A Guide to Kidney Cancer
Updated February 1, 2017
KIDNEY CANCER ANSWERS AND GUIDANCE
Introduction: Where do I go from here?
When life throws questions your way, what you need – quite simply – is information, answers, and direction. This online guide has been developed to provide you with clear and practical information about kidney cancer.
As we learn more about the nature of kidney cancer, we will continue to discover better ways to diagnose early stage kidney cancer, and new options for even more effective treatment. And with new discoveries, further questions will inevitably arise that need answers.
To find what you seek in the road of life, the best proverb of all is that which says: "Leave no stone unturned."
Understanding Kidney Cancer
‘Cancer’ is not an all-inclusive or singular term. For each location in the body where cancer can occur, whether lung, skin, kidney or elsewhere, there are differences in disease characteristics, and how it can be treated.
Kidney cancer is a unique type of cancer with distinctive characteristics. Detection of kidney cancer is difficult because there are often no obvious signs or symptoms until a tumour may be quite large. Many of the symptoms that might occur – palpable mass, flank pain, or blood in the urine – may become manifest only when the cancer has grown to a large size. These considerations may lead to important delays in diagnosing kidney cancer, which may in turn lead to more advanced disease stage at diagnosis and may undermine treatment efficacy.
Fortunately, the majority of patients with kidney cancer do not belong to this category of patients. Most patients are diagnosed with incidental kidney cancer. This form of kidney cancer is discovered when the individual is being tested for something completely different, by ultrasound, CT scan, or another type of test.
The terms ‘kidney cancer’ and ‘renal cell carcinoma’ are often used interchangeably, but in fact renal cell carcinoma is the most common type of kidney cancer. Renal cell carcinoma includes several types of kidney cancer that are classified according to their appearance under the microscope, which is termed “histological type”. The three most common are the clear cell, chromophobe and papillary types. Renal cell carcinoma is also classified according to its extent or stage. (See What does staging mean?)
- Clear cell renal cell carcinoma: A type of cell that looks clear inside when viewed under a microscope. Clear cell renal cell carcinoma is the most common type of kidney cancer. Approximately 75–80% of kidney cancers are this subtype.
- Papillary renal cell carcinoma: The second most common type of kidney cancer. Approximately 10–15% of kidney cancers are this subtype.
- Chromophobe renal cell carcinoma: This type accounts for only 5% of all kidney cancers. Chromophobe kidney cancer rarely spreads outside of the kidneys.
- Collecting duct carcinoma: A rare type of kidney cancer that arises in the collecting ducts of the kidneys.
"Cancer is a word, not a sentence."
- Dr. Robert Buckman
- Canadian Cancer Society
What is kidney cancer?
Kidney cancer is the 10th most common occurring cancer in Canada. It is more common in men than in women. Kidney cancer occurs most often in people 45 years of age and older. Like many cancers, the exact causes of kidney cancer are not really known. However, there is scientific evidence that the following factors increase your risk of developing kidney cancer.
Some people develop kidney cancer without having any of these risk factors. Also, having some of these risk factors does not mean you will develop kidney cancer. Other risk factors may be linked with kidney cancer, but there is not enough evidence to show that they cause kidney cancer and more study is needed to clarify the role they may play.
Canadian Cancer Society
Cancer Care Ontario
Kidney Cancer Care
World Cancer Research Fund International/American Institute for Cancer Research. Continuous Update Project Report. Diet, Nutrition, Physical Activity and Kidney Cancer. Canadian Urological Association Journal. 2015. Available at: wcrf.org/kidney-cancer-2015.
Qayyum T, Oades G, Horgan P, et al. The epidemiology and risk factors for renal cancer. Current Urology. February 2013;6(4):169-74.
Types of Kidney Cancer
Kidney cancer is a term that encompasses many different types of cancer that may arise in the kidney. The kind of kidney cancer that you may have depends on which cells of the kidney became abnormal or cancerous. The best treatment is based upon the type of kidney cancer you have and its size. In very rare cases, kidney cancer may be related to a hereditary disorder such as VHL Syndrome (see Genes, Genetics and Kidney Cancer in this Guide).
Genes, Genetics and Kidney Cancer
You have genes in every cell in your body. Genes are the instructions that control the way your cells develop, grow and work. Some genes promote cell growth and others slow cell growth. Cancer is caused by changes called mutations that cause damage to genes. Mutations that affect how these genes function can allow cells to grow out of control and play a part in cancer developing.
|GENE MUTATIONS HAPPEN IN ONE OF TWO WAYS:|
SOME CLUES THAT KIDNEY CANCER MAY BE HEREDITARY INCLUDE:
It is important to remember, that most kidney cancers occur by chance (are sporadic) and usually happen as a person gets older. Only about 3% to 8% of kidney cancers are hereditary.
- Family history and hereditary kidney cancer
- Inherited disorders that increase kidney cancer risk
- Assessing genetic risk and genetic counselling
- Should I have genetic testing?
Haas NB, Nathanson KL. Hereditary renal cancer syndromes. Advances in Chronic Kidney Disease. 2014; Jan; 21(1):81-90.
Hampel H, Bennett RL, Buchanan A, et al. A practice guideline from the American College of Medical Genetics and Genomics and the National Society of Genetic Counselors: referral indications for cancer predisposition assessment. Genetics in Medicine. 2015; Jan;17(1):70-87.
Ho TH, Jonasch E. Genetic Kidney Cancer Syndromes. Journal of the National Comprehensive Cancer Network. 2014; September;12(9):1347-1355.
Lattouf JB, Pautler SE, Reaume MN, Eva ,et al. Structured assessment and followup for patients with hereditary kidney tumour syndromes. Canadian Urological Association Journal. 2016; 10(7-8):E214-22.
Linehan WM. Genetic basis of kidney cancer: role of genomics for the development of disease-based therapeutics. Genome Research. 2012; Nov;22(11):2089-100.
National Cancer Institute. The Genetics of Kidney Cancer (Renal Cell Cancer) (PDQ®) - Health Professional Version. Updated: 10/13/2016.
Reaume MN, Graham GE, Tomiak Eva, et al. Canadian guideline on genetic screening for hereditary renal cell cancers. Canadian Urological Association Journal. 2013; 7(9-10):319-323.
U.S. National Library of Medicine. Genetics Home Reference: Your Guide to Understanding Genetic Conditions. Help Me Understand Genetics. Published: 12/1/2016
What does staging mean?
Staging is a way of classifying cancer so that you and your healthcare team understand how far the cancer has progressed. The cancer stage describes the tumour size and tells whether it has spread beyond the place in the kidney where it started to grow.
There are many different treatments for kidney cancer. Knowing the stage helps your doctor determine the best approach to treatment.
The following staging system tells you:
- how large the tumour is
- if cancer cells have spread
- how far and where cancer cells have spread.
What each stage means
This stage is called metastatic kidney cancer and presence of kidney cancer in other organs or parts of the body are called metastases.
- Canadian Cancer Society
Staging for kidney cancer
What it means when cancer metastasizes?
The term ‘metastasize’ describes the spread of cancer beyond the original site of the cancer to other parts of the body. To understand how cancer metastasizes, it is helpful to review how cancer first occurs.
Cancer begins when normal kidney cells change, or mutate. These cancerous cells then begin to multiply at a much faster rate than normal cells would, and form a tumour.
Once a tumour is large enough, its cells begin to release a substance called vascular endothelial growth factor, or VEGF, which stimulates the surrounding blood vessels to grow. This process is referred to as angiogenesis. The increased blood supply enables the tumour to continue to grow, but also starts to carry tumour cells from the kidney throughout the rest of the circulatory system to other parts of the body, where new tumours may develop.
It is important to note that if a new tumour develops in a different area of the body – for example, in the lung – this is referred to as kidney cancer that has metastasized, not a new diagnosis of lung cancer.
Understanding the nature of kidney cancer, including how it metastasizes, helps to direct research into more effective treatments.
- Medline Plus
- Canadian Cancer Society
Disease progression of kidney cancer
- National Cancer Institute
How staging affects treatment
The exact sequence of steps in your treatment plan will be decided by your unique needs.
Usually, Stages I to III are initially treated by surgery alone. However, in some cases a clinical trial may be offered for neo-adjuvant treatment (a treatment given as a first step to shrink a tumour before the main treatment) either before surgery, or immediately afterward.
Treatment for Stage IV kidney cancer, also called advanced or metastatic kidney cancer, ideally requires surgery in combination with one or more types of medical therapy.
Canadian Cancer Society
Treatement of kidney cancer:
Treatment for Kidney Cancer
A study* conducted among advanced kidney cancer patients and their caregivers has shown that greater patient involvement in their care and treatment leads to better quality of life.
If you are diagnosed with kidney cancer, a treatment plan will be designed for you by your healthcare team. It is important that you and your physician make informed decisions together after considering the possible treatment options, including potential side effects of medical treatments. A positive approach to treatment can help you cope with the physical demands of surgery and/or medical treatment and can support your recovery. A treatment plan for kidney cancer may include one or more of the following:
Two or more forms of treatment are often used in combination, such as surgery to remove a primary tumour followed by radiation treatment or medication to destroy any cancer cells that may remain.
* Kidney Cancer Canada Patient Care Study. Conducted in 2009 by Ipsos Health among 84 patients living with advanced kidney cancer and their caregivers.
Sometimes your doctor may suggest an approach called active surveillance. This means watching your kidney tumour closely by doing imaging tests such as CT scans, MRIs or ultrasounds and waiting to start treatment until the tumour grows or starts to cause problems. This may be an option for some people with small, slow-growing renal masses (tumour is smaller than 4 cm), or if you are elderly and have other serious health problems. Some patients may not be healthy enough for surgery, or their kidney tumour may not pose a large risk to their health at the time, so treatment and the risks associated with it are delayed until it is really needed. Kidney tumours smaller than 4 cm rarely spread (metastasize). They can usually be removed by doing a partial nephrectomy or treated with ablative therapies, if they start to show aggressive features during surveillance.
The doctor may do a kidney, or renal biopsy, to find out if your kidney mass is cancer or not, what type of tumour it is, how fast it may grow and is likely to spread (tumour histology). This can help them determine if active surveillance is an appropriate option for you.
You may also wish to become part of an active surveillance clinical trial for kidney cancer, if one is available and you are a suitable and willing participant.
American Society of Clinical Oncology (ASCO) - Cancer.Net
International Kidney Cancer Coalition (IKCC)
Jewett Michael A.S., Rendon Ricardo, Lacombe Louis, et al. Canadian guideline for the management of small renal masses. Canadian Urological Association Journal. 2015; 9(5-6):160-3.
Surgery represents one of two standard treatment options (the other being medication) for kidney cancer, including metastatic kidney cancer. Traditional, open surgery may be used, in which an incision is made in the skin to remove the kidney and other sites of metastases, if indicated. Laparoscopic surgery, also called minimally invasive surgery (MIS), is an option in certain cases. With this technique, surgery is performed through small incisions, guided by a camera and using thin instruments. There are important advantages over traditional surgery, such as shorter hospital stay, shorter recovery times, less postoperative discomfort, and less scarring. Unfortunately, not all surgeries for locally advanced or metastatic kidney cancer can be performed laparoscopically.
The advantage of partial nephrectomy over radical nephrectomy (entire tumour-bearing kidney removed) is the preservation of renal function. It is very important to preserve as much renal function as possible. The preservation of a part of the tumour-bearing kidney may prevent complications related to renal insufficiency. The most serious of these complications is dialysis. Unfortunately, a partial nephrectomy cannot always be considered. Removal of the entire kidney is often necessary when the tumours are large.
What to expect after your surgery
As with any type of surgery, there are certain risks and side effects, such as post-operative discomfort, fatigue, and weakness. Be sure to discuss the potential risks and side effects specific to your situation with your doctor prior to surgery.
Canadian Cancer Society:
Management of kidney cancer: Canadian Kidney Cancer Forum Consensus Update
Canadian Kidney Cancer Forum 2009
For advanced kidney cancer, medical treatment options are used in addition to surgery. Medical management options may include targeted therapy, radiation therapy, or a combination of these.
Most therapies can be taken by mouth at home. Other types of therapy are given intravenously, requiring you to go to your doctor’s office or clinic to receive them. Unfortunately, there is no therapy that permanently cures kidney cancer. However, there are several therapies that can provide long-term remissions (periods where kidney cancer is dormant).
Targeted therapies act on the molecular pathways (a series of actions among molecules in a cell that lead to a certain cell function) involved in the development and spread of kidney cancer. These drugs work by shrinking and slowing the growth of cancer cells and slowing the growth of blood vessels to the tumour.
Current research is focusing on continually refining the action of these targeted therapies. The type of targeted therapy prescribed will depend on the type of kidney cancer, the stage, and any previous targeted therapies used. Targeted therapies currently available in Canada are listed alphabetically below.
|DRUGS APPROVED BY HEALTH CANADA|
|Afinitor® (everolimus tablets)||Indicated for the treatment of patients with metastatic renal cell carcinoma (RCC) of clear cell morphology, after failure of initial treatment with either of the VEGF-receptor TKIs sunitinib or sorafenib.|
|Inlyta® (axitinib tablets)||Indicated for the treatment of patients with metastatic renal cell carcinoma (RCC) of clear cell histology after failure of prior systemic therapy with either a cytokine or the VEGFR-TKI, sunitinib.|
|Lenvima® (lenvatinib capsules)||May be used in combination with everolimus to treat patients with inoperable, advanced or metastatic kidney cancer who have had a VEGFR-targeted therapy before.|
|Nexavar® (sorafenib tablets)||Indicated for treatment of locally advanced/metastatic renal cell (clear cell) carcinoma (RCC) in patients who failed or are intolerant to prior systemic therapy.|
|Sutent® (sunitinib capsules)||Indicated for treatment of metastatic renal cell carcinoma (mRCC) of clear cell histology.|
|Torisel® (temsirolimus concentrate for injection)||Indicated for the treatment of metastatic renal cell carcinoma (RCC).|
|Votrient® (pazopanib tablets)||Indicated for the treatment of patients with metastatic renal cell (clear cell) carcinoma (mRCC) who have received no prior systemic therapies or who have received prior treatment with cytokines for metastatic disease.|
|COMING DOWN THE PIPELINE|
|Cometriq® (cabozantinib tablets)||
Has not yet been approved by Health Canada for the treatment of patients with advanced or metastatic kidney cancer who have had prior drug treatment.
Cabozantinib is available in Canada under the Special Access program; we do not know the end date of that program.
Radiation therapy involves using a high-energy beam of radiation directly on a tumour to destroy cancer cells and shrink tumours.
When other forms of therapy cannot be used, this technique represents a potential option. It consists of blocking the blood vessels that provide blood flow to the tumour. Under some circumstances, this form of therapy may help with planned surgery or may alleviate problems related to the tumour, such as pain or bleeding. Embolization may be used for the tumour situated within the kidney, as well as for metastases.
Your immune system can recognize abnormal cells and destroy them. This is the basic science behind how immuno-oncology therapy works. Immuno-oncology (IO) therapy is a new (and old) way to treat cancer by activating your immune system in the hope that it will recognize and attack your kidney cancer.
One of the earliest treatments for cancer was a kind of immune therapy. A number of other immune-type therapies have been developed, such as interferon and interleukin-2, but side effects, cost and variable benefits have limited their usefulness.
More recently, newer types of immuno-oncology or IO therapies have been proving successful in some types of cancer. For example, results from early trials of immuno-oncology for advanced skin cancer (melanoma), lung cancer and kidney cancer have been encouraging and some of these drugs have already been approved for use in Canada.
To understand how the new IO therapies work, it is important to know how our immune system works. If you want to learn more about your immune system and how it works, please read this first.
(The Immuno-Oncology Therapy content on this page is an adaptation from the 10-FOR-I.O. website)
Canadian Cancer Society
Management of kidney cancer: Canadian Kidney Cancer Forum Consensus Update
Canadian Kidney Cancer Forum 2009
VEGF receptor TKIs = vascular endothelial growth factor receptor tyrosine kinase inhibitors.
Exploring new treatment options
For patients with advanced or metastatic kidney cancer, enrolling in a clinical trial is an option that provides access to the newest type of treatment not yet approved in Canada. If participating in a clinical trial is of interest to you, speak with your healthcare team to determine if you are a potential candidate.
Clinical trials are carefully designed to help ensure patient safety and ethical practice. Clinical trial participants are informed in detail about how the clinical trial will proceed and any possible side effects or risks they may encounter. Participants are closely monitored throughout their trial experience to ensure that the treatment is safe and well tolerated.
By participating in a clinical trial, you are not only helping to test a potential new medication, you are accessing a potential new therapy, and you are actively supporting important scientific research and progress in the treatment of kidney cancer.
Canadiancancertrials.ca: Canadiancancertrials.ca has formed a partnership with cancer programs across Canada to guide patients who are considering taking part in clinical trials when they are offered treatment for their cancer. The site’s search function enables patients to search by cancer type, province, drug or key word.
clinicaltrials.gov: ClinicalTrials.gov is a registry of federally and privately supported clinical trials conducted in the U.S., Canada and around the world. ClinicalTrials.gov provides information about a trial's purpose, who may participate, locations, and contact numbers for more details. This information should only be used in conjunction with advice from your healthcare team.
For ease of reference, we have organized major clinical trials according to where you are on the treatment journey:
Navigating Tests and Reports
Ongoing monitoring as you go through treatment and in follow-up involves a certain number of tests, including laboratory tests and imaging techniques. It’s important to keep a copy of the test results available so they can be discussed with your healthcare team so that you clearly understand the meaning and their implications.
Kidney cancer can affect the levels of certain chemicals in the blood. Blood chemistry tests evaluate such things as electrolytes (sodium, potassium, chloride, bicarbonate), blood urea nitrogen (BUN), calcium, and creatinine. These substances indicate whether the patient can or cannot tolerate certain treatments. For example, some medications may affect renal function. Serum creatinine provides information on whether renal function is or is not adequate. These blood levels are routinely measured before and during therapy.
Liver function tests
These tests assess levels of albumin, ALP (alkaline phosphatase), ALT (alanine transaminase), AST (aspartate aminotransferase), gamma-glutamyl transpeptidase (GGT), prothrombin time, serum bilirubin, and urine bilirubin. These substances indicate whether the patient’s liver can or cannot tolerate certain treatments. These are routinely measured before and during therapy.
Complete blood count (CBC)
- The number of red blood cells (RBCs)
- The number of white blood cells (WBCs)
- The total amount of hemoglobin in the blood
- The fraction of the blood composed of red blood cells (hematocrit)
- Average red blood cell size (MCV)
- Hemoglobin amount per red blood cell (MCH)
- The amount of hemoglobin relative to the size of the cell (hemoglobin concentration) per red blood cell (MCHC)
- Platelet count
These substances indicate whether the patient’s red blood cells (allow the functioning of all organs), white blood cells (immune cells) and platelets (coagulation) are adequate to tolerate certain treatments. These are routinely measured before and during therapy.
Analysis of substances present in the urine. Some medications may affect renal function and the presence of these substances may be detected in the urine. For example, protein is usually not present in the urine. Excessive amounts of protein may imply kidney damage.
Further detail can be found at MedLine Plus (a service of the U.S. National Library of Medicine and the National Institutes of Health) at www.nlm.nih.gov under Renal Cell Carcinoma.
- MedLine Plus A.D.A.M. Medical Encyclopedia
Questions to Ask Your Healthcare Team
It is important for you to learn as much as possible about your own experience with kidney cancer, and your options for treatment. You may feel – quite rightly – that there is a lot you don’t know or understand, but you may need some help to formulate your questions.
The following list of questions has been developed by Kidney Cancer Canada in conjunction with healthcare professionals. You may find it helpful to check off the ones that apply to you, and bring them to your next appointment.
Further questions are available at the Kidney Cancer Canada website kidneycancercanada.ca
Possible sources of answers to your questions
- Your family physician
- Your oncologist (Medical, Surgical or Radiation)
- Your clinic nurse
- Other members of your healthcare team
- Printed information from the hospital or clinic
- Books; either specifically on kidney cancer or on cancer in general
Write down your questions at home as you think of them – then, take your written list of your questions with you to your appointment. You can post a blank page on a bulletin board or your refrigerator where it is handy when questions occur to you.
Write down the answers that the doctor gives to your questions so that you can refer to them later. You may wish to consider taking a relative or friend along with you to help you to remember or record the answers to your questions.
General questions about kidney cancer and your care
- Will my ability to conduct my daily activities or work be affected? If yes, for how long? Can I continue to work during my treatment? How soon can I return to work after my treatment?
- How will kidney cancer affect my family?
- How do I tell my family and friends about my cancer?
- Who will be on my healthcare team?
- What resources are available for me at my treatment centre?
- Is there an oncology social worker available for patient support and financial information?
- What kind of follow-up can I expect to receive during/after treatment?
- What kind of schedule of appointments might I have?
- Where can I go to get more information about kidney cancer or about my treatment?
Questions to ask about your treatment for metastatic kidney cancer
- What are my treatment options and where can I get access to them?
- What are the benefits of each treatment option?
- What are the risks or side effects of each treatment option?
- Will I have the opportunity to have input on my treatment plan?
- What treatment does my doctor recommend and why?
- How is this drug reimbursed?
- How does this treatment work?
- What is my treatment plan?
- Once I have completed treatment, how often will I see my healthcare team for follow-ups?
- What are the benefits of the treatment I’ve been prescribed?
- What are the side effects of the treatment I’ve been prescribed?
- Who should I contact in case of side effects?
- What can I do to manage these side effects?
- What are the chances of recurrence of my cancer with these treatment plans?
- What kind of symptoms might I have if my cancer has recurred, or is worsening?
- What is the long-term outlook with and without treatment?
- How long will it be before you see possible results from the treatment?
- What should I have available at home for any possible side effects?
- When I get home will I be able to take care of myself or will I need help?
- If my symptoms worsen, what should I do?
- Are there any clinical trials that I could participate in?
Questions to ask about participation in a clinical trial
- What kind of therapy is the clinical trial testing?
- Why do researchers think that this approach might be effective?
- How are the study results and the safety of participants being monitored?
- How long will I be in the study?
- What are the possible benefits to me? What are the possible risks?
- How do the benefits and risks of the trial compare to those of other treatment options?
- What kinds of tests or procedures will I have during the trial? Are any of these tests and/or procedures experimental?
- Will I be able to take my regular medications while in the trial?
- What happens to my treatment when the trial is over
Optimizing Your Health
It is important to discuss your dietary and activity needs with your healthcare team and make these a part of your treatment plan. In addition to following your treatment as prescribed by your doctor, the following strategies can help you optimize your health while going through treatment:
- Follow a healthy diet – for strength and energy, to support kidney function and for overall health
- Manage stress – by staying active and getting exercise, as appropriate
- Stay informed – make sure you understand everything about your treatment and any possible side effects
- Get support – ask your healthcare professional about available support services. A list of support organizations by province is available through Kidney Cancer Canada at kidneycancercanada.ca
Living well with one kidney
If you have had surgery to remove either a whole kidney or a part, it is important to treat your remaining kidney well. One kidney is actually capable of performing the normal functions of both kidneys. However, while it is possible to live a normal and active life, it is important to make healthy lifestyle choices. Poor dietary and lifestyle habits can overwork a single kidney, causing diminished kidney function, which may lead to kidney failure. Therefore, if you treat your remaining kidney well, your entire body will benefit.
Your diet needs special attention
Besides the fact that a healthy diet is important for your overall health, your diet is especially important with respect to supporting kidney function. You may wish to ask your physician if you can speak with a registered dietician (RD) about specific dietary recommendations for living well with one kidney or reduced kidney function.
Some dietary considerations may include the following:
Protein: digestion of protein produces the waste product urea, which is then filtered from the blood by the kidneys. A diet that is high in protein requires the kidney(s) to work harder to excrete the resulting higher amounts of urea. A diet containing low to moderate amounts of protein may be recommended.
Sodium is filtered from the blood by the kidneys. A diet that is high in salt makes higher demands on the kidney(s). Reducing the amount of salt in your diet may be recommended.
Phosphorus levels in the blood may be elevated when kidney function is compromised, and this can cause problems like joint pain. An RD may recommend limiting high-phosphorus foods such as seeds, nuts and beans, as well as foods containing moderate amounts of phosphorus such as milk, cheese, meat, fish, and poultry.
Alcohol can cause kidney damage if consumed in large amounts, therefore moderate alcohol consumption may be recommended.
Fluid balance in the body is regulated by the kidneys, and excess water is filtered out. It is important to stay well-hydrated, but excess fluids can strain your kidney function.
Managing side effects
Side effects are unfortunately a part of treatment with any medication, including cancer therapies. The kind of side effects depends mainly on the type of the therapy. Side effects may not be the same for each person, and they may change from one treatment session to the next. Some therapies are better tolerated than others by different individuals. Before treatment starts, your healthcare team will explain possible side effects associated with your specific treatment and suggest ways to help you manage them. In some cases, side effects from a particular therapy may prove intolerable, and a switch will be recommended.
Be proactive: Maintain your plan for follow-up care
Follow-up care is an important part of your treatment plan. Even when the cancer seems to have been completely removed or destroyed, it sometimes may return or progress because cancer cells can remain in the body after treatment. Your healthcare team will monitor your recovery and check for signs of progression or recurrence of cancer. Follow-up checkups help to ensure that any changes in health are noted, and your healthcare team should advise you on signs or symptoms to be aware of and report.
Guidelines for follow-up care depend upon your type of tumour and stage of disease. The Canadian Urological Association (CUA) publishes guidelines for follow-up care.
These guidelines are included on the Kidney Cancer Canada website under the section ‘Resources’ and on the CUA website at www.cua.org
"Attitude is a little thing that make a big difference." - Winston Churchill
- Canadian Cancer Society
Supportive care for kidney cancer
- MedLine Plus: Nutrition
- Kidney Cancer Association
Advocacy: be your own best supporter
As a patient diagnosed with kidney cancer, you want the absolute best care that is currently available. If you choose to, you can play an important role in every decision about your treatment. Many patients feel they gain a sense of empowerment and control by taking an active role in their own care. And it doesn’t have to be difficult. It can be as simple as asking more questions at your next doctor’s appointment.
To accomplish long-term remissions, the treatment of advanced kidney cancer virtually always requires the sequential use of several therapies. People living with kidney cancer deserve to have timely access to the treatments that can help them and at an affordable cost. It could be an existing treatment, a newly approved medication, or one that is still in clinical trial but showing promise.
Unfortunately, not all treatments are available to all patients. Advocacy is about doing something to change access to a kidney cancer therapy – initiating action to effect needed change. Advocacy can make a difference because government decision-makers react to credible groups or individuals who effectively bring their issues to the public agenda.
“There is a direct connection between empowering patients with information and support and improved access to the best available care.” Deb Maskens, mRCC patient and Chair, Kidney Cancer Canada
You can start your advocacy efforts with two steps:
Learn about cancer drug access in Canada and in your province
Become informed about how a treatment is reviewed and approved, and the criteria provincial reimbursement managers use to assess whether to fund the treatment. Each province makes its own decision about funding new drugs. Formularies not only list which medicines the province will reimburse, they also set the criteria for reimbursement, including the timing of access to a treatment – i.e., as first-, second- or third-line treatment. Each provincial government reviews the evidence on the treatment’s efficacy and safety; how it compares to any similar treatments; and the cost-effectiveness of the treatment and how cost compares to treatments that are considered comparable. If approved, the provincial public drug plan will pay for residents to access the treatment. If not approved, access may be available through the individual’s private healthcare insurance, or by paying out-of-pocket.
Write a letter, and encourage others to join you
One of the most effective ways to start advocating to provincial governments for access to treatments for kidney cancer is by writing a letter to your provincial Member of Parliament. Understanding the process of cancer drug access and being able to effectively present the importance of a particular therapy, not only in your treatment plan but that of others, will help you to present a well-informed case. And because many voices are that much more effective, encourage others to join you in your letter-writing campaign.
To assist you, Kidney Cancer Canada provides extensive information and direction on the steps you can take to advocate for treatment access, including sample letters by province. See the section Current Advocacy Campaigns on their website at kidneycancercanada.ca
Kidney Cancer Canada works with the following Canadian advocacy organizations. Their websites provide another opportunity to make your voice heard:
- The Cancer Advocacy Coalition of Canada (CACC)
The CACC publishes the Annual Report Card on Cancer in Canada. canceradvocacy.ca
- The Canadian Organization for Rare Disorders (CORD)
CORD is currently advocating at the Federal level to promote orphan drug coverage for rare disorders, including rare cancers such as renal cell carcinoma. raredisorders.ca
- The Canadian Cancer Action Network (CCAN)
CCAN has commissioned an excellent report entitled "Issues of Cancer Drug Access in Canada". This 90-page report is available as a PDF download on their website. Kidney Cancer Canada plays an active role on the Pharmaceutical Issues Committee of CCAN.
- Kidney Cancer Canada
- Canadian Cancer Society
- Canadian Partnership Against Cancer
- CancerView Canada
- Canadian Cancer Action Network
- Cancer Advocacy Coalition
- Canadian Cancer Trials
- Canadian Urological Association
A network of cancer support centres
100 Questions & Answers About Kidney Cancer
By Steven C. Campbell MD PhD, Brian I. Rini MD, Robert G. Uzzo MD FACS, Brian R. Lane MD PhD, Stephanie Chisholm PhD
Answers to literally 100 questions about kidney cancer, from the basics of kidney function to diagnosis, staging, and the many facets of treatments for localized and metastatic disease.
The production of this guide was supported by Novartis Oncology.