Prior to 1946, cancer was a surgical disease. If a cancer could not be completely removed during an operation, then it was incurable. But in 1946, two Yale University pharmacologists, Dr. Louis Goodman and Dr. Alfred Gilman, published their findings that by treating a patient dying of lymphoma with nitrogen mustard, the patient’s tumors shrank. The impetus for their experiment was the observation during World War I that soldiers who survived mustard gas attacks developed low white blood cell counts and were susceptible to infections. Goodman and Gilman hypothesized that the same chemical used in gas warfare could treat white blood cell malignancies. Thus, the era of cancer chemotherapy was born.
When I was a medical student 40 years ago, chemotherapy rarely cured anyone – it merely postponed dying from cancer by a few months. However, since then, the number of chemotherapy drugs has dramatically increased. Now, we also have immunotherapies, driver-directed therapies, and hormonal therapies to treat cancers. These treatments are much more effective than early chemotherapies and can not only offer the hope of long-term suppression of cancer but can also often cure cancer. And each of these treatments has its own set of short-term and long-term complications. Currently, there are 18.1 million cancer survivors in the United States and that number is expected to grow to 22.5 million over the next ten years. Of those cancer survivors, 16.3 million will live for more than 5 years. The good news is that we now have more people surviving cancer than ever before but the bad news is that we now have more people living with the side effects of cancer treatment than ever before.
Historically, oncologists were in the business of treating cancer. Once cancer was cured, the oncologist discharged the patient to the care of their primary care physician so that the oncologist could focus on their next patient with newly diagnosed cancer. But primary care physicians are largely untrained in managing the medical complications attendant to cancer treatment. As a result, we have an unfilled gap in medical care – patients in a no-man’s land of medical problems that their primary care physician is unfamiliar with and that their oncologist often places a lower priority on. This unfilled gap is cancer survivorship.
There are four major components to cancer survivorship care:
- Surveillance. Cancer can recur and early detection of recurrence leads to early treatment of recurrence which in turn leads to the best long-term survival. However, the surveillance monitoring guidelines frequently change and each type of cancer requires different radiographic or blood test monitoring.
- Prevention. Cancer treatments can cause medical conditions by themselves but they can also make patients more susceptible to other medical problems. Preventive care can often avert these problems.
- Treatment side effects. Every cancer therapy has its own set of side effects and if untreated, these side effects can often be debilitating.
- Coordination of care. The management of cancer survivors can be complicated, often requiring multiple specialists simultaneously.
A cancer survivorship clinic should ideally incorporate all four of these components.
Cancer screening falls squarely in the purview of the primary care physician. Family physicians and general internists are accustomed to being responsible for ordering routine screening mammograms, pap smears, and colonoscopies. But once a patient is treated for a cancer, the guidelines for those tests change and primary care physicians are often uncertain what tests to order and how often to order them. Current guidelines include the following:
- Breast cancer. Survivors should have an office visit with history and physical examination every 3-6 months for the first three years, every 6-12 months for the next two years, and annually thereafter. A diagnostic mammogram should be performed annually for the first 3-5 years and then a screening mammogram performed annually thereafter. All women with breast cancer should be offered genetic testing and genetic counseling.
- Prostate cancer. Prostate cancer is unique among cancers because there is a wide spectrum of severity. Some prostate cancers grow so slowly that they do not require any treatment whereas others can rapidly metastasize and be fatal. The PSA (prostate-specific antigen) blood test is the mainstay of prostate cancer surveillance. For patients with localized disease, it should be tested every 6-12 months for the first 5 years and then annually thereafter. For patients with more extensive disease, it should be tested every 3-6 months.
- Colon cancer. For patients with stage I disease, a colonoscopy should be performed 1 year after surgery and then every 3 years thereafter. Patients with stage II or III disease should also have regular colonoscopy but should additionally have a history and physical examination plus a CEA blood test every 3-6 months as well as a CT scan of the chest/abdomen/pelvis every 6-12 months.
- Lung cancer. The chest CT is the mainstay of surveillance for lung cancer survivors and, along with a history & physical examination, should be performed every 6 months for the first two years and then annually thereafter. After five years, changing to a low-dose screening annual chest CT can be considered.
- Other cancers. There are different surveillance recommendations for melanoma, testicular cancer, lymphoma, thyroid cancer, and brain cancer. The surveillance for every cancer is unique and may require interval history and physical examinations, blood testing, and/or radiographic imaging.
Preventive medicine recommendations are fairly similar for all cancer survivors. Healthy living strategies for one cancer are generally the same for other cancers. A healthy diet, weight loss if overweight, regular exercise, and appropriate vaccinations are appropriate for cancer survivors as well as for the general population. Because many cancer survivors may have lingering immunity impairment from chemotherapy, vaccinations are especially important.
Smoking cessation is an essential component of cancer survivorship. Approximately 12-15% of cancer survivors are current smokers. The patient cured of their lung cancer by lobectomy will be at increased risk of a second lung cancer if cigarette smoking continues. Smoking cessation can also help prevent laryngeal cancer, bladder cancer, pancreatic cancer, kidney cancer, esophageal cancer, and others,
As more and more cancers are found to have genetic contributions, genetic testing has become routine in oncology. Ideally, genetic testing be done after genetic counseling but with the widespread availability of gene testing, any provider can order these tests. At the least, referral to a genetic counselor should be made for all patients with abnormal cancer-related genes. Not only can this improve early diagnosis and prevention of other cancers in the patient but it can also improve cancer diagnosis and prevention in susceptible family members.
Treatment side effects
Each kind of cancer has its own specific treatment. And each treatment has its own specific side effects. As the number of cancer treatments has increased exponentially in the past decades, so have the number of treatment side effects. The result is that cancer survivorship has almost become a sub-specialty of its own. To a degree, this has been met by other subspecialties. For example, we now have “onco-nephrologists” who are kidney specialists who sub-specialize in managing the renal complications of cancer treatments. We have “onco-pulmonologists who sub-specialize in pulmonary complications of cancer treatments. Similarly with cardiology, infectious disease, and gastroenterology. But these sub-specialists are few in number and only located in large, tertiary care, academic medical centers. Moreover, their expertise is organ-specific and frequently, cancer survivors have complications affecting more than one organ or affect a part of the body that does not fall under the expertise of the nephrologist, pulmonologist, or cardiologist. Here are some of the most common medical conditions seen in cancer survivors:
- Osteoporosis. Many cancer treatments can increase the risk of osteoporosis including chemotherapy-induced premature menopause, use of aromatase inhibitors for breast cancer, use of corticosteroids, and use of anti-androgen prostate treatments. Baseline bone density tests at treatment onset followed by regular interval bone density tests should be offered to patients receiving these treatments. Early treatment of osteopenia and osteoporosis can prevent subsequent bone fragility fractures.
- Fatigue. Cancer survivors can have fatigue for many different reasons including side effects of radiation therapy, surgery, or medications. However, other common causes of fatigue should not be overlooked including thyroid dysfunction, sleep disorders, anemia, depression, and heart disease.
- Peripheral neuropathy. Many chemotherapy drugs can cause damage to the peripheral nerves. Some of the more common drugs include vincristine, cisplatin, oxaliplatin, bortezomib, and paclitaxel. These are usually “stocking-glove” distribution sensory neuropathies. However, drugs such as vincristine can cause intestinal autonomic neuropathy resulting in constipation. In addition, radiation therapy can result in peripheral neuropathy from injury to nerves within the radiation ports. Peripheral neuropathy management in cancer survivors may include physical therapy, medications (such as duloxetine), and injury prevention (such as daily foot inspections).
- Pain. Cancer-related pain is often managed by palliative medicine specialists but cancer survivors often have chronic pain, even if their cancer is cured. This often results in patients transferring care from the palliative medicine specialist to a pain management specialist. As with other causes of chronic pain, multimodality comprehensive pain management is considerably more effective than relying solely on pain medications such as opioids.
- Cardiotoxicity. Patients receiving radiation therapy to the chest region are susceptible to developing pericarditis, cardiomyopathy, coronary artery disease, and valvular heart disease. Anthracycline drugs (such as doxorubicin and daunorubicin), fluorouracil, and trastuzumab can cause heart failure and may require serial cardiac ultrasound testing. Many other chemotherapy drugs can also cause heart disease. The management of drug-induced heart failure is similar to the management of other causes of heart failure.
- Pulmonary toxicity. Chest radiation and many chemotherapy drugs can cause interstitial lung disease. Bleomycin is particularly notable because it can cause interstitial lung disease with respiratory failure years after treatment if a patient is inadvertently exposed to high oxygen concentrations, for example, while undergoing anesthesia. Driver-directed cancer treatments, such as tyrosine kinase inhibitors, can cause lung damage. Checkpoint inhibitors used as immunotherapy for cancer can also cause pneumonitis. In many cases, pulmonary toxicity can be minimized by early diagnosis and treatment with corticosteroids but patients may require bronchoscopy to exclude infection.
- Gastrointestinal toxicity. Diarrhea is common with chemotherapy. Pelvic radiation can additionally result in diarrhea or incontinence. Checkpoint inhibitors can cause hepatotoxicity and colitis. In some cases, corticosteroids can relieve symptoms but patients require microbiologic testing of the stool to first exclude infection.
- Renal toxicity. The kidney can suffer many kinds of injury from cancer treatment. Chemotherapies, checkpoint inhibitors, and driver-directed therapies can all directly cause acute kidney injury. Electrolyte disorders of potassium, sodium, phosphorus, and calcium can result from both cancer treatments or from the underlying cancer. In addition, paraneoplastic glomerular disorders, glomerular injury from tumor lysis syndrome, and glomerular injury from monoclonal gammopathies can occur.
- Sexual health needs. Sexual dysfunction can result from post-surgical changes, chemotherapy, hormonal therapy, radiation therapy, and premature menopause. Many cancer survivors are hesitant to initiate discussion about sexual dysfunction so it is important that providers create an environment where patients are comfortable discussing sexual health.
- Fear of recurrence. About half of cancer survivors have mild to moderate fear or worry that their cancer will come back and 7% of survivors have these fears to a severe degree. This carcinophobia can be emotionally consuming. In mild cases, support groups can be helpful. More severe cases benefit by cognitive behavioral therapy. Other psychosocial issues such as depression, anxiety, and post-traumatic stress disorder are also common.
- Financial insecurity. It is expensive to have cancer. Frequent office visits, costly medications, costly tests, and unexpected surgeries can be financially devastating, even for those patients with health insurance. In addition, reduced income for both patients and caregivers results from necessary time off work. Hospital financial counselors and social service staff can often be helpful.
Coordination of care
With care simultaneously being provided by physicians from many different specialities, cancer survivors often find themselves asking: “Who is in charge of my medical care?”, especially after cancer treatment has finished. Coordination between the patient’s medical oncologist, surgeon, radiation oncologist, internal medicine specialists, social worker, psychologist, genetic counselor, and neurologist can be challenging. Although primary care physicians are adept at coordination of care for patients with chronic disease, the unique multidisciplinary care needs of cancer survivors can often be overwhelming for the primary care office. Coordination of care can be the responsibility of the medical oncologist in some situations, the primary care physician in some situations, or patient navigators in others. The important thing is that every cancer survivor knows who is coordinating their care and that all of the various providers involved in that patient’s care also know who coordinating care. This is particularly essential to ensure that recommended tests and medication changes actually get done.
Cancer survivorship clinics
So, does your hospital need a cancer survivorship clinic? And if so, who should run it? In some hospitals, cancer survivorship is the purview of the medical oncologist. But the medical needs of cancer survivors can last for years or decades after the cancer is cured and many oncologists simply do not have the bandwidth to meed these needs for dozens or hundreds of cancer survivors while still meeting the needs of patients being actively treated for their cancer. Some primary are providers are able to assume the oversight and coordination of care for cancer survivors. But cancer survivorship care has become fairly specialized with the result that many primary care providers lack the training or experience in the unique chronic care of the cancer survivor.
A solution in some communities is the dedicated cancer survivorship clinic. This could be staffed by an oncologist, a general internist with a special interest in cancer survivorship, a physical medicine specialist, or even an advanced practice provider with training in the care of cancer survivors. Although large cancer specialty hospitals have dedicated survivorship clinics, this is an unmet medical need in most community hospitals.
It is time that medical directors and hospital administrators at community hospitals take responsibility for creating cancer survivorship clinics. One out of every 17 Americans is a cancer survivor and these cancer survivors are often hiding in plain sight in every small community in the United States. A community does not need to have a tertiary care oncology practice in order to support a cancer survivorship clinic. Indeed, such a clinic can be overseen by a general internist or a family medicine physician.
As cancer treatments continue to advance, so do the needs of cancer survivors. It is time that we bring survivorship clinics to our community hospitals.
December 27, 2022