WHAT IS KIDNEY CANCER?

Kidney cancer is a type of cancer that occurs in the cells of the kidney. Cancer is caused by the rapid abnormal overgrowth of cells within the kidney. Our bodies are always making new cells: so we can grow, to replace worn-out cells, or heal damaged cells after injury.
This process is controlled by certain genes and all cancers are caused by changes to these genes. Changes to our genes usually happen during our lifetime, although a small number of people inherit such a change from a parent.

As with all cancers, kidney cancers begin small and grow larger over time. Kidney cancers usually grow as a single mass but more than one tumour may occur in one or both kidneys. These lumps can be benign (not cancerous) or malignant (cancerous). Benign lumps do not spread to other parts of the body.

When it first develops a malignant tumour is confined to its original site. If cancer is treated in its early stages, the potential for cure of the cancer can be very good. If these cells are not treated, they may spread into surrounding tissue and to other parts of the body. When these cells reach a new site they may continue to grow

Incidence of Kidney Cancer
In Australia, kidney cancer is one of the ten most common cancer diagnoses. It is estimated that 3,000 people received a diagnosis of kidney cancer in 2012.

Between 1991 and 2009 the incidence of kidney cancer has increased by approximately 30%. The increase in diagnosed kidney cancer may be due to the aging of the population, better diagnostic methods, or increased rate of coincidental diagnosis during scans for other reasons.

Kidney cancer is mostly a disease seen in adults aged over 55, and is rare in children.

Australians have a 1 in 69 risk of developing kidney cancer before the age of 85 (1 in 49 for males and 1 in 110 for females). Males are currently twice as likely to develop kidney cancer as females. Kidney cancer is mostly a disease seen in adults aged over 55, and is rare in children.
Survival 
Worldwide, over 100,000 people die of kidney cancer each year. Kidney cancer caused 927 deaths in Australia in 2009 (575 men, 352 women), accounting for 2% of all cancer deaths, and for 0.6% of all causes deaths.
Survival from kidney cancer has increased greatly over time. The 5-year relative survival from 47% in the period 1982-1987 to 72% in 2006-2010. The 5-year survival rate is similar for males and females overall, although females aged 50–59 (5-year survival of 83%) had a slight survival advantage over males of the same age (76%).
Improved outcomes are due largely to increases in the detection and survival of early-stage renal cell carcinoma, the most common form of kidney cancer.
Health Professionals - register to receive our Kidney Cancer Newsletter 2014>

Different types of kidney cancer 
Around 85% of kidney cancers are renal cell carcinomas. These cancers begin to grow in the lining of one or both kidneys. Without treatment, this type of cancer can spread to other parts of your body.

Other (less common) types of kidney cancer include:

• Transitional cell carcinoma – starts in the join between the kidney and its ureter (the tube that drains urine from the kidney into the bladder)
• Renal sarcoma – a rare type of kidney cancer.
• Wilm’s tumour – a rare type of kidney cancer that affects children.

SOURCES OF DATA

• Australian Cancer Incidence and Mortality Book (2010) AIHW Canberra & Australasian Association of Cancer Registries
• Cancer in Australia: an overview 2012 Cancer series no. 74. Cat. no. CAN 70. Canberra: AIHW
• AIHW 2012 Cancer in Australia: in brief 2012 Cancer series no. 73. Cat. no. CAN 69. Canberra: AIHW.
• Australian Institute of Health and Welfare Cancer survival and prevalence in Australia: period estimates from 1982 to 2010 2012. Cancer Series no. 69 Cat. no. CAN 65. Canberra: AIHW

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RISK FACTORS & SYMPTOMS OF KIDNEY DISEASE?

If you understand and know the risk factors for CKD and ask your GP for a regular kidney health check, you can help detect chronic kidney disease early and improve long term outcomes.
You are at increased risk of chronic kidney disease if you:

• adult Australians are at an increased risk of CKD if they:
  • have diabetes
  • have high blood pressure
  • have established heart problems (heart failure or heart attack) and/or have had a stroke
  • have a family history of kidney disease
  • are obese (Body Mass Index (BMI) - more than or equal to 30)
  • are a smoker
  • are 60 years or older
  • are of Aboriginal or Torres Strait Islander origin

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WHAT ARE THE SYMPTOMS OF KIDNEY DISEASE?
There are no warning signs for CKD and individuals can lose up to 90% of their kidney function before they feel any symptoms - and by then it's too late.
The symptoms of reduced kidney function may include:

• high blood pressure
• changes in the amount and number of times urine is passed, e.g. at night
• changes in the appearance of urine
• blood in the urine
• puffiness e.g. legs and ankles
• pain in the kidney area
• tiredness
• loss of appetite
• difficulty sleeping
• headaches
• lack of concentration
• itching
• shortness of breath
• nausea and vomiting
• bad breath and a metallic taste in the mouth

These symptoms may worsen gradually as kidney function declines. However, the symptoms are very general and may be caused by other illness. If you are you are at increased risk of kidney disease, as explained above, or are experiencing many of these symptoms, ask your doctor for a kidney health check. See some real life stories of personal journeys with kidney failure.
 
WHAT ARE THE STAGES OF KIDNEY FAILURE - WHAT DO THEY MEAN?
These images represent different stages used by doctors to determine the severity of chronic kidney disease:

This image taken from Kidney Stories - for Indigenous Australians - presented with graphics made available by NT Renal Services
Early stages of kidney failure - small amount of kidney damage, although GFR may be normal

• Often there are no symptoms in the early stages of kidney disease, blood tests can be normal.
• There may be scarring and blockages that change blood flow to parts of the kidney so they don't work as well as they should.
• There is an increased risk of heart disease. You doctor can help you reduce your risk of heart disease.

Middle stages of kidney failure - sometimes discovered because level of waste product in the blood rises

• Some people begin to feel unwell and notice an increase in urine frequency.
• Blood pressure can rise as the kidneys slow down. High blood pressure further increases the risk of heart disease, heart attack and stroke.
• Early signs of bone disease may be present.
• Anaemia may appear, caused when there are not enough red blood cells in the blood to carry oxygen around the body. Symptoms include weakness, fatigue and a shortness of breath.

Later stages of kidney failure

• High blood pressure almost always occurs.
• You may start to notice changes in the amount of urine you pass.
• Lack of energy, increased tiredness and reduced appetite are common symptoms.
• You may need to make dietary changes, including limiting the use of salt or reducing the amount of potassium or phosphorus in your diet.

End-Stage Kidney Disease (ESKD)

• The kidneys are only functioning at 10-15 per cent of their capacity and are unable to properly filter waste products, remove extra water from the body and help maintain the blood's chemical balance.
• This is the time to consider commencing dialysis or having a kidney transplant.

Adjusting to kidney failure is more difficult for some people than others, even with time to prepare for it. When there is no time to prepare, the sudden impact makes dealing with kidney failure much harder.

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How our kidneys work

The role of the kidneys is often underrated when we think about our health. In fact, the kidneys play an important role in the daily workings of our body. They are so important to health that nature gave us two kidneys to cover the possibility that one might be lost to an injury. They are so important that with no kidney function death occurs within a few days.

We can live quite well with only one kidney and some people live a healthy life even though born with one missing. But while bones can break, muscles can waste away and the brain can sleep without risk to life, if both of your kidneys fail, as happens in end stage kidney failure, the body dies without life saving dialysis.

How do our kidneys work? 
The kidneys play a major role in maintaining your general health and wellbeing. Think of them as an extremely sophisticated, environmentally friendly, waste disposal system which sorts non‐recyclable waste from recyclable waste, 24 hours a day, seven days a week, while also cleaning your blood.

Most people are born with two kidneys, each one about the size of an adult fist, are bean-shaped and weigh around 150 grams each. The kidneys are located at both sides of your backbone just under the rib cage or above the small of your back. They are protected from injury by a large padding of fat, your lower ribs and several muscles.

In each kidney, blood is filtered through millions of mini‐filters called ‘nephrons’. The excess fluid and unwanted chemicals from this filtering process become urine and are passed from the kidneys to your bladder.

What do your kidneys do?
Our kidneys are small biological marvels with a fascinating design. Every hour your blood supply circulates through the kidneys about 12 times. Each day your kidneys process around 200 litres of blood, with around 1 to 2 litres of waste leaving the body as urine.
The kidneys also play a role in the production and regulation of several important hormones and enzymes, which help to:

• Control blood pressure
• Make red blood cells
• Maintain strong and healthy bones

All this makes the kidneys a vital player in your body’s mechanism and your overall health.
Anatomy of the kidneys
We have about a million hairpin-like glomeruli at birth, but lose about 100,000 of these every decade of life. Droplets of filtered blood pass through a number of tubules (tiny tubes) into the medulla, a central collecting region. The glomeruli and tubules together make up nephrons, long and extremely fine tubes which, if connected, would run for 80 kilometres (50 miles).
Cleaned blood returns to the body by the renal vein. Waste and extra water removed by the kidney passes through a tube called the ureter to the bladder, where it is stored as urine or wee. When the bladder is full, urine passes out of the body through another tube called the urethra.
The process of removing waste and extra water in simple terms is:

• food and drink enters the stomach and are broken down into nutrients
• solid waste products are removed and nutrients enter the bloodstream.
• nutrients are used by the body for energy, growth, repair and maintenance of body functions.
• this process creates waste which is removed by the kidneys.
• extra nutrients not immediately needed by the body are also removed by the kidneys.
• waste products and extra water move from the kidneys to the bladder, then leave the body as urine

Our kidneys are designed to last a life-time, they do an amazing job!  It is important to care for them.
We recommend these kidney education tools below for a visual introduction to the kidney. Click on diagrams to view animations * How our kidneys work * How dialysis works to replace the work of healthy kidneys,

Click diagram go to animation How a healthy kidney works>	Click diagram go to animation Structure of the kidneys and bladder>

Kidney Health Australia acknowledges DaVita for allowing use of these images their excellent teaching resource on our website.
How can I look after my kidneys?
There are many risk factors that can contribute to kidney disease, and it’s important to be aware of these risks and take the right steps to prevent kidney damage.
Stop Smoking
If you don’t smoke, don’t start. If you do, quit! This is the simplest, most important lifestyle habit to change to reduce the risk of kidney disease. People who smoke are three times more likely to have reduced kidney function, and have a four to five times greater risk of heart attack and stroke. Tips to help you quit:

• Get the appropriate help. Order a free QUIT pack - call QUIT Hotline 137 848 or contact your local community services directory or health centre for a referral to a smoking cessation program.
• Surround yourself with people who are non‐smokers.
• Talk to your general practitioner. Research shows that spending as little time as three to five minutes talking with your health practitioner can increase your quit rate.
• Find healthy alternatives to smoking, such as meditation and yoga.

What can I do to keep my kidneys healthy?
Key recommendations to staying healthy and maintaining kidneys health are:

• Keep your blood pressure below 130/90 and maintain healthy levels of cholesterol
• If you have diabetes make sure you actively treat your blood glucose levels - normal levels are 4-6 mmol/L before meals and 4-8 mmol/L two-hours after meals.
• It’s important to have your cholesterol levels checked regularly - recommended level is no higher than 5.5 mmol/litres.
• Lead a healthy lifestyle and maintain healthy weight, be active for more than 30 minutes most days.
• Eat a balanced healthy diet low in saturated fats.

Healthy Eating
The food you eat plays a huge role in the health and well being of your body. As well as providing the body with a variety of nutrients, food choices can also help in weight reduction and weight control. Tips to help you do this are:

• eat healthy foods - with as many fresh ingredients as possible.
  
• don't over eat - always leave a meal feeling like you could eat a little bit more.
  
• eat breakfast - a good breakfast activates your metabolism first thing in the morning.
  
• avoid fad diets - they are hard to maintain over a long period and can create or worsen ill health.
  
• check nutrition panels on all parceled foods you buy - choose only foods that list a low percentage of sugar and salt and are low in saturated fats - find out about food ingredients.

To satisfy thirst - drink water instead!
Drink plenty of fluids and listen to your thirst. Water is the recommended choice, it is also calorie-free, inexpensive and readily available. Sugar drinks have lots of calories, while caffeine and alcohol are both diuretics and can leave the body dehydrated.

Research also states that one drink containing sugar each day, has been shown in females to be associated with an 80 % increase in the risk of acquiring diabetes. Choose to drink water instead!
Note: Bottled mineral water contains salt which can lead to fluid retention and even increased blood pressure in susceptible people. Check the label and choose low sodium varieties (less than 30mg sodium per 100ml).

Losing weight can reduce how hard your kidneys need to work
Weight loss can also lead to a decrease in the amount of protein lost via urine. High levels of protein in the urine can make your kidney function worse. Obesity may also cause some people with existing forms of some kidney disease to lose their kidney function more rapidly.

There is also evidence to suggest excess weight is also associated with an increased risk of kidney cancer. If you are overweight, you have an increased risk of developing diabetes and high blood pressure - both are major risk factors for kidney disease. Losing as little as 5 kilograms reduces blood pressure in most people who are 10% above a healthy weight.

Do at least 30 minutes of physical activity most days of the week
Stay fit. The key is to start slowly and gradually increase time and intensity of activities. Physical activity leads to increased strength, stamina and energy. You can break down any activity into 3 x 10 minute bursts, which can be increased as fitness improves.

STOP exercising without delay, tell your health care team, or go to hospital if you:
-  have chest pain or pressure
-  feel dizzy or light headed
-  have an irregular or fast heart beat that persists when the activity is completed
-  have excessive shortness of breath

Limit alcohol intake
Excessive alcohol intake can lead to heart disease and high blood pressure, increasing the risk of kidney disease. Tips to cut down on your alcohol intake:

• Limit alcohol to less than two standard drinks per day.
• Ask for ice with your drinks – when the ice melts it will dilute alcohol.
• Alternate your drinks by having a glass of water in between each alcoholic drink.
• If you want to feel like you’re partaking in a drinking session, fake it – drink your water from a wine glass.

Enjoy Life
Good health and wellbeing means that we are healthy from all dimensions of our lives – physically, mentally, socially and spiritually. Tips for an enjoyable life:

• Have less stress in your life.
• Do the things you love.
• Spend more time with people you enjoy being
• with – those who challenge you to be more… not less.
• Balance the load.

 KidneyEd TV
Our collection of YouTube videos, grouped into playlists, enable you to learn more about the kidneys, urinary system and related topics. View reviewed kidney health education videos at KidneyHealthAus - on YouTube.

Without any kidney function our body dies. Some kidney function is essential for life!

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WHAT CAN GO WRONG WITH THE KIDNEYS? Most kidney diseases attack the nephrons. Sometimes kidney failure can happen quickly, caused for example by a sudden loss of large amounts of blood or an accident. A sudden drop in kidney function is called Acute Kidney Failure and is often short lived, but can occasionally lead to lasting kidney damage.

More often kidney function worsens over a number of years. This is actually good news, because if kidney disease is found early, medication, dietary and lifestyle changes can increase the life of your kidneys and keep you feeling your best for as long as possible.
Kidney disease progression can also be slowed with medicines which help to protect your kidneys. Your GP can prescribe these medicines for you. Talk to your local pharmacist when you have your prescription filled. Take the test at Check My Kidneys to find out if you are at increased risk of kidney disease.
What does Chronic Kidney Disease mean?
If you lose over one third of your kidney function for over 3 months, it is called Chronic Kidney Disease or CKD.

Sometimes kidney disease leads to kidney failure, which requires dialysis or a kidney transplant to keep you alive. Early detection and treatment can help prevent kidney failure and the need for dialysis or transplant treatment.
If you are diagnosed with CKD, this means that your kidneys have been damaged and are not working as well as they should normally. Kidney disease is called a ‘silent disease’ as there are often no warnings.

• It is not uncommon for people to lose up to 90% of their kidney function before getting any symptoms.
• People can live a near normal life with as little as 20 percent of their total kidney function.
• When symptoms do occur the initial signs may be general, such as feeling tired or generalised itching. 
• As kidney disease progresses, symptoms can include changes in the urine (reduced volume, discolouration, blood or pus), nausea and vomiting and appetite loss.
• Other symptoms include swollen or numb hands and feet (because of water retention), weakness and lethargy, darkened skin and muscle cramps. 
• About 50 people a day die of a kidney related disease.

How do you know if you have CKD? 
In most cases CKD does not cause any symptoms and is detected because a test has shown an abnormality. It may be a urine test for blood or protein; an X-ray or scan of the kidneys; or a blood test to measure kidney function. Most cases are discovered by your GP as part of normal care.
How common is CKD?
1 in 9 Australians over age 25 years have at least one clinical sign of existing CKD, such as reduced kidney function or evidence of kidney damage. It is less common in young adults.

In the older person it is more common due to the natural aging of the kidneys. A number of diseases can damage the kidneys such as diabetes, hypertension (high blood pressure) and some inherited conditions.

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KIDNEY DISEASE - WHAT ARE MY TREATMENT OPTIONS?

Sometimes kidney diseases lead to kidney failure which requires dialysis or a kidney transplant to keep you alive when the kidneys have stopped working. Dialysis removes waste products from the blood when the kidneys fail.
Kidney failure occurs in two ways:

Acute Kidney Failure
Sudden drop in kidney function, often short-lived, but can occasionally lead to lasting kidney damage.

Chronic Kidney Disease
More often kidney function worsens over a number of years.

Good news: if kidney disease is found early, medication, dietary and lifestyle changes can increase the life of your kidneys and keep you feeling good for as long as possible.

When you have been diagnosed with Chronic Kidney Disease (CKD) you have lost over one-third of your kidney function. This loss of function has persisted for over three months. It is long-term permanent damage to the kidneys.

Signs and symptoms usually start when the kidneys are working below 40%. Once they are working below 10%, dialysis or a transplant is needed to stay alive.

Living With Reduced Kidney Function
Many factors affect the progress of kidney failure - these are not completely understood. If you have kidney disease it is important to follow your health team's advice to slow down its progress. Refer to our LWRKF handbook to help your kidneys stay stronger, for longer and perhaps delay the need for dialysis.

Appropriate management of Chronic Kidney Disease can help to prevent or delay the progression of the illness to its end stages, when dialysis or transplantation is required to sustain life. Effective management of CKD can also help to control symptoms or side effects, such as high blood pressure, loss of appetite, nausea, tiredness and swelling of the hands, face and feet.

Management of CKD should be done in conjunction with your general practitioner, kidney specialist (if applicable) and allied health team. Management of CKD often involves addressing factors related to nutrition, fitness, medication and mind/spirit. It can also impact on sexuality.

Treatment is a Choice
Learning about kidney failure treatments is an important part of deciding which treatment choice is best for you. Hospitals offer education sessions that give you and your family time to ask questions and talk to others. Some people feel they have to start or continue any treatment offered to them.

Decisions about your body are your responsibility
Your health team can provide the best guidance but you’re the one in control. It is important to get to know your health team and build a strong relationship. Open communication about your physical and emotional health, as well as lifestyle needs, can help you get the most out of your treatment.

Treatment options for Kidney Failure

• Dialysis - removes waste and extra fluid from the blood

• Transplantation - If you start dialysis you will also be assessed for your suitability for transplantation. Health issues may prevent this option.

• Conservative or Supportive Care - If you decide that dialysis or transplant is not for you, then your health-care team will support you to stay as healthy as possible without dialysis. Your life-span however will be limited.

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TREATMENT - DIALYSIS
What does dialysis do? 
Dialysis helps to maintain your body’s balance by removing waste and extra fluid from the blood, keeping the blood’s chemical balance at a safe level and assisting with blood pressure control. Dialysis is a useful and important treatment.

• Haemodialysis
  Uses a machine acting as an artificial kidney cleans the blood. Requires good access to your bloodstream, which may be an issue if you have diabetes. If you have heart problems, changes in blood pressure and waste levels associated with haemodialysis can cause problems.
  
• Peritoneal Dialysis
  Allows the blood to be cleaned inside the body and is usually done at home. PD may not be possible if you’ve had major abdominal surgery causing scarring. It may also be difficult to obtain the right amount of dialysis with PD if you are tall and muscular, or overweight.

 WHERE CAN I DO MY DIALYSIS
- WHAT ARE MY OPTIONS?
You can choose one of two locations to have your dialysis - Home-based Dialysis or Unit-based Dialysis.
Home Dialysis
If you choose to dialyse at home you are trained to manage your own dialysis. There are two forms of Home Dialysis.

• Home Haemodialysis
  Special plumbing is installed in your house and the quality of the water supply is tested. If needed, a friend, carer or partner can be trained to assist. You can choose to dialyse day or night. Go to our new dedicated Home Dialysis website for more information.
  
  
• Home Peritoneal Dialysis
  Peritoneal Dialysis (PD) occurs inside your body using the peritoneal membrane as a filter. This membrane is located in your abdomen (belly). During PD the membrane is used to filter waste products and extra fluid from your blood. A special peritoneal catheter is used to transfer dialysis fluid into and out of the peritoneal cavity.

Unit-based Dialysis

• Haemodialysis Is offered as a hospital treatment when some dialysis patients attend a special dialysis or satellite unit to dialyse for several hours, usually three times a week. Some hospitals offer nocturnal dialysis sessions, which is dialysing while you sleep.

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WHICH TREATMENT SHOULD I CHOOSE?
The choice of treatment is influenced by many factors including:

• personal preference
• your health and medical suitability
• your lifestyle
• availability of resources
• where you live
• finances e.g. travel costs

Medical issues can influence the choice of dialysis. Most people can do both types of dialysis and those with reasonable health may be suitable for transplantation. Your kidney doctor or specialist nurse will advise if you are not medically suited for a particular type of treatment.

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TREATMENT - TRANSPLANTATION
Transplantation is also a form of treatment for kidney failure but it is not a cure. If you start dialysis you will also be assessed for your suitability for transplantation. Health issues may prevent this option.
Kidney transplants are very successful. Over 94% of transplants are working one year later. The average wait for a deceased donor kidney is about 4 years.

Staying fit and as healthy as possible helps you remain suitable for a transplant and aids your recovery. It is a good idea to have regular health and dental checks as well as maintaining your:

• recommended fluid and dietary restrictions   
  • excellent animation on how fluid balance in the body works (UK KidneyPatientGuide)
• ideal body weight for your age and size - people who are overweight are at increased risk of problems during surgery
• dialysis schedule
• regular fitness or exercise plan

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CONSERVATIVE OR SUPPORTIVE CARE
Some people choose no active treatment, known as conservative or supportive care. It is also sometimes referred to as palliative care. Without transplant or dialysis to replace kidney function, progression to end of life will occur. If you decide that dialysis or transplant is not for you, then your health-care team will support you to stay as healthy as possible without dialysis.
If you choose conservative care a doctor still manages your medications and general health, but this will limit your life-span. You will continue to see your health care team and maybe a palliative care team as well. The palliative care team supports you and your family to live as independently and comfortably as you can in the face of serious illness.

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THE FUTURE - STEM CELL TREATMENT?
Stem Cell Treatment from Dr Sharon Ricardo of the Australian Stem Cell Centre>

Dr Ricardo's advice is:
"currently the only proven treatments offered involving stem cells are for the treatment of some blood and auto immune diseases. Treatments involve either bone marrow or cord blood, such as a bone marrow transplant for leukaemia. Other stem cell based therapies are still in research phase or in clinical trials. Clinical trials are essential to ensure treatment is proven, safe and effective, before widespread use in patients. Many treatments offered by overseas organisations do not appear to have undergone any clinical trial process and therefore we cannot know if they are safe or if they even work."

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WHAT IS KIDNEY DISEASE?

Kidney disease occurs when the nephrons inside your kidneys, which act as blood filters are damaged. This leads to the build up of waste and fluids inside the body.
Why are your kidneys so important?
Kidneys are the silent partner to good health! We can live quite well with only one kidney and indeed, some people live a healthy life even though born with one missing.
Our kidneys are amazing, they play a major role in maintaining your general health and wellbeing but are not usually thought of as essential to a healthy life. But while bones can break, muscles can waste away and the brain can sleep without risk to life, if both kidneys fail, as happens in end stage kidney failure, bone, muscle or brain can not carry on.
What can go wrong with your kidneys?
Kidney disease is called a silent disease as there are often no warning signs. More often kidney function worsens over a number of years.

This is good news because if kidney disease is found early, medication, dietary and lifestyle changes can increase the life of your kidneys and keep you feeling your best for as long as possible.

• You can lose up to 90 per cent of kidney function without realising it, by which time it is almost impossible to prevent further serious problems.
  
• People can live a near normal life with as little as 20 percent of their total kidney function.
  
• When symptoms do occur the initial signs may be general, such as feeling tired or generalised itching.
  
• As kidney disease progresses, the symptoms can include changes in the urine (reduced volume, discolouration, blood or pus), nausea and vomiting, and appetite loss.
  
• Other symptoms include swollen or numb hands and feet (because of water retention), weakness and lethargy, darkened skin and muscle cramps.  

Acute Kidney Failure is sometimes kidney failure which can happen quickly, caused for example by a sudden loss of large amounts of blood, infection, or an accident. A sudden drop in kidney function is often short lived but can occasionally lead to lasting kidney damage. 
Chronic Kidney Disease (CKD) is responsible for substantial burden of illness and premature mortality. If you lose over 1/3 of your kidney function for over 3 months, it is called Chronic Kidney Disease (CKD). Sometimes kidney disease leads to kidney failure, which requires dialysis or a kidney transplant to keep you alive. As kidney function decreases, waste begins to build-up in the blood.
How can I avoid kidney disease?
You can reduce your risk of kidney disease especially if you are at increased risk:

• become a non-smoker
• ensure your blood glucose is well controlled if you have diabetes
• control your blood pressure
• stay fit, exercise regularly and maintain a healthy weight by eating a healthy diet
• avoid high salt foods and reduce salt intake wherever you can
• drink water - instead of sugary drinks
• drink alcohol moderately (no more than 2 standard glasses a day for men -1 standard glass for women)

 WHAT ARE THE STAGES OF CHRONIC KIDNEY DISEASE?
Test results or clinical values can be grouped to show how well your kidneys are working. These groupings are only a guide and results may be outside these ranges. Kidney function may naturally fall as we age. Other factors can also lower kidney function normally.
Kidney function can be classified into stages, depending on your eGFR. Your doctor uses these stages as a guide for deciding which treatment is best for you. Treatment also depends on the cause of your kidney damage. Controlling diabetes and high blood pressure can help to slow or prevent further kidney damage. It also reduces the risk of other health problems, such as heart attacks and strokes.

Stage 1:  A normal GFR greater than or equal to 90 mL/min/1.73m²
Stage 2:  Slightly decreased GFR between 60‐89 mL/min/1.73m²

If your kidney function is at stage 1 or 2, you only have CKD if you have albuminuria, haematuria, a pathological abnormality or a structural abnormality.

Stage 3a:  Mild‐moderate decrease in GFR between 45‐59 mL/min/1.73m²
Stage 3b:  Moderate‐severe decrease in GFR between 30‐44 mL/min/1.73m²

Stage 4:  Severe decrease in GFR between 15-29 mL/min/1.73m²
Stage 5:  Kidney failure as GFR decreases to less than 15 mL/min/1.73m² or dialysis is started

Your eGFR and albuminuria results are combined to provide an overall picture of how well your kidneys are working. Your doctor uses this information to decide which treatment is best for you. Treatment also depends on the cause of your kidney damage. Controlling diabetes and high blood pressure can help to slow or prevent further kidney damage. It also reduces the risk of other health problems, such as heart attacks and strokes.

Image from Kidney Stories - for Indigenous Australians - graphics made available by NT Renal Services

COMMON KIDNEY RELATES TESTS AND PROCEDURES People with kidney disease undergo a large range of medical tests and procedures. Medical tests are an important part of making an action plan to meet your health care needs. They are needed to confirm a diagnosis, plan treatment or check progress. Some of the most commonly used tests for people with kidney disease are outlined here. Also see Kidney Glossary to find out meanings of terms used in tests.
Tests for kidney function and damage
Blood tests

• Estimated Glomerular Filtration Rate (eGFR): the best measure of your kidney function. It shows how well your kidneys are cleaning the blood. Your GFR is usually estimated (eGFR) from the results of the creatinine blood test. 

• eGFR is reported in millilitres per minute per 1.73m² (mL/min/1.73m²)
• A GFR of 100 mL/min/1.73m² is in the normal range so it is useful to say that 100 mL/min/1.73m² is about equal to ‘100% kidney function’ 
• A GFR of 50 mL/min/1.73m² could be called ‘50% kidney function’

• Creatinine: a waste product made by the muscles. It is usually removed from the blood by the kidneys and passes out in the urine. When the kidneys aren’t working well, creatinine stays in the blood. Creatinine varies with age, gender and body weight so is not an accurate way of measuring overall kidney function. When on dialysis creatinine levels are always high.
  
• Urea - a waste product, which is made as the body breaks down protein. High urea levels suggest decreased kidney function.

Urine tests

• Albumin Creatinine Ratio: used to measure the amount of albumin (a kind of protein) that leaks into your urine when your kidneys are damaged. A small or ‘micro’ amount of albumin in the urine is called microalbuminuria, and a larger ‘macro’ amount is called macroalbuminuria
  
• Urinalysis: an examination of a urine sample to detect medical conditions like kidney and liver disease, diabetes and urinary tract infections. This can be a visual examination for colour and clearness. For example, blood in the urine (haematuria) may make urine red or an infection can make it cloudy. A chemically treated strip or dipstick is used to test for pH, sugar (glucose), blood, bacteria or waste products. A urine sample can be sent to a laboratory for an examination under a microscope or to grow a culture if an infection is suspected.

Blood tests for diabetes

• Glucose: blood glucose monitoring is a measurement of glucose (sugar) in the blood. Values can vary depending on physical activity, meals and insulin administration. Your glucose level is raised in diabetes.
• Glycosylated haemoglobin (HbA1c): test that measures the amount of glycosylated haemoglobin in the blood. Glycosylated haemoglobin is a molecule in red blood cells that attaches to glucose (blood sugar). There are higher levels of glycosylated haemoglobin if you have more sugar in your blood.

Tests for heart health

• Blood pressure: the pressure of the blood against the walls of the arteries as the heart pumps the blood around your body. Blood pressure is recorded as two numbers, for example 140/90 mmHg. The larger number indicates the pressure in the arteries as the heart squeezes out blood during each beat. This is called the systolic blood pressure. The lower number indicates the pressure as the heart relaxes before the next beat. This is called the diastolic blood pressure.

Blood tests - Cholesterol

• Cholesterol: a naturally-occurring, waxy substance made by the body.  It is an essential building block of cell membranes, hormones and vitamin D. Too much cholesterol in the blood can cause clogging of the arteries and lead to heart disease.
• Low-density lipoprotein (LDL) cholesterol: known as the “bad” cholesterol. The higher the amount of LDL cholesterol, the higher the risk of heart disease.
• High-density lipoprotein (HDL) cholesterol: known as the “good” cholesterol. The higher the amount of HDL cholesterol, the lower the risk of heart disease.
• Triglycerides: the most common type of fat stored in your body. A high level of triglycerides in your blood can increase your risk of heart disease.

Blood tests for vitamin and mineral levels

• Potassium (K+): a mineral found in many foods.  If your kidneys are healthy, they remove extra potassium from the blood.  If your kidneys are damaged, the potassium level can rise and affect your heart.  A low or high potassium level can cause an irregular heartbeat.
• Sodium (salt, Na+): a substance which together with chloride makes up common salt. High levels of sodium may indicate dehydration.
• Calcium (Ca): needed for healthy bones and teeth. Most of the cells in the body need calcium to work properly. Raised calcium levels may cause headaches, nausea, sore eyes, aching teeth, itchy skin, mood changes and confusion.
• Phosphate (PO4): a mineral, which together with calcium keeps your bones strong and healthy.  Too much phosphate causes itching and pain in the joints, such as the knees, elbows and ankles. When the kidneys are not functioning properly, high levels of phosphate accumulate in the blood
• Vitamin D: a vitamin that is made in your skin after you have been in the sun. The kidneys change Vitamin D so that your body can use it.

Tests for anaemia

• Haemoglobin (Hb): the oxygen-carrying part of red blood cells that gives them their red colour and transports oxygen around the body.
• Haematocrit (Hct): a measure of the percentage of blood made up of red blood cells.
• Transferrin saturation (TSAT): indicates the proportion of the iron-transporting protein transferring and helps to determine if the body is transporting or binding iron in the right way.
• Ferritin: a protein that stores iron in your body.

Tests for hormones

• Parathyroid hormone (PTH): helps control calcium, phosphorus, and vitamin D levels within the blood and bone. Kidney failure can cause the parathyroid glands to produce too much PTH.

Imaging tests

• X‐rays: uses very short energy beams to produce an image of body parts such as bones and organs.
• Ultrasound: Examination of the kidneys, prostate or bladder using sound waves to outline the structure of organs.
• Computerised Tomography (CT) Scan or Magnetic Resonance Imaging (MRI): these tests use multiple small X-ray beams, or radio-frequency wavelengths and a strong magnetic field to provide clear and detailed pictures of internal organs and tissues. You may be asked to swallow a liquid containing a positive contrast material or ‘dye’, which allows the radiologist to see the kidneys more clearly.
• Kidney biopsy: a procedure where a needle is passed through your skin into the kidney and a small piece of kidney tissue is removed for examination under a microscope. Local anaesthetic is used and it is a relatively painless procedure.
• Fistulagram: used to check fistula function. Dye is injected into your fistula to allow its structure to show up on an x‐ray.
• Cystoscopy: this test uses a thin, flexible, tube-like telescope called a cystoscope to view the inside of the bladder and some parts of the kidney.
• Intravenous Pyelogram (IVP): series of x‐rays of the abdomen taken after dye has been injected into a vein in the arm. The dye is then viewed on the x-ray pictures as it passes through the kidneys

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Your Mind on Chemo

Mentioning chemobrain to a group of cancer survivors is the equivalent of yelling "FIRE" in a crowded theater.

             Yesterday it was impossible to miss the collective shouting
when the Radiological Society of North America (RSNA) announced the
results of a small study demonstrating the physiological process behind
the symptoms that plague so many of us.

             Now there is a scientific explanation behind that freaky
and disabling symptoms that make up the word "chemobrain." While
sometimes used derisively, sometimes jokingly, sometimes teasingly,
there is now no getting around the fact that administering chemotherapy
causes significant and demonstrable changes in brain metabolism.

            Makes sense, you think.

            And it does.  But common sense isn't science; and even those
medical professionals who listened sympathetically to their patients
had little to offer in return.  Part of the answer came in the way the
scientists approached the problem.

            Instead of studying chemotherapy's effect on the brain's
appearance, Rachael A Lagos, D.O., and colleagues at the West Virginia
Univeristy School of Medicine instead looked at its effect on brain function through an analysis of PET/CT brain imaging results utilizing special software.

 

 

             What a difference that made.  The proof was in the scans where "statistically significant decreases in regional brain metabolism" were noted.  Those changes were seen in areas associated with contentration and memory.

             Long story short:  your brain has as much difficulty processing chemotherapy drugs as the rest of your body does.



By now you all know that Robert Bazell, heath/science correspondent and author of The Making of Herceptin covered the story for NBC Nightly News and a crew came to talk with me yesterday morning about my chemobrain experience.

             My experience may have been different from yours.  Mine may
have lasted longer. You may have had sypmtoms that disappeared
overnight.  I don't know how much of the cognitive problems I
encountered can be attributed to chemo or simply the totality of
treatment --  radiation, multiple surgeries, and tamoxifen, the ultimate
in brain scrambling medications.  But I don't need a study or PET/scan
of my brain to say that definitively about Tamoxifen.  After seeing this
short and doable demonstration from a radiation resident (the RSNA
study was a poster session, mind you) from just ONE aspect of cancer
treatment is more than enough for me.

Exercise works for easing chemobrain. Truly does.

Now where we need to go is to continue the discussion on working through the disability.
That's why the crew filmed the additional segments that they did.
 Those weren't random.  Both cycling and quilting were activities I took
up AFTER treatment to help cope. There is no doubt that physical
exercise, intense aerobic activity, is one of the best possible things
you can do to cope with chemobrain, fatigue, and regain strength and
vitality.  Taking up quilting involved learning a compelte new set of
tasks, and yes, not seriously injuring myself or anyone else when using a
rotary cutter.  A third way to help anyone suffering cognitive
impairment would be assistance with organizational skills.  Anyone who
knows me and looks at my waning organizational skills can attest to
that. A good text on ADD probably woundn't hurt either.  Stress
management is also key.

Quilting is
something I took up after cancer treatment....it's soemthing creative
and stress managment all in one. Here I'm using English paper piecing of
3/4" hexagons. There's no way to machine piece them accurately.

With Debbie Strauss of NBC News.

          When I watched both the broadcast and web footage last
night  I was reminded that for many of us, the cancer itself wasn't a
problem but recovering from treatment WAS.  While we were talking
I told correspondent Debbie Strauss that during those difficult months I
remember staring at a blank piece of paper trying to write a simple
paragraph.

           A paragraph.  Something I used to do in my sleep.  Something I
could do upside down or inside out.  No, writing a paragraph has never
been the same.  But never has the sense of accomplishment carried such a
sweet ring, either. And that will always be enough.





More where this came from:

Reserarchers Find Evidence of Chemobrain

Healing from ChemoBrain Gradual



BoingBoing: Chemobrain....Isn't All in Your Head



Great blog on chemobrain  AnneMarie Ciccarella and this recommendation: Your Brain After Chemo, by journalist Idelle Davidson.

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Women with Cancer: Is Metastatic Breast Cancer on the Rise in Young W...

Is Metastatic Breast Cancer on the Rise in Young Women?

Something long noted in breast cancer circles was study coming out today in the Journal of the American Medical Association that
found a very small, but statistically significant, increase in the
number of young women between the ages of 25 to 39 who are diagnosed
with metastatic breast cancer.  

The change
noted comes down to an absolute increase of 1.37 women per 100,000 women
over 34 years, or approximately 2 percent per year. The same increase
was not noted in older women and was consistent across all ethnic and
socioeconomic groups.  One surprise is that there was a more pronounced
increased in women with hormone sensitive breast cancer, rather than ER-
cancer. 

Why this is
happening is yet to be determined and was not the purpose of the study.
We are left with more questions than answers.  

Studies are often complicated, and this one, a retrospective, observational analysis of three different
sets of incidence and survvial rates from the US Surveillance,
Epidemiology and End Results (SEER) program at the National Cancer
Institute from l976 through 2009 - even more so. The collection of SEER
data began in l973, yet the study years ran from 1976 - 2009.  Even the
largest data set used, SEER 18, only comprises 28 percent of the US
population.  SEER 9, by comparison, only includes 9.5% of the
population, and the third set, SEER 13, 15 percent.  

Study author
Rebecca Johnson, MD, Seattle Children's Hospital and University of
Washington, wrote in the study that, "Whatever the causes - and likely
there are more than 1 - the evidence we observed for the increasing
incidence of advanced breast cancer in young women will require
corroboration and may be best confirmed by data from other countries.
 If verified, the increase is particularly concerning, because young age
itself is an independent prognostic factor for breast cancer."

Vast
improvements in diagnostic imaging between 1976 and now, staging
work-ups and other factors come into play.  "The changes noted may be
multifactorial," said Jennifer Litton, MD, of The University of Texas MD
Anderson Cancer Center, "with changes in rates of incidence and younger
women having more aggressive underlying biologies  coupled with
potentially other genetic factors. What is much more clinically
important than this would be changes in overall survival."

Breast cancer
advocates concur. "These numbers do not change it for anyone who dies of
this disease today," said Joy Simha, co-founder of the Young Survival
Coalition. "We need to focus on finding the cause of breast cancer so we
can make change happen."

Another aspect
confirms what was discussed in last night's #BCSM discussion. "What the
study enforces to me is the need for all young women to be aware of
changes and to be proactive about their health," said Deanna Attai, MD,
breast surgeon and #BCSM comoderator.  "Doctors need to be educated that
there's no such things as "too young for breast cancer." No such
thing."

For women with
breast cancer today?  Nothing changes.  If you're in treatment today?
Nothing changes.  But if you're watching the larger picture of cancer
incidence in the United States in a population that already suffers
unduly from a breast cancer diagnosis?  Heads up.  This is a signal we
need to heed. 

#   #   #

3/3/2013:
 Comments from Ann Partdridge, MD:  breast medical oncologist from the
Dana Farber Cancer Institute in Boston and medical advisor to the Young
Survival Coalition: 

It
is not clear from the study "whether the overall rate of breast cancer
in young women is actually increasing," said Ann Partridge, MD, a
medical oncologist from the Dana-Farber Cancer Institute and Harvard
Medical School in Boston, Massachusetts. In other words, the study does
not indicate whether the increase in advanced disease means that there
is an overall increase in disease in young women.

That is
important because other studies using SEER data have indicated that the
rate of overall disease is stable in young women, said Dr. Partridge.

She pointed
out that Dr. Johnson and colleagues found that the rates of localized
and regional disease held steady in young women. Therefore, because they
found an increase in advanced disease, thereshould be an overall increase in young women, she said.

However, the
researchers "did not show/discuss data on overall rates of breast cancer
in young women," Dr. Partridge wrote in an email. This omission,
combined with the fact that the study findings might be in conflict with
findings from other studies using SEER data, "leads me to wonder about
the article," she said.

Check out the rest of the article and others: 

From Liz Szabo, USA Today:  "Deadly Breast Cancers are Rising in Young Women"

From the NYTimes:   "Study Finds More Breast Cancer at Young Age"

From NPR:  "Younger Women Have Rising Rate of Advanced Breast Cancer Study Says" 

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Survivorship Guidelines. For real.

Survivorship Guidelines. For real.

 

 

Late last week the National Comprehensive Cancer Network (NCCN), a nonprofit alliance of 21 comprehensive cancer centers, announced its first ever set of clinical practice guidelines for survivorship care.

     There are
some 13.7 million cancer survivors in the United States alone. Of those,
2.9 million are breast cancer survivors. All of us have found our way
through those first difficult months and years following diagnosis.
Treatment itself was one thing. Trying to adjust to life after cancer
was another.

      But by any measure the guidelines are good news for any man or woman in treatment now. The 100-page report covers eight distinct areas:

• anxiety and depression
• cognitive function
• exercise 
• fatigue
• immunizations and infections
• pain
• sexual function 
• sleep disorders. 

         
 Standards for evidence-based survivorship care are only being developed
now. The first conference on survivorship science as an entity in and
of itself did not take place until 2003. In 2004, the CDC and Livestrong
published "A National Cancer Action Plan for Cancer Survivorship,"
which included the simple, yet powerful recommendation to establish an infrastructure
for a comprehensive database on cancer survivorship. I don't know if
that has transpired.  While that sounds smart to me, making smart things
happen is not one of the hallmarks of our framented health care system.  

           Then as most of you know, in 2005 the Institute of Medicine published its landmark consensus report Lost in Transition, which made the case for survivorship care. Six years later Livestrong
held a collaborative symposium of stakeholders, health care
professionals and advocates to begin a consenus building project to
articulate the "essential" elements in surivorship care. 

            A
later IOM report, "From Cancer Care for the Whole Patient: Meeting
Psychosocial Health Needs," recommended that psychosocial screening be
part of quality cancer care.  This is well covered in NCCN guidlines but
why other concepts from Lost in Transition and Elements
didn't become part of NCCN's report aren't clear, even though both
reports are mentioned. NCCN surivorship care guidlines, for example,
don't even support the need for a survivorhip care plan or treatment
summary. While we all understand that there's no economic incentive in
place for this let's get serious. A one page print out is not rocket
science. Both "Lost" and "Elements" stress the need for education - of
providers and patients - and coordination of care. NCCN's guidelines
don't venture that far.

            NCCN's guidelines are
directed at professionals. How this material will make its way from the
nation's 21 comprehensive cancer centers to the community setting,
where the majority of women are seen, is not explained. Color me
skeptical but I see a packet of information stacked on an oncologist's
already stacked desk. Neither were there any outside patient advocates or
organizations on the committees as listed in the report. This makes no
sense to me. You'd think that patient advocacy networks would be tapped
for their assistance and guidance in moving this material to where it
needs to be. Let patients know and let them help. No one is more invested in assuring the provision of good survivorship care than we are. 

          A few other take-aways to the report:

• at least
  50% of (all) survivors suffer from some late effect of cancer treatment.
  The most common problems seen are pain, depression and fatigue.
• anxiety and
  depression affect up to 29 percent of all survivors; and some 19% meet
  the diagnostic criteria for post-traumatic stress syndrome.
• the
  increasing trend toward more treatment, combined chemo, radiation,
  hormone therapy and surgery can result in more late effects. One example
  was the study from last week on increased of heart disease for women
  receiving radiation therapy.

         
Believe me, I am far from done with this topic. Sometimes It seems the
more we do to treat - not cure - cancer - the more potential for
problems there are down the road.  We can't go back and undo treatment
we selected, decisions we made when faced with a difficult, confounding
disease. I do believe we can do a better job with survivorship though,
and these guidelines are one place to start.

          I
hope you'll take a look at the report. You will need to establish an
account but you can access the material by registering with your email
address here:

       

#   #   #

Interesting
note:  I just saw a news release from NCCN announcing that two
additional cancer centers have been added to their network.  They are UC
San Diego Moores Cancer Ceneter and University of Colorado Cancer
Center.

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Women with Cancer: Cancer: Round Two

Women with Cancer: Cancer: Round Two: This is how things change. On Tuesday, April 9 we celebrate DH's (darling husband's) birthday with an extravagant dinner with f...

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Cancer and My Marriage

Note: Ask any survivor about
side-effects or working with an oncologist and you’ll receive a
notebook’s worth of helpful information. Ditto for managing cancer on
the job or with children. But ask them about their relationship and
you’re apt to hear variations on this theme, “He never blinked,” or “He
really showed me how strong a man he truly is.” In other words, you’re
not apt to hear what it’s truly like for some women. While we celebrate
relationships where love’s better nature rules, it’s also time to
honestly share the kind of stress cancer and its associated treatment
brings to many two-income families where jobs, children, carpools and
chemotherapy all need to be balanced in the course of a day. I was asked
by a woman whom I admire to publish this essay here. It is my honor to
do so.

 --- Jody Schoger

I never thought I would write an anonymous blog post.

Nonetheless, here I am, writing
about cancer’s impact on my marriage after my late-night Google searches
only yielded stories of marital triumph, replete with images of the
devoted spouse proffering a tender kiss on his partner’s bald head. My
hope is that the next despondent, lonely cancer patient might feel a
little less crazy reading my story

I love my husband and do not want to be disloyal to him. I will remain strategically vague on some details and alter others to shield
my family’s privacy. We have had the kind of marriage people say they
can bet on. Single friends confess that they hope to find a partnership
like ours. Obviously, things are always messier on the inside, but we
undoubtedly share a strong love for and commitment to one another.

When I was diagnosed we’d been
married with children for more than a decade. Like every couple we had
our strengths and weaknesses. We were strong in the communication
department, which allowed us to navigate the transitions of parenthood,
moves and job changes.

Even with these strengths at our
disposal, nothing challenged our relationship like my cancer diagnosis. I
was in treatment for almost a year, with follow-up drugs and surgeries
that impacted my quality of life for a prolonged long period of time,
far longer than either one of us expected. I had chemo, a mastectomy and
radiation which was then followed by a series of reconstructive surgeries. All the while, I held down a job, tried to help raise my children and hold things together.

Our marital glue was communication,
adventure, and sex. Chemobrain wiped out my ability to communicate,
especially about emotional issues. Strong emotions made me queasy, leading
me to shut down even more. Also, my forgetfulness was a constant source
of frustration to my husband, who came to treat me like one of the
children, nagging and cajoling me.



The painful truth was that he
wasn’t totally off-base in doing this. He had to keep the household
together, and I was falling apart. As for adventure, it is hard to be
spontaneous when you are immunocompromised, nauseated and unprepared for the undertow of fatigue that can pull
you in and wipe you out. And of course, our sex life was horribly
disrupted. Given the length of our relationship and the presence of
children, we were surprisingly regular in our sexual activity. Chemo
brought on chemical menopause; the mastectomy took away a critical
erogenous zone and left me with profound loss of body confidence.
Radiation, for me, was painful and a complete energy drain. All this
together is the opposite of sexy.

I have read accounts of the
sympathetic, supportive husbands who wait patiently for a partner to
heal. My husband was like this probably two-thirds of the time. But he
is only human. All the things I couldn’t do he did ... from driving
carpools, cleaning the house, doing laundry, communicating with
teachers, mediating sibling spats, and tween-age drama. He was holding down his own job, and could only watch as the little energy I had energy my went to my work. By the time I arrived home I was completely spent and totally unavailable emotionally or sexually.

Plus my bitterness at the length of treatment grew as the months dragged on. If it had been a month or two, I
think we could have endured it and come out relatively unscathed. But
this has gone on for years. Not only was this ordeal loosening our glue,
but the
friction points of marriage – the ways we see things so differently ––
began to push us further apart. Because of my limited energy and
concentration, we couldn’t have one of our major realignment
conversations that used to bring us back to a place of mutual
understanding and respect about our differences. Add to this mix the
financial strain of decreased income and increased expenses. A chunk of
my income comes from freelance work, which was now off the table because
of my illness. Even though we have good insurance, I was stunned at how
quickly medication co-pays and deductibles added up to big numbers.
Money is the source of conflict even in stable situations and we began to argue about purchases that never were an issue before.

Eventually we hit several crisis points. There were the periodic pity parties my husband had about his utter deprivation, emotionally,
physically and sexually. It was a stretch for me to comfort him, since
he was basically right. Guys really don’t reach out to other men when
they are vulnerable. Where I am sure my girlfriends would have rallied
to my side had our roles been reversed, he was left basically alone.
None of our extended family members live near us. There wasn’t a
grandparent, an aunt or even a cousin to give him a break for any length
of time.  Nor did it help our
bond that he was petrified at the idea of actually losing me. At his
lowest moments, he would vacillate between his frustration with my
helplessness and the terror of my possible death. He
told me through tears one day, "I can't stand that the one person I
want to talk about all this with is you, and you are really not really
able to talk."

Another crisis came after my
treatment was over and I started to regain my cognitive and physical
energy. It would no longer do for him to treat me like his other child.
But it takes more than a simply saying, “Mom’s back in business.” The
children had learned that Dad was the Real Parent in the house, an idea
reinforced by the ways he would second-guess my authority as a mother.
It was difficult to stand up to this. How do you stake a claim to your
authority when you are not the same in memory, strength, or energy? I
confronted him about this. To his great credit, he has worked with me to
rebalance our parenting team, with the understanding that I am still
not 100 percent. Regaining authentic balance in our partnership remains an ongoing challenge.

Our sex life is on the mend but is
still a source of strife. I have not figured out how to feel comfortable
naked, with all the scars riddling my torso and the false breast that
feels numb and dead. My energy remains unreliable. At night, once the
dishes are washed and the children tucked in, I often want to crawl in
the bed to sleep. We are trying to be more deliberate about carving out
time for ourselves and our relationship, but it is so hard. So, so hard.

There is a lot of talk in the
cancer world about survivorship plans for patients. What I really need
is a survivorship plan for my marriage. In my support group, I see a lot
of people getting divorced after the crisis of treatment subsides.
These wounds cut deep, touching our greatest insecurities. Luckily, I do
know a handful of survivors whose marriages did recover. I just wish I
had more of a roadmap for how to steer my marriage toward success and
away from the potential disaster.

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