action to cure kidney cancer: managing my cancer

Taking Charge of Kidney CancerManaging My Cancer

Second of a Series of Four Patient Guides

Published by Action to Cure Kidney Cancer

About ACKC

Action to Cure Kidney Cancer (ACKC) is a grassroots group of kidney cancer survivors and family/caregivers who estab-lished a new not-for-profit health-advocacy organization in 2003. Our mission is to educate the public about kidney cancer, empower kidney cancer patients and their families, endow grants, and lobby for research towards finding a cure.

Our “Taking Charge” Guides

ACKC’s set of four guides provides kidney patients and their caregivers with the information they need to take a proactive role in their health care and their lives. Guide 1 Understanding My Disease is written for the newly diagnosed patient. Guide 2 Managing My Cancer is about the care and treatment of kidney cancer patients with metastatic disease. Guide 3 Caring for My Caregiver is intended for the people in your life who are helping you. Guide 4 When Treatment Ends is designed for both patients and their loved ones.

© 2013 Action to Cure Kidney Cancer

Managing My Cancer

P A T I E N T G U I D E 2

Managing My Cancer

Introduction to Advanced Kidney Cancer 5

After Nephrectomy or Tumor Ablation 5

Renal Cell Carcinoma Staging 6

Recovery After Nephrectomy 9

Building My Medical Team 9

Charting My Medical Team 10

Treatments for Metastatic Disease 12

Surgical Treatments 13

Medical Treatments 19

Promising Drugs in Clinical Trials 23

Stem Cell Transplants and Vaccines 24

Which Therapy Should I Begin With 24

Drug Toxicity or Side Effects of Treatment 25

Help with Paying for Drugs 29

Clinical Trials 30

Patient Empowerment 32

Be Your Own Advocate 32

Record Keeping 34

Staying Well 34

Taking Charge of Kidney Cancer

The Human Urinary System

Kidney Functions. As the body’s main filtering system, the kidneys control fluid balance, regulate electrolytes, help regulate blood pressure, and prevent acid buildup. The kidneys also secrete erythropoietin, a hormone which stimulates the bone marrow to produce red blood cells.

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Managing My Cancer

Introduction to Advanced Kidney CancerIf you or your loved one has been diagnosed with metastatic renal cell carcinoma (RCC), this guide is for you. While this diag-nosis is distressing, there are still many reasons to be hopeful. You have survived the initial diagnosis of kidney cancer, the battery of tests, and the emotional turmoil for you and your family. You may already have survived the removal of your primary tumor.

As noted in Guide 1, Understanding My Disease, early stage cancer has a high chance of five-year survival (the benchmark for can-cer survival) and even cure. But even those who are originally di-agnosed as having advanced disease have reason to hope. Today there is a wide range of treatments for metastatic kidney cancer that are helping to extend progression-free survival for much lon-ger periods.

In this guide you will learn how to navigate the next steps in the medical management of your disease.

After Nephrectomy or Tumor AblationAfter the tumor has been removed, the surgeon sends specimens of the tumor tissue to the pathologist who determines if the margins are clear (if the tumor was destroyed in place by ablation or embolization, biopsy samples will be sent to the pathologist). She also assesses the pathologic stage and the grade of the tumor. The stage of the cancer includes the size of the tumor, any lymph node involvement, and any metastases to other parts of the body. Staging the tumor helps predict the prognosis and survival. The grade is the pathologist’s assessment of how aggressive the cells appear under the microscope. The higher the stage and grade, the worse the prognosis.

Today, doctors use a detailed staging system developed by the American Joint Committee on Cancer (AJCC) called TNM, where T is the primary tumor, N is Node (lymph node) and M is metas-tasis. Please see diagrams on the following pages.

Metastatic Disease: The cancer has spread beyond the kidney.

Pathologist: A physician who identifies diseases by studying cells and tissue under a microscope.

Margins: The edges of the tumor. If they are clear, the entire tumor has been removed.

Lymph Nodes: Tiny infection-fighting glands located throughout the body.


Renal Cell Carcinoma TNM Staging* (see Guide 1 for kidney physiology)According to the TNM staging system: T = tumor N = Node (lymph node) M = metastasis

T1a — Tumor 4 cm (1.6”) or less in greatest dimension, limited to the kidney

T2a—Tumor more than 7 cm but less than or equal to 10 cm (3.9”) in greatest dimension, limited to the kidney

T1b—Tumor more than 4 cm but not more than 7 cm (2.8”), in greatest dimension, limited to the kidney

T2b—Tumor more than 10 cm, limited to the kidney

T1 Tumor 7 centimeters (cm) or less in greatest dimension, limited to the kidney

T2 Tumor more than 7 centimeters (cm) in greatest dimension, limited to the kidney

* Descriptions used with the permission of the American Joint Committee on Cancer (AJCC), Chicago, Illinois. The original source for this material is the AJCC Cancer Staging Handbook, Seventh Edition (2010) published by Springer Science and Business Media LLC, www.springerlink.com.

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Managing My Cancer

T3b—Tumor grossly extends into the vena cava below the diaphragm

T3c—Tumor grossly extends into the vena cava above the diaphragm or invades the wall of the vena cava

Renal Cell Carcinoma TNM Staging* (see Guide 1 for kidney physiology)According to the TNM staging system: T = tumor N = Node (lymph node) M = metastasis

T3 Tumor extends into major veins or perinephric tissues but not into the ipsilateral adrenal gland and not beyond Gerota’s fascia

T3a1—Tumor invades perirenal and/or renal sinus fat but not beyond Gerota’s fascia

T3a2—Tumor grossly extends into the renal vein or its segmental (muscle containing) branches

* Descriptions used with the permission of the American Joint Committee on Cancer (AJCC), Chicago, Illinois. The original source for this material is the AJCC Cancer Staging Handbook, Seventh Edition (2010) published by Springer Science and Business Media LLC, www.springerlink.com.

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Renal Cell Carcinoma TNM Staging* (see Guide 1 for kidney physiology)According to the TNM staging system: T = tumor N = node (lymph node) M = metastasis

Anatomic Stages Histologic GradeStage I T1 N0 M0

Stage II T2 N0 M0

Stage III T1 or T2 N1 M0 T3 N0 or N1 M0

Stage IV T4 any N M0 any T any N M1

The grades run from 1 to 4 depending on the appearance of the tumor cells. Normal cells are well formed (differentiated). The less differentiated the cell, the higher the grade.

G1 Well Differentiated

G2 Moderately Differentiated

G3 Poorly Differentiated

G4 Undifferentiated

NX Regional lymph nodes cannot be assessed

N0 No regional lymph node metastasis

N1 Metastasis in regional lymph node(s)

M0 No distant metastasis

M1 Distant metastasis

Survival RatesFive -Year Relative Survival Rates (%) by Stage at Diagnosis 2001-2007**

All Stages 70%

Local 91%

Regional 63%

Distant 11%

**Source: American Cancer Society Cancer Facts and Figures 2012. Note: Although these are the latest data available, these figures were gathered before targeted therapies came into widespread use. Survival times for metastatic patients are better now.

T4 Tumor invades beyond Gerota’s fascia or into the adrenal gland

T4a—Tumor invades beyond Gerota’s fascia T4b—Tumor extends into the ipsilateral adrenal gland

*Descriptions used with the permission of the American Joint Committee on Cancer (AJCC), Chicago, Illinois. The original source for this material is the AJCC Cancer Staging Handbook, Seventh Edition (2010) published by Springer Science and Business Media LLC, www.springerlink.com.

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Source: American Joint Committee on Cancer (AJCC), see below.

Source: American Joint Committee on Cancer (AJCC), see below.

Managing My Cancer

Recovery After NephrectomyIf all the cancer has been removed, and there is no sign of spread, usually no further treatment is warranted. It takes on average four to six weeks to heal from surgery and often several months to fully recover.

There is no standard follow-up plan. Your individualized plan will be based on a number of factors including the size of the primary tumor, the extent of spread outside the kidney, the tumor histol-ogy, and the relative risk of recurrence. One set of guidelines that you and your caregiver might consider in discussing follow-up is that of the National Comprehensive Cancer Network (NCCN), a panel of leading oncologists. They recommend that patients with no evidence of disease be seen every six months for the first two years after surgery and annually after that. Each visit should in-clude a history, physical examination, and comprehensive labora-tory tests such as blood urea nitrogen (BUN) and serum creatine. They also recommend abdominal and chest imaging about 2 to 6 months after surgery and as clinically indicated thereafter. Chest x-ray and ultrasound may also be performed to assess patients, especially those with small tumors and low risk of recurrence. You can estimate your annual x-ray exposure by going to http://tinyurl.com/644flxq.

Clinical trials are now going on to determine if adjuvant therapy is helpful for kidney cancer as has been shown with cancers of the breast and colon.

Building My Medical TeamIf your cancer has spread beyond the kidney, it is now a system-ic disease that requires an interdisciplinary team of medical and health care specialists. This may include a urologic oncologist — a surgeon who specializes in urinary tract cancers; a medical oncologist — a specialist in the diagnosis and medical treatment of cancer with extensive experience in kidney cancer; an inter-ventional radiologist — a specialist in using nonsurgical means of destroying tumor tissue; a radiation oncologist — a specialist

What to Ask About Follow-Up?

What is my risk of recurrence?How often should I be seen?What type of imaging will I need and where—lung, abdomen, pelvis?How often will these tests be done?Should the follow-up be done by a urologist or an oncologist?

Adjuvant Therapy

Therapy used to prevent a recurrence of the disease.

CT Scan versus X-ray

Some doctors recommend CT scans instead of x-rays due to their accuracy. However, the former can add 100 to 150 times the amount of radiation exposure.


in the use of radiation in the treatment of metastatic kidney can-cer; and a nephrologist — a kidney specialist who monitors the health of your remaining kidney.

Other members of your team may be your primary care physician, who monitors your general health, an oncology nurse or nurse practitioner, a palliative care doctor or nurse, and a registered dietician. If you require surgery for metastases to other parts of the body, you will also want a first-rate surgeon with extensive experi-ence in treating metastatic cancer in the affected tissue or organ.

Often the team leader is the medical oncologist who coordinates your health care with the other members of your team. You and your caregiver have to make sure that someone is the team leader, coordinating your care with other practitioners and, if there is no one, you should encourage someone to do it, whether it’s the oncologist or primary care physician, or take on the job yourself. To find an oncologist, you should check out a top cancer center, especially if one is conveniently located. The National Cancer In-stitute has listed 25 elite cancer centers around the country distin-guished by their scientific excellence and ability to integrate care. Go to http://tinyurl.com/bbwo95h. Check with the individual center that interests you to make certain that there are specialists

Palliative Care

“Palliative care is not end-of-life care; it is the art of easing the discomfort of disease symptoms and treatment side effects — regardless of the stage of disease. A good oncology team should always include a palliative care nurse as part of its makeup.”— Chris Battle, The Kidney Cancer Chronicles (blog)

Charting My Medical Team

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Managing My Cancer

in kidney cancer on staff. The alternative is a community oncolo-gist. Some of the larger groups may have a doctor who specializes in kidney cancer (as well as other urologic cancers). The relevant criterion is to choose a doctor who sees more than a handful of kidney cancer cases each year so that the oncologist will be fa-miliar with the available therapies and their side effects and what type of treatment may be appropriate in your particular case, e.g., medical, surgical, radiological, or otherwise.

Other search bases are Association of Cancer Online Resources at www.acor.org, where you can join a kidney cancer listserv and ask its members for recommendations; the American Society of Clinical Oncology (ASCO), which provides an online list of on-cologists at http://tinyurl.com/c6l6pgv; and the American College of Surgeons (ACS) http://tinyurl.com/d4kuqea. (See also How to Choose My Doctor in Guide 1). You should interview more than one oncologist to learn what treatment options they recommend. The more advanced the stage or the rarer the cancer you have, the more imperative it is that you seek out people who are experts in that particular area, even if you have to travel to get to them.

Once you have chosen your health care providers, be sure to get all their contact information, including phone number, emergency number, email, and any additional offices they may use.


Treatments for Metastatic DiseaseApproximately 30% of kidney cancer patients are metastatic at the time of their initial diagnosis. For those with localized disease, a variable percentage of them will develop metastases after diagno-sis so that up to 50% of those diagnosed with kidney cancer will experience metastatic disease and will need to know what their treatment options are.

There are four broad categories of treatment that you should con-sider if you are diagnosed with metastasis: medical, surgical, ra-diation, and interventional radiological procedures. The type of treatment most suitable for you will depend on several factors in-cluding: whether your metastasis is diagnosed within the first year of your disease or later; the location(s) of the metastasis; and the number, size, and spread of the metastatic lesions (metastases are often referred to as mets, lesions, nodules, or even spots).

If you are faced with several metastatic nodules that are spread throughout your body, then systemic medical treatment is most

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Managing My Cancer

likely your best choice. On the other hand, if you develop one or two mets in a single site, say a year or two after you had a nephrec-tomy, and the rest of your body is clear, then you have oligomet-astatic disease, or cancer with limited metastatic burden, which happens with indolent or slow growing cancer. In that case, you may want to choose a procedure that is limited to removing the cancerous growth rather than going on continuous medical treat-ment with its associated side effects.

It is important that you arm yourself with the various treatment options before discussing them with your doctor, who will prob-ably be an oncologist. Oncologists do not perform surgery, radia-tion or radiological interventions (ablations). However, they do prescribe medicines and therefore have an inclination to recom-mend medical treatment. But, for oligometastatic disease, for ex-ample, other treatments may be preferable. You may want your oncologist to refer you to another specialist for localized treatment if such treatment is feasible for your condition. The various treat-ment options are discussed below. Since medical treatment is sys-temic and mostly continuous, it is covered last.

Surgical TreatmentsAfter the kidney has been removed, patients with localized tumors who are Stage I, II, or III have a 20 to 30% chance of having a re-currence within one to two years. Most recurrences occur within the first three years. The lungs are the most common distant site, affecting 50 to 60% of metastatic patients. If you are considering surgery for a metastasis, as part of your medical team you will need a surgeon with extensive experience in the affected area—a thoracic surgeon for the lung, an orthopedic surgeon for bone, a urologist for genitourinary tumors and so on.

Metastasectomy has been helpful for patients with RCC whose cancer has spread to the lungs, lymph nodes, liver, bone, and brain. The best candidates for this approach are people who have metastasis to a single site, especially in the lungs, however, even patients with multiple metastatic sites have benefited from me-tastasectomy. For example, in a 2011 retrospective study done at

“The ideal candidate for lung mets surgery is someone with just a few nodules that can easily be removed, destroying as little lung tissue as possible. It is also important that the surgeon work in conjunction with an oncolo-gist because sometimes a drug shrinks the tumor completely and surgery is not needed. Finally, before operating, there must be a disease-free interval to make certain that the cancer is not spreading around the body and that the surgeon has a chance to alter the course of the disease.”— Dr. Raja Flores, chief of the division of thoracic surgery at The Mount Sinai Medical Center in New York

Metastasectomy: Removal of a metastasis by surgical or other means.


the Mayo Clinic, patients who had complete surgical resection of lung-only multiple metastases had a 5-year cancer specific survival rate of 73.6% versus only 19% without complete resec-tion. Even patients who underwent incomplete surgical resection benefited. The 5-year survival rates for all sites were 45%, 23%, and 8%, for patients undergoing complete resection, incomplete resection, and no resection, respectively. The only patients who did not benefit from complete resection were those who presented initially (shortly after diagnosis) with metastatic RCC and mul-tiple metastases.

Some researchers believe that combining metastasectomy with targeted medical therapies would have even a greater impact on overall survival in metastatic patients, however, this can only be verified through a prospective trial.

For bone metastases, surgery is an option to be considered, es-pecially if there is a fracture or impending fracture of a weight supporting bone such as the humerus (arm bone), hip bone, pel-vis, or femur (thigh bone). An orthopedic surgeon can remove the metastasis and, if necessary, reconstruct the bone by inserting a supporting rod. As metastatic kidney cancer patients are surviving longer, more aggressive surgery should be considered in order to improve quality of life.

RADIATION ONCOLOGY

With the exception of palliative care, radiation has long been con-sidered to be less effective in kidney cancer than in other cancers. However, with the development of new techniques and devices, radiation therapy has emerged as an effective tool to treat brain, bone and metastases in other parts of the body, providing the le-sions are small enough. Radiation is not curative, but it can extend life as well as increase the quality of life. The following is an over-view of various radiation techniques.

Radiation terminology can often be confusing and at times, over-lapping. External beam radiation therapy (EBRT) refers to single or multiple radiation beams that originate from a source outside of the human body, primarily aimed at the tumor.

“It’s important for patients with metastatic RCC to have a discussion with their physician regarding whether they would be a candidate for resection of metastatic disease given that, in some patients, the resection of metastatic disease has been associated with long-term survival outcomes.” —Sr. Stephen Boorjian, Depart-ment of Urology, Mayo Clinic

Resection: The removal of all or part of a body organ or other tissue.

Managing My Cancer

Internal radiation therapy or brachytherapy means the source of the radiation is physically placed within the body. While this lat-ter method is not suitable to treat kidney cancer, it is often used in prostate cancer.

It is also important to distinguish between conventional fraction-ated radiation and stereotactic radiation therapy. The former is external beam radiation administered in small doses over a pro-tracted period of time that adds up to a large total dose. The lat-ter, stereotactic radiation therapy (SRT), refers to a novel radiation technique where large doses of radiation are delivered precisely to the tumor over a short course of time, often called hypofraction-ation.

Usually SRT is delivered in one or at most a few doses, often using patient positioning/immobilization techniques and real-time im-age guidance to achieve great precision during treatment delivery. SRT is considered ideal for small tumors that are at a safe distance from radiosensitive normal structures. There are three different delivery devices used in SRT.

1. Gamma knife entails delivering gamma rays, which are beams of high energy x-rays that are emitted from radioac-tive cobalt and delivered precisely to the tumor mass from different angles.

2. Linear accelerators generate high energy x-rays that are like gamma rays but have higher energy. One popular device that delivers x-rays stereotactically under robotic control is known by its brand name, CyberKnife.

3. The third method uses a cyclotron-based device that gener-ates proton beams directed to the tumor site. Proton-beam therapy is reputed to be less damaging to surrounding tis-sue than x-ray beams, but it is much more expensive and is available in only very few centers.

To date, no prospective clinical trials have been done to determine if there is any difference in efficacy among the three stereotactic methods.

“There are two categories of patients that may be helped by surgery: Patients who have a localized, regional recurrence such as within a lymph node or patients with metastatic disease who have a solitary metastasis to an organ, such as the liver, or lung, or brain where the tumor can be removed. Patients with bone metastasis usually have pain so that doing a procedure is going to relieve a significant burden on them and improve their quality of life. Clinical trials are now going on to see if the combination of the newer targeted treatments and cytoreductive surgery shows a clear benefit.” — Dr. Simon Hall, Assistant Professor and Chair of Urology at Mount Sinai Medical Center


Stereotactic practitioners claim that high-dose stereotactic radia-tion is effective in all cancers including kidney cancer, since higher doses overcome the innate tumor radioresistance, especially found in kidney cancer. Stereotactic radiotherapy has been proven to be effective in treating brain and vertebral column metastases from kidney cancer, eradicating a small number of lesions of minimal size (less than 3.5 centimeters). The smaller the lesion, the more effective the radiosurgery as a higher dose can be delivered with minimal collateral damage. Larger lesions have to be removed by surgery, however SRT is commonly used to sterilize the resected cavity of residual tumor cells to prevent recurrence of the cancer.

Whole brain radiation (conventionally fractionated EBRT) is sometimes used to treat several lesions in the brain from kidney cancer all at once. The problems with whole brain radiation are that it may be less effective because it delivers lower radiation doses to the metastases and, secondly, it can also lead to cognitive impairment. There is an ongoing trial (NCCTG N107C) to inves-tigate whether whole brain radiation or stereotactic radiosurgery is more effective in preventing recurrence of brain metastases that have been removed by surgery.

Radiotherapy is less frequently used to treat kidney cancer me-tastasis to other body organs such as the lung. However, there are a number of ongoing trials in non-small cell lung cancer that are comparing the efficacy of stereotactic radiotherapy versus surgical resection, the results of which may be applicable to the treatment of kidney cancer lung metastases. In bones, radiotherapy is com-monly used to reduce pain, sometimes in combination with medi-cal treatment.

When considering radiotherapy for metastases, it is important to research your options: what types of radiotherapy does the center offer, how long have they been offering their services, what is their experience with your particular problem, what is the experience of the doctor who will treat you, has he published his results or presented them at conferences? Is the center multidisciplinary, i.e., do they offer medical, surgical and radiological options or combi-nations thereof? As always, it is prudent to get a second opinion.

“For selected patients with met-astatic RCC, radiation therapy or stereotactic radiosurgery can provide excellent tumor and/or symptom control”. — John H. Suh, Department Chair, Radiation Oncology, at the Cleveland Clinic

Radiation Risks

Radiation is a double-edged sword. If your doctor orders a CT scan or other x-ray imaging tests, Dr. Rebecca Smith-Bind-man, a specialist in radiology and biomedical imaging at the University of California, San Francisco, urges that patients ask “What is this test for? Do I need it? Why? Do I need it now?” Radiation therapy uses much higher doses than are used in imaging, but, she says, the risk of developing a cancer years later due to the therapy—about one half of one percent— is worth the benefit if it helps save your life.

Managing My Cancer

INTERVENTIONAL RADIOLOGY

As discussed in Guide 1, Understanding My Disease, interventional radiology is sometimes used in the treatment of primary kidney cancer to ablate or destroy the tumor by delivering heat or cold to the cancer cells. These ablative techniques can also be applied to metastatic lesions. There are two methods to deliver heat: a) radio-frequency (RF) waves are delivered as electrical current and pass through a needle that is inserted under the skin and directed to the tumor, and b) a newer method uses microwaves, also delivered through a probe, to heat the lesion. For cold therapy, or cryoabla-tion, a probe containing pressurized gas cools the tumor site which causes it to be engulfed by an ice ball that grows around the tip of the probe to freeze and destroy the cancer cells. Both heat and cold treatments use imaging (CT scans, ultrasound, or MRIs) to insert the probe into the tumor bed and monitor the progress. The pro-cedures are considered to be minimally invasive, and often do not require an overnight hospital stay.

The interventional radiologist is a trained diagnostic radiologist who further specializes in interventional radiology. The major side effects can be damage to adjacent organs or tissue. Since the liver and lung are highly vascular, bleeding could occur.

Ablation, similar to surgery, is considered most effective when tar-geting one, two or possibly three metastatic lesions with a maxi-mum lesion size of 3 cm, and there is usually a low rate of recur-rence of the lesion at the same spot. However, if the metastases are diffuse, systemic medical treatment is called for. Bear in mind that, as these procedures are minimally invasive, they may be repeated, if necessary. This feature allows ablative techniques to be used in conjunction with the newer targeted medical therapies to “clean up” a few nodules left over after systemic medical treatment.

In addition to ridding the patient of metastatic disease, ablation can be used as palliative therapy, especially in relieving patients who have pain due to bone metastasis. In a small, multi-center, cryoablation study reported by the Mayo Clinic in October 2012, the average patient-reported worst pain was reduced by 80% over a 24-week period.


Several studies have reported an immune reaction after treatment with cryoablation or RF ablation. This is usually reported as an up-take in the cancer-fighting white blood cells, however, one medical journal described two cases where, after RFA was administered to a single kidney cancer metastasis to the lung, the other distant lung metastases spontaneously regressed. The researchers specu-late that this reaction was due to the body’s immune system recog-nizing the fragmented pieces of tumor as being foreign and there-by developing a defense against the still living tumors in the lung. A clinical study is needed to determine whether immunotherapy could enhance the body’s defenses after ablation is performed.

The type of ablative technique that is used seems to depend more on the practitioner and what he feels most comfortable with, al-though the decision can also depend on the size and location of the metastasis and other factors.

If you are considering interventional radiology, it is very impor-tant to find a doctor who is well experienced in these techniques to ensure the best possible outcome with the least side effects. A listing of board certified doctors can be found at the Society of In-terventional Radiology website, http://doctor-finder.sirweb.org/.

OTHER TREATMENTS FOR BONE METASTASES

Bisphosphonates, drugs such as zoledronic acid (Zometa), may be used. Zoledronic acid slows thinning of the bone, reduces pain, and decreases abnormally high levels of calcium in blood. In a large scale Phase III trial of metastatic patients with multiple my-eloma and solid tumors, including kidney cancer, another agent called denosumab (Xgeva) showed itself to be similar in effica-cy, especially with regard to onset of what’s call skeletal-related events, e.g., new bone mets. Note that a reported side effect with these drugs is osteonecrosis of the jaw, so if you intend to have dental work or have poor dental hygiene, you should discuss this with your doctor before proceeding. If you should develop bone metastases, your doctor’s choice of therapy will depend on sev-eral factors including the location and number of bone mets, your overall health, and any treatment you may have already received.

Immune Reaction Several studies have reported an immune reaction after treatment with cryoablation or RF ablation, especially in the lungs. In a study of two cases after RFA was administered to a single kidney cancer metastasis to the lung, the other distant lung metastases spontaneously regressed. A clinical study is needed to determine whether immunotherapy could enhance the body’s defenses after abla-tion is performed.

Managing My Cancer

Medical Treatments

IMMUNOTHERAPY

Kidney cancer is one of the few cancers that sometimes respond to immunotherapy (also called biological therapy) and, in rare cases, it has even completely disappeared without treatment (spontane-ous remission). This unique quality has led to a search for agents to boost the body’s own cancer-killing activities.

The immune system is designed to fight off foreign invaders in-cluding cancer cells. For instance, T-cells and Natural Killer cells (NK) are white blood cells that target cancer cells. But for reasons still being researched, cancer cells “learn” to evade the body’s own defenses.

Several kinds of immunotherapy are used to treat metastatic RCC. A standard treatment employs cytokines. Two of the most com-monly used cytokines are Interleukin-2 (IL-2) and interferon-al-

Killer T-cells attacking a tumor.

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pha. High dose IL-2 has been shown to shrink or sometimes com-pletely destroy kidney cancer. In the latest study of 120 patients on high-dose IL-2, 40% of patients showed some tumor shrinkage, and in 6% of these, the tumors disappeared altogether (complete response). The study also found that there was no biomarker pre-dictor of which patients would respond to the treatment. Note that IL-2 does not usually work in papillary patients.

Although IL-2 is highly toxic and is effective just for a small mi-nority of patients, it is the only approach that has shown long-term remission. For this reason, many oncologists recommend it as a first-line therapy for otherwise healthy patients who have clear cell RCC. If you and your physician decide to try IL-2, you must be relatively healthy, and be treated in a hospital where the staff has extensive experience with this drug. Ask your doctor where the nearest center is that has this expertise. Side effects from IL-2, which are often severe if not counteracted, can be fatal in rare cases. However, most IL-2 side effects are temporary, and disap-pear after treatment ends. They include low blood pressure, fluid accumulation in the lungs, kidney damage, fever, chills, nausea, and diarrhea. These adverse events should be actively treated, and pre-treated if possible, by experienced hospital staff.

After treatment, patients can appear to have been badly sunburned and can experience intense itching and peeling skin for several weeks. For relief, any treatment other than steroids, including hy-drocortisone, can be used. Steroids should never be used before, during, or for at least six months after IL-2 treatment because they block the immune-boosting effects of IL-2. Interferon-alpha, which is less effective, is rarely administered as a monotherapy in the United States, but is sometimes used in conjunction with a targeted therapy.

TARGETED TREATMENTS

An exciting advance in the past few years has been the develop-ment of targeted treatments for patients with metastatic kidney cancer. These are drugs specifically designed to interfere with the ability of the cancer to grow and divide. Since December 2005, the

Biomarker: A biological molecule used by oncologists to measure how well the body responds to a treatment.

Taking Charge of Your Hospital Care

“You can institute your own plan for ‘patient-centered care’ on the first day of hospitalization,” writes Dr. Julia A. Hallisy in her excellent book, The Empowered Patient. Tell every member of the medical team responsible for your care that you expect to see and converse with them every day at rounds. Have it noted in your chart that you insist on being consulted in your care. Don’t let the medical team leave until they answer all of your questions. This book is recom-mended reading for patients and caregivers if hospitalization is required.

Managing My Cancer

FDA has approved seven targeted therapies for use in metastatic RCC. These drugs do not attack the tumor directly, but work by inhibiting molecular pathways, many of which block angiogenesis, which is the production of new blood vessels needed to nourish the cancer cells. In other words they starve the cancer. One group of drugs inhibits tyrosine kinase (TK) enzymes that are involved in signaling growth factors such as VEGF (Vascular Endothelial Growth Factor), which allow blood vessel growth to take place. Another group of kinase blockers called mTOR inhibitors stops angiogenesis through a different pathway. One targeted therapy, bevacizumab, is a monoclonal antibody that blocks VEGF from binding to receptors needed for new blood growth.

Because targeted treatments are more like sniper bullets than the scattershot of cytotoxic chemotherapy, they have fewer side ef-fects, resulting in a higher quality of life. Targeted therapies are not curative. The best of them add about 28 months to overall survival. That being said, someone can take a targeted therapy until it stops working then switch to another one and so on and expect to get additional efficacy.

Tyrosine Kinases:Tyrosine kinases are enzymes that help regulate cell growth and reproduction. Upon signal-ing, a TK can activate multiple cell pathways. Abnormal TKs may function even in the ab-sence of signaling and can have a significant role in the growth and spread of kidney cancer as well as other cancers. A tyrosine kinase inhibitor is often abbrevi-ated as TKI.

mTOR:A protein that regulates cell growth, survival, and prolif-eration as well as angiogenesis. Dysregulation of mTOR can play a critical role in the patho-genesis of a number of diseases such as tuberous sclerosis, epilepsy, and cancer.

Cytotoxic:Cytotoxic agents kill cells.

Chemotherapy

Chemotherapy is not usually effective in treating kidney cancer, however, in some cases it is used, specifically for collecting duct (Bellini) cancer and for kidney cancer with sarcomatoid features.


Generic Name Brand Name Approved Manufacturer Compound Given or Distributor

interleukin-2 Proleukin May 1992 Novartis/Prometheus cytokine IV infusion

sorafenib Nexavar Dec 2005 Bayer/Onyx TKI orally

sunitinib Sutent Jan 2006 Pfizer TKI orally

temsirolimus Torisel May 2007 Pfizer mTOR inhibitor IV infusion

everolimus Afinitor Mar 2009 Novartis mTOR inhibitor orally

bevacizumab Avastin Jul 2009 Genentech monoclonal antibody IV infusion

pazopanib Votrient Oct 2009 GlaxoSmithKline TKI orally

axitinib Inlyta Jan 2012 Pfizer TKI orally

APPROVED MEDICAL TREATMENTS FOR RCC

The table below lists the FDA-approved medical treatment for kidney cancer, the generic and brand name of the drug, when it was approved, the manufacturer(s) and distributor (if different from the manufacturer), the mechanism of action, and how it is administered.

Please note: all the treatments included in the table were tested almost exclusively on clear cell patients, but some of these drugs have shown efficacy in papillary cell carcinoma and other types of kidney cancer.

Bevacizumab:Bevacizumab is a monoclonal antibody (mAB) that inhibits the protein VEGF, which stimulates the growth of blood vessels that feed the tumor. mABs are copies of a single antibody that is cre-ated in the lab and designed to target specific proteins and can have side effects that are related to the proteins they target. Bevacizumab can cause high blood pressure, bleeding, poor wound healing, blood clots, and kidney damage.

FDA Approved Medications for Kidney Cancer

For a complete list of side effects go online to the drug manufacturer’s site. For example, if you google “pfizer and sunitinib and side effects,” a site with the side effects of that drug immediately comes up.

Managing My Cancer

Promising Drugs in Clinical TrialsTivozanib patients in a Phase III trial had a PFS of 11.9 months as compared to 9.1 months for patients on sorafenib. Aveo, the drug manufacturer, applied for FDA approval. However, since the ap-plication was submitted, new data have shown that of the patients on sorafenib, 81% were still alive after a year compared to 77% of those who were on tivozanib. Aveo has presented further analysis to the FDA, with their response expected soon.

BMS-936558 is an antibody that blocks a protein called PD-1, which the cancer cells use to prevent T-cells from attacking the tu-mor. In clinical trials, this drug has been shown to shrink or elimi-nate some tumors for more than a year. Bristol-Myers Squibb has initiated a large scale Phase III trial testing BMS-936558 against everolimus in metastatic clear cell patients who have undergone prior anti-angiogenic therapy.

Dovitinib has been well-tolerated and has shown anti-tumor ef-fects with progression-free survival of 5.5 to 6 months in RCC patients, all of whom had prior treatment with different targeted therapies. Novartis has initiated a Phase III clinical trial for pa-tients with RCC whose metastasis failed to respond to both TKI and mTOR inhibitor therapies.

AGS-003 is a novel form of immunotherapy that combines the patient’s dendritic cells—a type of immune cell—with RNA from the patient’s tumor. There is almost no additional toxicity in com-bining this with sunitinib. In a preliminary study of AGS-003 and sunitinib, patients with intermediate risk had a PFS of 16.1 months as compared with 10.6 months with sunitinib alone. Poor-risk pa-tients also did better, with a 6.0 month PFS compared with a 3.7 month PFS respectively. Argos Therapeutics is starting a Phase III trial with AGS-003 in combination with sunitinib before the end of 2012.

Cabozantinib is a TKI that has shown positive results in several different cancers. Used in a small Phase I trial of 25 heavily treated kidney cancer patients, it resulted in a PFS of 14.7 months, a highly positive result. In a Phase II trial for prostate cancer, the drug has

PFS: An abbreviation for progression-free survival.

Paul’s Story

“I was diagnosed with stage 4 kidney cancer in April 2006. When the cancer returned in January 2007, I was told to put my affairs in order. But now, six years later and I’m still here after going through 6 surgeries and 12 different drugs. People ask me, how do you deal with it? I get this mind-set. I say to myself, you got to do what you got to do to stay alive, and somehow you get through it. I’m fortunate to have my wife, my children and a supporting cast of characters who are always willing to go to the hospital and the doctors and call to see how I’m doing. I’ve beaten the odds. I love life and I’m not ready to go.”


Drug Resistance On average, targeted therapies can work for about a year, at which point the tumors start to grow again, requiring a different therapy.

Second-Line Therapies Second-line therapies are used after failure of a therapy in treatment-naïve patients, i.e., the initial therapy for patients who have not yet been treated.

Erlotinib: Erlotinib is used in non-small cell lung cancer, pancreatic can-cer, and other cancer types, but not much in kidney cancer.

been shown to reduce or eliminate bone metastasis as well as being effective in reducing soft tissue tumor size. So far there is no infor-mation on whether the biotech company, Exelixis, plans to follow up on the highly promising results in RCC. Cabozantinib has been approved by the FDA for treatment of one type of thyroid cancer.

Stem Cell Transplants and VaccinesFarther off in the future are stem cell transplants that could com-pletely eradicate RCC. Dr. Richard Childs of the National Heart, Lung, and Blood Institute of the NIH, is the leading researcher on stem cell transplants in kidney cancer, that is, replacing a patient’s immune system with that of a closely matched donor. He has done 74 transplants, with 29 positive responses, and 8 complete (tumor-free) responses. Two people are still disease-free after 14 and 11 years post-transplant. Dr. Childs has also discovered a virus in more than 70% of clear cell kidney cancers, which may be a target for future drugs or vaccines. Up to now, no vaccine has proved to be effective in kidney cancer.

Which Therapy Should I Begin WithThere are no hard and fast rules about which sequence to use. Nor are there any biomarker indicators as to which drug is right for which patient.

Many physicians start with one of the targeted therapies such as sunitinib, pazopanib, or bevacizumab on patients with good or in-termediate risk factors, and give temsirolimus to those with poor risk factors. They reserve interleukin-2 for selected patients with clear cell histology who are able to tolerate a short but highly toxic treatment. Patients who are good candidates for IL-2 should con-sider taking it as their first treatment since taking IL-2 directly after targeted therapies has led to cardiac issues, and no further treat-ment may be necessary if IL-2 works. The NCCN recommends the use of everolimus and axitinib as second-line therapies. They also recommend, for papillary patients, temsirolimus and even er-lotinib. These recommendations are justified by the results of trial data, which, in the case of papillary and other non-clear cell types, is rather sparse.

Managing My Cancer

Patient and physician preference also plays a role. Some patients prefer to take drugs orally rather than intravenously, which requires a hospital setting. Furthermore, doctors often prefer one treatment over another because they have more experience with that particular therapy, or because the institution with which they are affiliated is conducting research with certain drugs. To avoid individual biases, it is wise to consult two, three or more doctors before choosing a treatment.

Drug Toxicity or Side Effects of TreatmentAs long as you are responding to a therapy and can tolerate the side effects, it is best to continue using it. If you have had previous treatment for kidney cancer, tell your medical team what drug(s) you have been taking and when it was given. Some side effects may be due to the earlier drug not having completely cleared your system.

Below are some of the common side effects of TKIs and mTOR inhibitors and ways to ease them. Your oncologist or medical cen-ter personnel should be able to suggest others. It is best to stay with the dosage prescribed by your doctor in order to maintain the efficacy of the drug. If you find that the side effects are becom-ing worse or intolerable, you should discuss with your physician


the possibility of lowering the dosage or changing the schedule or even taking a break for a few days. But you should not modify your dosage without first consulting your doctor.

SIDE EFFECTS

Common side effects of TKIs are diarrhea, fatigue, hypertension, hand/foot syndrome, stomatitis (mouth sores), hypothyroid-ism, and hepatic/renal dysfunction. mTOR toxicities include di-arrhea, fatigue, hyperglycemia, hypertension, infection, pneu-monitis, rash, and stomatitis. People with pre-existing COPD or fibrosis should be wary of taking mTOR inhibitor drugs. Other less common side effects are also possible. Check the manufac-turer’s website and ask your doctor if you have unusual symptoms. Bevacizumab, a monoclonal antibody, is usually well-tolerated but it can also cause serious side effects such as hypertension, bleeding or problems with blood clotting and wound healing and, rarely, neurological problems.

EASING SIDE EFFECTS

Fatigue Lack of energy, extreme tiredness, wanting to stay in bed all day are among the most challenging side effects. Possible rem-edies are short naps, relaxing activities, drinking plenty of fluids and eating well, light exercise, prescription drugs, physical and/or psychotherapy for depression or anxiety, and psychostimulants. It is important to eliminate or treat possible underlying causes such as depression, anemia, and hypothyroidism. Fatigue may also sig-nal that the disease is getting worse.

Stomatitis or Mouth Sores Stomatitis, which is commonly found in TKIs and mTOR inhibitors, can be quite painful. To prevent mouth sores, brush teeth gently and thoroughly with soft-bristle brush and mild toothpaste such as Biotene or a children’s non-mint brand. Floss carefully without cutting into your gums. Use mouthwash frequently with gentle products such as Biotene, or rinse with warm water and baking soda several times a day. If you develop mouth sores, there are a several remedies that might help including prescription Gelclair and magic mouthwash com-

Beneficial Side Effects

Interestingly, some side effects are actually associated with better response to the drug. For instance, in studies of axitinib, sunitinib, and bevacizumab, patients who had increased hy-pertension did better than those whose blood pressure did not rise. This benefit continued even after they were given anti-hy-pertensive medication. There is also evidence that patients who get hand/foot syndrome survive longer than those who don’t.

Hand/Foot Syndrome: Reddening, swelling, numbness, and peeling on palms and soles.

Stomatitis: Inflammation of the mucous lining of the mouth.

Pneumonitis: Inflammation of lung tissue.

Managing My Cancer

pounded by a pharmacist using equal portions of lidocaine, Maal-ox, and benadryl. If infections or fungus develop, ask your doc-tor for drugs you might use. Caphosol, a new therapy available by prescription, has been shown to reduce the severity and duration of mucositis.

Nausea It is best to deal with the early onset of nausea by taking the maximum dose of over-the-counter remedies. If this doesn’t work, there are powerful prescription anti-nausea drugs that are very effective. Some of these are cheaper generics. But if these aren’t effective, try Kytril (granisetron) or Zofran (ondansetron). Adding ginger to the diet may also help, but make sure ginger ale contains real ginger and not just a flavoring. Prescription Marinol can be very helpful and will stimulate appetite along with easing nausea.

Diarrhea It’s best to prevent diarrhea before it becomes debilitat-ing. One or two doses of Imodium daily will usually do the trick. If not, your doctor can recommend another medication.

Pneumonitis This side effect usually occurs two to six months into therapy. The main symptoms are difficulty breathing accompanied by a cough. It is a potentially dangerous condition and requires immediate medical intervention.

Mucositis: Oral mucositis is mouth sores, usually due to side effects of cancer medicine.

Light exercise can help combat lack of energy and fatigue.


Hand/Foot Syndrome Protect your hands and feet with thick cot-ton socks and gloves. Put gel inserts or soft inner soles into your footwear; you may need larger shoes to accommodate them and to deal with swelling. Elevate your feet as much as possible. Avoid hot water. Use moisturizers that are free of fragrance and alcohol. Other helpful suggestions include massaging your hands and feet before bedtime with a soothing lotion or cream that contains urea. Wear socks and gloves to keep the cream in place while you sleep. Try henna dye for hand/foot syndrome; google “henna and hand-foot syndrome” for more information. If symptoms become intol-erable, discuss possible dose adjustment with your doctor.

Rashes Avoid rashes by staying out of the sun. Use topical oint-ments if a rash develops. Sometimes an antibiotic ointment may be required.

Hepatic/Renal Dysfunction Problems with your liver or kidney must be checked using bloodwork at each regular follow-up ap-pointment for your drug treatment.

Hyperglycemia Blood sugar should be monitored during your regular blood tests. If sugar levels go up, they may need to be con-trolled by diet changes or a prescription medication. This side effect is not diabetes, and it should go away when treatment is stopped.

Hypertension High blood pressure must be treated by a doctor. It usually responds well to standard medications. You can monitor it at home in addition to your regularly scheduled tests.

Hypothyroidism Low thyroid function causes fatigue, but it is possibly a sign that the cancer treatment is working. Your doctor will need to prescribe replacement thyroid hormones to raise your energy level.

Many of the above-mentioned side effects can be serious, and anything that worries you or seems out of the ordinary should be reported at once to your oncologist. Something as common as fa-tigue or unusual weakness may signal a problem with the thyroid, which can easily be treated. Your oncologist should warn you in advance of any side effect that must be reported immediately. Even common side effects may require medical treatment, especially if they are severe.

Managing My Cancer

Help with Paying for DrugsMany of the drugs mentioned in this brochure are very expen-sive, but hopefully lack of funds won’t stop you from getting the care you need. Most drug manufacturers have programs that can help patients who are having trouble paying for their medication. Check the manufacturer’s website to find assistance. There are also a number of organizations that can help with co-payments for cancer drugs. Most of these entities have income limitations. Fol-lowing is a list of a few of them.

Patient Advocate Foundation helps with co-payments for kidney cancer patients. Call 866-512-3861 or go to www.copays.org.

If you are on Medicare and have Part D, NORD (National Orga-nization for Rare Disorders) Patient Assistance Program helps with co-payments. They currently have a disease assistance pro-gram that assists patients with advanced RCC taking the follow-ing second-line treatments: Afinitor and Inlyta. Have your doctor use insurance code 189 for kidney cancer. For more information on NORD, visit their website at http://tinyurl.com/7q43693 or call 866-828-8902.


The HealthWell Foundation has co-payment assistance for Wilms Tumor patients. Call 800-675-8416 or go to http://www.health-wellfoundation.org/.

Further information resources are Medicare http://tinyurl.com/ 939fksy, the American Cancer Society http://tinyurl.com/3hb4-mu6, NeedyMeds at http://www.needymeds.org, and Partnership for Prescription Assistance at https://www.pparx.org.

Some organizations have funded selected types of cancer pay-ments for prescription co-payments, but may have temporarily run out of funding for kidney cancer. It’s worth checking back with these organizations, one of which is the CancerCare Co-Payment Assistance Foundation. Call 866-55-COPAY (866-552-6729) or go to www.cancercarecopay.org.

Clinical TrialsA clinical trial is an option at any stage of treatment. The trial treatment is provided free, although you still need to pay for rou-tine testing and doctor appointments. Most of the treatments used today are the result of past clinical trials. Drug manufacturers and

Maria’s Story

“We are very proactive, even after we were told that there was nothing we could do. We would do the research and we just didn’t stop when someone said this is all we have. We said find us a trial or help us find one.” (Caregiver)

Clinical trials find new therapies and advance research.

Managing My Cancer

biotech companies are always researching better ways to target therapies using the latest research findings in the hope of achiev-ing longer remissions, increasing life span, and creating better quality of life.

PHASES OF CLINICAL TRIALS

In order for a drug to receive FDA approval, it must first go through a series of clinical trials to prove efficacy (how well the drug works) and safety. These are conducted only after laboratory and animal testing have been completed. Trials are categorized into phases, defined as follows.

Phase I, which in kidney cancer usually involves only 20 to 40 patients, determines a safe dose, how the treatment should be ad-ministered, and how it affects the human body.

Phase II, which usually includes 30-50 people, gauges the efficacy of the drug on kidney cancer and how it is tolerated by a larger group of patients.

Phase III, which enrolls an average of 600-800 patients in multiple centers, compares the new drug with the current standard treat-ment. If the outcome of the trial is successful, the company applies to the FDA for approval of the drug.

HOW CAN I BENEFIT?

Some patients with metastatic kidney cancer elect to take part in a clinical trial in the hope of receiving the most cutting-edge treat-ment. If the new treatment works, you may be among the first to benefit from it. It is a proactive choice in your medical care, and you will have the satisfaction of knowing that you have helped to advance the search for a cure. If you want to be certain of receiv-ing the drug being investigated, you may want to enter a clinical trial when it is in the initial testing phases, either I or II, which are open label trials.

Clinical trials that in are Phase III have usually worked out most of the dosages and safety issues. But the drawback to participat-ing in a Phase III clinical trial is not knowing which drug you

Randomization

The gold standard of clinical trials is a double-blind random-ized trial in which neither the patient nor the investigator knows who is receiving the new drug or the best standard treatment. This is used in all Phase III trials and some Phase II trials. Randomization is done to eliminate any possibility of human bias.

Open Label: The drug being tested is identified.


are receiving. Phase III trials always involve a comparison between treatments. Other aspects to consider are that new treatments may have side effects that may be worse than the standard treatment, the new drug may not work for you, or your insurance may not cover all your costs. The NCI (National Cancer Institute) has an excellent summary of clinical trials, including insurance issues. See NCI information at http://www.cancer.gov/clinicaltrials.

HOW CAN I PARTICIPATE?

You, your caregiver, and your medical team should discuss wheth-er you would benefit from a clinical trial. You may be ineligible for certain clinical trials if you have already had another kind of treatment.

If you decide to opt for a clinical trial, there are many ways to find one. Often the best place to start is to ask the doctor at your medi-cal center and any other doctors you may have used or interviewed earlier. You can also search for clinical trials at www.cancer.gov/clinicaltrials/search, or chat at www.cancer.gov/livehelp, or call 800-422-6237. Another source is http://www.emergingmed.com/pub_AboutUs.asp or call 877-601-8601. You can also visit www.acor.org to join the appropriate kidney cancer mailing list and post a question, or call the American Cancer Society at 800-227-2345.

Patient Empowerment

Be Your Own AdvocatePatient advocacy requires that you and/or your caregiver stay in-formed about the latest treatments, research, and clinical trials as much as possible for your particular type of kidney cancer. The ever-increasing amount of information available through the in-ternet, TV and print media, and social media networks is so vast that even physicians in the field may not be aware of the latest developments. Patient advocacy does not mean that you take over your own treatment, but rather that you partner with your medical team in choosing the best option available for your individual case.

Managing My Cancer

JOIN A SUPPORT GROUP

Support groups of kidney cancer patients and survivors provide you with a safe place to discuss your concerns, issues, and feelings with people in the same situation. By sharing your experiences and information, you can get the real scoop about doctors, new treatments and clinical trials, side effects of medication, and other matters by those who have actually been there. The social worker at your medical center can put you in touch with a support group or you can join one online.

JOIN A LISTSERV

There are many nonprofit online communities that you can join that have news and interactive group discussions. One of the best of these is the Association of Cancer Online Resources (www.acor.org). Join one of the kidney cancer listservs for your particular type of kidney cancer.

Social media sites like Facebook.com/ActionToCureKidneyCancer are one way to keep current with information and communicate with other patients and caregivers.


Record KeepingIt is vitally important that you keep copies of your own medical records and read them carefully. Ask your doctor about anything in a report that you don’t understand or feel should be looked at fur-ther. Even in this computer age, records get lost, and human error can occur when entering data. You or your caregiver should com-pile lists of all your doctors appointments, tests, exams, and reports such as your pathology report. Keep careful notes of all your treat-ments, medications, and supplements so that anyone who treats you, including your primary care physician, can make certain that unwanted interactions do not occur.

Staying WellIn the end, you and your caregiver bear much of the responsibil-ity for your health. Look for the best medical team. Discuss your concerns and expectations with them freely. Be compliant in tak-ing your medicine correctly. Keep a schedule of all your follow-up care and read all the reports carefully. Maintain a healthful lifestyle. If you note any change in your physical condition, bring it imme-diately to your doctor’s attention. Your vigilance about your own health and well-being is the key to having the best outcome.

Renee’s Story

“In 2008, my husband went to an orthopedist complaining of back pains. The orthopedist ordered an MRI. Although the radiologist, in his report, noted the presence of a kidney tumor and suggested follow-up, neither the orthopedist nor the family doctor read the entire report, so there was no follow-up. By the time my husband was diagnosed with kidney cancer two years and seven months later, the cancer had already metastasized and was now Stage IV. He was treated with targeted therapy, but, sadly, he died of the disease 1.5 years after starting treat-ment. My goal is to tell everyone when you get any part of a test, any report, read it yourself. Don’t ever depend on a doctor or anyone else.”

Managing My Cancer

“Taking Charge” Guide 3

Guide 3, Caring for My Caregiver, is about empowering the people who are helping you, including what to expect as a caregiver, reducing stress, finding “mentors,” dealing with “burnout,” handling insurance issues, and working with your medical team.

Stay in Touch with ACKC

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Join our Committee. Meetings are held in New York City. Contact us for more information.

Contact ACKC

Action to Cure Kidney Cancer 150 West 75th Street, New York, NY 10023

Telephone 212 714 5341 Email: [email protected]

Credits

Written and Researched by Carol Kahn Designed by Sara Mears | Communication By Design

Page 4, 6-8 illustration: Kimberly Battista

Renal Cell Carcinoma TMN Staging (pages 6-8): Edge SB, Byrd DR, Compton CC, eds. AJCC Cancer Staging Handbook, 7th ed., New York, NY: Springer, 2010

Page 11, 30, 33 and cover images: istockphoto.com Page 12 image: © Philip Rink Photography Page 19 image: © Photo Researchers, Inc. Page 21, 22, 27, and 29: gettyimages.com

© 2013 Action to Cure Kidney Cancer

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