Their disease funds include common cancers as well as more rare tumors such as chronic myeloid leukemia, cuteneous T cell lymphoma, and metastatic melanoma. Given their volume of funding requests, their colorectal, breast, brain, and lung cancer funds are currently closed until more donations are provided.

The Patient Advocate Foundation

The Patient Advocate Foundation offers copay relief for many common and rare cancers. They also provide many links to important web resources to help patients with therapy education, clinical trials information and management of symptoms. They also work with many other foundations to help patients find assistance in cases when their disease funds are closed or unavailable.

The Assistance Fund

The Assistance Fund provides copay assistance for more common cancers such as breast, colon and lung. In addition to providing financial assistance for drug copays, they also assist patients with costs associated with their insurance deductibles. Further, they help patients remain on therapy through their extensive compliance and adherence programs.

Cancer Financial Assistance Coalition

CFAC is a database that allows one to find regional and / or national assistance for most forms of cancer at the zip code level. You can search for medical expense, transportation, or even housing / lodging assistance.

More than a decade has passed since a groundbreaking article, The Hallmarks of Cancer, was published in Cell by Douglas Hanahan and Robert A.Weinberg that in many ways crystallized the scientific community’s “roadmap” for studying and treating cancer.  Now, the authors have revisited this framework in a recent article published in Cell, The Hallmarks of Cancer: the Next Generation, adding additional areas of focus underlying the tumor-host relationship, which promises to fuel additional work in the fight against cancer.

Much has happened since the original publication, in which the authors proposed six hallmarks of cancer development as a framework for how the complex multi-step process towards disease fits together. Unsurprisingly, research and treatment has focused during these years on targeted therapies, which specifically take aim at the “hallmark mechanisms” described by Hanahan and Weinberg.

The original six hallmarks of cancer development and examples of how treatments have been developed with these targets in mind include the following:

1. Sustaining proliferative signaling: Therapies include EGFR inhibitors
   
2. Evading growth suppressors: Therapies in development include cyclin-dependent kinase inhibitors
   
3. Activating invasion and metastasis: Therapies in development include inhibitors of HGF/c-Met
   
4. Enabling replicative immortality: Therapies in development include telomerase inhibitors
   
5. Inducing angiogenesis: Therapies include inhibitors of VEGF signaling
   
6. Resisting cell death: Therapies in development include proapototic BH3 mimetics

When in March of this year the authors published an update to their framework of cancer biology in Cell, they introduced four additional hallmarks of cancer development:

1. Avoiding immune destruction
2. Tumor-promoting inflammation
3. Genome instability and mutation
4. Deregulating cellular energetics

Already, the therapeutic implications of these additional hallmarks of cancer development are being targeted by researchers.

Therapies in development targeting cancer cells’ ability to avoid immune destruction include the area of immune activating anti-CTLA4 mAb agents. Many selective anti-inflammatory drugs are available and being developed to target tumor-promoting inflammation.  PARP inhibitors target genome instability and associated mutations. Finally, aerobic glycolysis inhibitors target deregulating cellular energetics.

The “road” from theoretical thinking to practical medical strategy to a well-funded study to an actual cancer therapeutic is travelled by many visionary researchers across the globe, one lab building on the finding of the other. Collectively, they inch towards the goal in the fight against cancer.

The significant value of Hanahan and Weinberg’s work is not in the development of safe, effective therapies themselves, but in the structure they provide to a highly competitive community of research scientists at countless institutions. Adding structure to this complex area of clinical research, without which, the scientific community would be less focused on the high impact anti-cancer targets, paves the way for thousands of studies in the areas that matter most, based on the underlying science.

It is the structure in thinking, and focus provided that is the key to progress. And with great optimism, we see a new, more comprehensive “roadmap” directing the world towards the next generation of anti-cancer therapies.

Chemotherapy and radiation treatment often times leave cancer patients with side-effects that severely impact various aspects of their quality of life.  In this post, we’ll touch upon some of the dietary, physical and social options available to battle the side-effects induced by chemotherapy or radiation therapy treatment.

Dietary Side Effects

Loss in appetite is a common side-effect experienced by patients who undergo chemotherapy.  This loss in appetite results in a decreased protein and nutrient intake making the patient’s road to recovery more difficult.   According to the National Cancer Institute, cancer patients complain that certain foods like meat may be bitter or taste metallic.  A patient’s sense of smell may also be affected due to chemo treatment attacking healthy cells as well as diseased cells.  Usually, these changes in sense of taste or smell will return to normal once treatment ends.

With the body already in a weakened state, caregivers will need to make sure patients not only eat their meals but also eat the “right” types of foods.  A few recommended ways to combat the change in sense of taste or smell by the National Cancer Institute are the following:

• Choose foods that look and smell good
• Marinate foods with fruit juices, wine, salad dressing and other spices
• Try tart foods and drinks
• Make foods sweeter
• Eat with plastic utensils rather than metal ones
• Discuss meal and options with a dietician

To battle appetite loss, other suggested methods include:

• Eat smaller meals, but more frequently
• Drink liquids throughout the day
• Drink a liquid or powdered replacement
• Have easy-to-carry snacks readily available

Eating and getting the necessary amount of nutrition is extremely important for patients during the recovery and healing process.

Physical Side Effects

As part of chemo and radiation treatment therapy, most patients experience side-effects which affect their physical appearance, leaving them feeling depressed.   Common physical side-effects include discolored or burnt skin, loss of eyebrows, hair follicles and acne.  Fortunately, organizations like Look Good…Feel Better, a 501c3 non-profit organization, aim to help women cope with these terrible side effects.   They understand that self-image and physical appearance have a direct impact on the patient’s self-esteem and in turns hinders the recovery process.  The organization offers over 14,500 group workshops nationwide in more than 3,000 locations where beauty professional volunteers teach women beauty techniques to help them manage the appearance-related side effects.

Other institutions like DNI International offer reconstructive cosmetic products and services available to cancer patients at select institutions.   David Nicholas and David Miranowicz, co-presidents of DNI International, empathize with patients on how a decreased physical appearance is directly linked to a lower quality of life.   “Chemotherapy can yellow the skin; they often lose their eyebrows and eyelashes, and radiation burns the skin.  But with some education, we can empower them to soften the effects of those treatments, and they can feel more like themselves again…which makes them feel better.”  DNI’s user-friendly reconstructive cosmetic makeup products are available to cancer patients in the Rowley, MA and Massachusetts General Hospital-Oncology Unit.

Social and Emotional Side Effects

Newly diagnosed cancer patients and families may also experience role changes.  Cancer patients, who were originally extremely independent pre-cancer, will now inevitably become more dependent on their family and loved ones.  Patients are also likely to experience feelings of anxiety, depression, frustration, and hopelessness.  Cancer survivors like Bill Gasperson, stress the importance of joining support groups and that the larger the patient’s support group is the better.   Support groups offer several benefits, some which include:

1. Learning tips and resources through sharing among peers
2. Connecting with cancer survivors and coaches for strength and encouragement
3. Finding inspiration through patient empowerment
4. Identifying the right questions across various stages in the disease
5. Companionship – rediscovering the ability to laugh despite the disease

A strong social support network most importantly provides the patient with the emotional support to help battle the hurdles of this terrible disease.  Cancer survivors have stressed that perhaps the most important emotional support is needed when they experienced disease recurrence.

We hope this post was helpful and would love to hear some of your own lessons learned.

“Courage is resistance to fear, mastery of fear-not absence of fear” – Mark Twain

There’s no better person who understands the quality of life challenges and needs of a cancer patient than their personal caregiver.  Caregivers are often the patient’s beacon of hope and critical support network in their struggle against cancer. In this post, we will highlight some of the key responsibilities that come with being a new caregiver for a cancer patient.

Open Communication

In the beginning and throughout the duration of the patient’s recovery against cancer, it’s extremely important that both the patient and caregiver are open and honest about their needs, schedules, and responsibilities.  Open communication is essential in laying the foundation of trust in this new relationship.

In addition to being open, it’s also important for the caregiver to maintain a level of composure around the patient.  Normally, the cancer patient is already in an emotionally fragile state from the condition – experiencing feelings of frustration, depression, loneliness, anger, and resentment.  Therefore, as a caregiver, careful communication is important not only to accurately understand the patient’s needs but also to be sensitive to his or her feelings.

Treatment Planning and Decision-Making

Perhaps, one of the most challenging initial tasks as a new caregiver is learning the complex oncology healthcare system.  New caregivers should engage oncologists, nurses and other healthcare professionals with questions so that they can help patients make the right decisions resulting in the best possible care for the patient.  Common newly diagnosed cancer patient questions include treatment effectiveness and side effects, medication reimbursement, availability of clinical trials and alternative therapy options, supplemental treatment options to manage pain, and much more.  Some recommended tips from the American Cancer Society and other leading cancer advocacy groups include the following:

• Stay organized with all medical tests, notes and clinical treatment
• Constantly keeping a list of questions
• Actively seeking out second-opinions from various doctors
• Seeking help from nurses, cancer advocacy organizations
• Joining and participating in support groups
• Actively engaging your HMO on reimbursement options

Financial Concerns

The clinical tests, several rounds of treatment, and other patient care services will quickly run up the patient’s healthcare bill and insurance may only cover a fraction of these expenses.  Therefore, it’s important to make sure that the finances are managed closely.  Experts have suggested employee assistance healthcare programs and applications to foundations for financial support.  Some nurses have cited that though there are a good handful of financial resources available for patients, the challenge is that funding is always limited.  Patients and caregivers need to submit their applications for financial support as soon as possible to maximize the opportunities for aid.  Patients and nurses have cited that The Patient Advocate Foundation has been one of the most helpful and caring foundations in helping patients with insurance access issues, assisting with managing medical debt and providing aid where possible via the PAF Co-Pay Relief (CPR) program.  Other co-pay / out of pocket relief and prescription assistance programs include: Chronic Disease Fund, Healthwell Foundation, Patient Access Network Foundation, Leukemia & Lymphoma Society, CancerCare, and Sarcoma Alliance.

Emotional Support

Though local support groups are available to cancer patients, as a caregiver, you are the patient’s primary support network whom they rely on for hope, strength and inspiration as they battle this condition.  Therefore, as a caregiver, it’s important to take care of yourself first, so that you can take care of the patient.  If you are feeling depressed or overwhelmed, take a break.  Reach out to other family members to help out with the providing care so that you can reset and recharge.  The primary caregiver’s role is an extremely demanding one and can place a heavy burden on anyone.  However, the patient needs you to take care of yourself so that you can provide the energy, focus and strength necessary for their cancer care.

Home Care Services

Home care services are a common responsibility for caregivers of patients struggling with severe chronic conditions.  “Home care” responsibilities include: meal preparation, housekeeping, bathroom assistance, grocery shopping, personal finance management, and transportation to doctor appointments.

However, not all family members are able to devote 100% of their time and energy to these activities.  Fortunately, there are independent local home care agencies available to help provide the necessary care for the patient in the comfort of their own home.  Typically, these services may not be covered under private insurance companies, but financial assistance may be available from a variety of public and private sources such as the US Department of Veterans Affairs (VA), Medicare, Medicaid, and the Older Americans Act.  American Cancer Society’s overview of questions to ask when selecting a Home Care Agency is a great beginning read.

We are continuously amazed by the dedication, perseverance and strength of our caregiver community.  It’s no wonder they are the patient’s trusted companion.

Related Articles:

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Despite the numerous medical treatments that are required for cancer patients, a strong emotional support network is often equally as important for cancer patients to improve their survivorship.   In this post, we review some of the current services and qualities for support groups that are focused on addressing emotional quality of life issues.

There are several types of emotional support systems that are available to help cancer patients and loved ones deal with feelings of loneliness, depression, anxiety, frustration and hopelessness.  The various types of emotional support systems include live and remote support resources.

Live Support Resources:

• Friends and Family Support
• Formal Support Networks, Nurse Navigator Programs
• Educational workshops, expressive arts programs
• Religious Support Groups
• Meditation, Spiritual Support programs

Remote Support Resources:

• Telephone counseling services
• Online chat groups and discussion forum communities
• Carepages

These resources and services can often be found collectively at medium to large cancer centers that offer a comprehensive care model in helping patients manage all aspects of their journey with cancer.  Groups like San Diego’s SHARP Cancer Treatment Center, Longmont United Hospital, Griffin Hospital and the Northern Westchester Hospital drive patient-centric care models to really help patients and loved ones address all aspects of cancer treatment with the emotional issues at the core.

Below, Dorothy, a YourShoes 24/7 Peer Counselor describes how telephone counseling services as a line of hope for cancer patients:

Strong mental and emotional care results in positive thinking and an improved survivorship outlook  for cancer patients.  If you or your loved one is currently struggling with the emotional effects of cancer, participate in a support group to help improve your quality of life.

Related Blogs:

• Scanitis: When Cancer Screenings Fill You With Dread
• Cancer Support Tips for Friends and Family
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For cancer patients who require long-term care and are homebound, often times oncology hospitals and practices provide valuable home health nursing services while allowing the patient to be in the comfort of their own homes.  In this post, we will highlight a few home health nursing services and agencies available to cancer patients and their caregivers.

Many of these home health nursing services provide skilled and certified RN support which include physical therapy, speech pathology, nutritional counseling, medication management, pain management and other services targeted on daily personal needs.  Long-term care cancer patients often struggle with additional challenges that affect their physical and social well-being.  In fact, some patients would actually prefer to relieve some of the burden and responsibilities from their primary caregivers (i.e. immediate family members, loved ones) and thus, home health nursing services become an attractive option.

Below, we highlight a few home health service providers which genuinely recognize care for the patient:

Southeast Home Health and Southeast Hospice: provides a range of key medical services for typically late-stage cancer patients by certified RNs which range from physical therapy, speech pathology, nutritional counseling.  Southeast Home Health and Southeast Hospice services the Cape, Bollinger, Perry, Scott and portions of Stoddard, New Madrid and Mississippi counties.

Caring Way: provides skilled nursing and non-medical care to end-stage cancer patients in the Maine and New Hampshire regional areas; primary services include medication management, meal preparation, property management, transportation, personal assistance and grocery shopping.  Caring Way’s values on patient-centered care around lifestyle and quality of life is really inspiring.

Compassionate Care Home Health: provides Michigan-regional homemaker services, companionship, medication reminders, bathing assistance and other live-in care services.  Their focus and willingness to provide customized care whether medical or non-medical provides great value Michigan-area patients.  They also provide a wide-range of personal care services which include: vitals (blood pressure), shaving, bathing, skin care, oral care, personal hygiene, medication reminder and light exercise.

Brooklyn Hospital Center’s Home Health: provides comprehensive and compassionate care services for palliative and cancer care home services.  They recognize that receiving medical and non-medical care in the comfort of the patient’s own home may be preferred.  In fact, even patients who are not hospitalized qualify for these services.   so patients can recuperate with their loves ones in their home.  The services are delivered through skilled certified nurses to help with the recovery process in helping patients return to an “optimal” level of functioning.

Geisinger Cancer Institute’s Home Care Services: provide cancer patients with skilled nursing, home aids, physical therapy and other social services in the Central and Eastern Pennsylvania area.  Geisinger really extends their services to patients to aim to be a full shop of care services for patients.  They boast not just home care services but also hospice, cosmetics, emotional and spiritual counseling, and palliative medicine management services.

We’re grateful for the support services these groups provide and hope more providers recognize the importance of extending cancer care beyond the clinical.