Survivorship and Late Effects of Cancer

Many cancer patients will complete their primary treatment and return, more or less, to the same level of health and wellbeing that they enjoyed before their diagnosis. But a significant proportion will experience a wide range of distressing long-term problems, such as bowel or urinary incontinence, crippling fatigue or sexual difficulties. Some will face an increased risk of heart or bone problems, a second cancer, or other health conditions that may not emerge for many decades. And the consequences of cancer and its treatment can affect much more than just a person’s physical or mental health. Some patients become isolated from friends or family, or are unable to continue working, causing financial difficulties as well as further isolation. For these patients, a cure comes with a heavy and often unexpected cost.

Surviving cancer or “survivorship” can be defined in different ways. Two common definitions include:

  • Having no disease after the completion of treatment,
  • The process of living with, through, and beyond cancer. By this definition, cancer survivorship begins at diagnosis. It includes people who continue to have treatment to either reduce risk of recurrence or to manage chronic disease.

The day cancer treatment ends, a new chapter begins. Some survivors may leave cancer behind and continue life with few or no health problems. Others might have ongoing physical challenges. Some of these might be due to late effects (also called after effects) of cancer treatment.

Late effects vary from one cancer survivor to the next. They can range from very mild to serious. Medical experts can’t always predict if or when they will occur. Some effects might improve or go away with time such as anemia. Others might be permanent such as certain types of nerve damage. If late effects of treatment do occur, it doesn’t mean that your health care team did anything wrong. In most cases, the effects could not have been avoided.

Consequences of Cancer and its Treatment

Cancer treatment is often invasive and can have both short and longer term consequences, some of which may arise several years or decades after treatment was administered.

 ‘After I was diagnosed with womb cancer in 2011, I found it exceptionally difficult to get information on how the treatment might affect my future sexual relationships. I experienced a range of side effects from pelvic radiotherapy, including hot flushes and premature menopause, and for several months afterwards I wasn’t able to have an orgasm. Before I was diagnosed I felt comfortable talking about sex, but having cancer changed that. It made me suddenly very protective of my sexual identity and of my body, and I found it a very isolating experience.’ Victoria 42, south-west England.

Our service wants to address 3 key areas

1. Identifying the Problem

We want to improve and apply our knowledge about the scale and nature of consequences of treatment in our locality. We are planning on sending out questionnaires to audit how many of our patients are experiencing long term effects after cancer treatment.

2. Empowering Patients and Influencing Healthcare Professionals

We shall improve education and awareness of consequences of treatment amongst patients, carers and professionals

3. Developing services

We shall evaluate and promote practical changes to NHS services so that people with consequences of cancer or its treatment get the specialist help they need

Our current priority is cancers of the pelvic area, due to the significant numbers of people affected, and the severity of effect on some people’s quality of life.

SMALL BOWEL BACTERIAL OVERGROWTH

Some of your symptoms may be caused by small bowel bacterial overgrowth. This leaflet explains what it means and how it can be treated.

In healthy people, very few bacteria are able to survive in the upper small bowel. This is usually a fairly sterile area. Nearly all bacteria living in the gastrointestinal tract live in the colon (large bowel). They have a very important role here, helping with the digestion of food.

When we eat we rely on coordinated muscular contractions of our digestive system. This moves food slowly through our gastrointestinal tract, where it is digested and absorbed. These contractions are also very important for keeping the bacteria within our colon. They prevent them from growing upwards in large quantities through our small bowel.

However in some people, patterns of muscular contractions of the small bowel can be changed. This is often permanent. Bacteria can then multiply and live within some or the entire small bowel. This is called ‘bacterial overgrowth of the small bowel’. When the bacteria in the upper small bowel reach high enough numbers, they start to cause symptoms.

What causes small bowel bacterial overgrowth?

Historically it has been known that IBS, Crohns, Chronic pancreatitis can all have SBBO. More recently it has been proven that radiation therapy that involves the pelvic area (such as for bowel, gynae, prostate cancer or total body irradiation for bone marrow transplant), certain Cytotoxic agents and gut surgery all can cause long term damage to the bowel. This damage is now known to penetrate to the stem cells and so result in life long damage.

What are the symptoms of small bowel bacterial overgrowth?

The most common symptom is diarrhoea. Sometimes the loose stool appears greasy and pale because the bacteria interfere with the absorption of fat in the diet. However, bacterial overgrowth can also cause excessive flatulence (wind), bloating, constipation, pain, nausea and vomiting, fatigue and headache.

How does the breath analyser diagnose possible small bowel bacterial overgrowth?

The exhaled breath of human beings contains over 2000 different substances. Other than breathing the lungs have a further essential function which is to excrete volatile substances. The lungs have been recognised as excretory organs for gasses that are dissolved in the blood. Often, the exhaled gases originate from the metabolism of intestinal bacteria.

Certain bacteria prefer to metabolise sugar molecules. These are broken down into compounds which include short chain fatty acids, hydrogen, carbon dioxide and methane. A large part of the carbon

Dioxide remains in the intestine and leads to symptoms of bloating. Short chain fatty acids cause water to be absorbed into the intestines, leading to diarrhoea. The hydrogen and methane generated in the intestines crosses the intestinal wall and ends up in the bloodstream where it is transported to the lungs.

Here it is excreted as part of exhaled breath and can be measured easily. The concentration measured in exhaled air is always a reflection of the mass of bacteria in the intestine. The time at which the hydrogen & methane rises during a breath test gives an indication as to the part of the intestine where the bacteria are active. Some people excrete more Methane than Hydrogen and some people are actually non-hydrogen secretors.

How is Small bowel bacterial overgrowth treated?

Some broad spectrum antibiotics, used for 1 or 2 weeks may get rid of symptoms. If they are helpful, most patients notice a benefit within a few days of starting treatment. You may need to try a couple of different antibiotics before we find one which works.

Sometimes symptoms may disappear but they can return at any time after the antibiotics stop. This could be from a few days to many years later. This is because the underlying cause of the bacterial overgrowth has not gone away. If symptoms return then further use of antibiotics can help again.

In some patients their symptoms regularly return. Taking antibiotics a few days each month or continually in a very low dose may be helpful.

Probiotics, prebiotics and diet.

Probiotics are live bacteria which people can take in drinks. These drinks can increase the number of ‘good’ bacteria in the bowel and reduce the number of ‘bad bacteria’

Prebiotics are the food that the ‘good’ bacteria need to survive and grow. They are usually available in tablet form.

There is further research needed to conclude how beneficial these supplements are in the treatment of SBBO.

Some studies do show that probiotics can reduce some of the low grade inflammation in the gut.

Prebiotics, are however fermentable food for bacteria and there is a thought that they might exacerbate symptoms during active bacterial overgrowth.

Meal Spacing

Spacing meals 4 to 5 hours apart and ingesting nothing other than water, allows the small intestine to be ‘swept clean’ of bacteria at night and between meals. This has been shown to be helpful in some cases.

Low Fibre Diet

Some diets have been shown to help with decreasing bacterial load and the fermentation of carbohydrates, also with aiding tissue healing. They do this by eliminating all grains, starchy vegetables, lactose and sweeteners other than honey.

These diets are followed by many Crohns and IBS sufferers.

There is separate information should you wish to find out more about this approach and a ‘fibre quizz’, to demonstrate if you do have too much fibre in your existing diet. You should always talk specialised diets through with a medical professional.

Preparation Instructions for Hydrogen Breath Testing

Read these instructions carefully at least four weeks before your test.  Failure to follow these instructions can lead to false results.

The hydrogen and methane breath test is simple, painless and non-invasive.

With the best of intentions we can all have memory lapses. If you accidently fail to follow the pre-test instructions we would ask that you phone to re-arrange your appointment. The baseline pre-test is highly sensitive and will flag up if the preparation is inadequate and at this point the test will be aborted. This is a waste of everyone’s time.

Please arrive for your appointment on time

On the day of the breath test you will be asked if you have observed the patient preparations, such as proper fasting and avoiding certain medications and medical procedures prior to the test. This is to ensure accurate and reliable results.

If your baseline reading is high, it might indicate that the proper restrictions have not been followed.At this point we may need to stop the procedure and arrange for a re test at another date.

A baseline reading will be taken using highly sensitive specialized breath collection bags. Following the baseline reading you will be given a liquid sugar drink, such as lactulose, fructose, lactose or glucose. Breath samples will then be collected every 20 minutes for a period of up to 3 hours, and the levels recorded on your result sheet.

You may wish to bring reading material, laptop, etc. to occupy your time. You may resume your normal diet immediately after your test. You may experience certain gastrointestinal symptoms as a result of your test, such as bloating, flatulence, or in less common cases, bowel motions. You will be asked to report these symptoms as they occur throughout the test time. Side effects are not expected.

At the conclusion of the test your results will be interpreted and a summary of results and recommendations will follow.

Further advice at this point will be given.

Test Preparation

You must follow these instructions before each test to ensure accurate and reliable results. This will be verified on the day in order for your test to proceed. Patients who do not follow these instructions may be refused testing or may have to reschedule.

4 weeks before your test

  • NO Oral and IV Antibiotics.
  • No Probiotics, unless you have been taking them daily for more than 3 months.
  • Skin creams, eye and ear drops are OK.
  • NO Colonoscopy or Barium Meal Enema procedures.

1 full day before your test:

  • AVOID Milk and Dairy Products. – Lactose-free milk, soy milk, and rice milk are
  • AVOID Canned Fruit and Honey.
  • AVOID Fruit Juice, Soft Drinks, Sports Drinks and Alcohol.
  • AVOID High Fibre Foods (e.g. beans & legumes, bran, oats, garlic, cabbage, onions, leeks, pickled vegetables)
  • NO Fibre Supplements
  • NO Laxatives.

We recommend a meal containing rice and meat the evening before your test

FAST from 8pm the night before test:

You may continue to drink plain water leading up to the test.

On the morning of your test:

  • NO Smoking and Continue to Fast.
  • Brush your teeth thoroughly
  • Do not use denture adhesive
  • You may take your usual medication but not laxatives, antibiotics or vitamin/mineral supplements
  • Continue to take your normal medication with plain water.
  • Refrain from physical exercise for 1 hour before your test.
  • You may wish to bring reading material, laptop, i-pod, etc. to occupy your time

At the time of the test

  • You will need to sit still for 1 minute prior to baseline test
  • Do not take a deep breath; just hold your natural breath for 15 seconds.
  • You will then be asked to blow that breath into the bag.
  • It is important that you are in the same sitting position at each breath test
  • It is important that whilst you may walk around you do not overtly over do things as physical activity can distort the test
  • After the baseline test and once they have shown a result that indicates correct preparation has occurred, you will be asked to drink exactly 250ml of tap water plus the solution to be tested (usually Lactulose) as the concentration of the solution is important.
  • You must swallow the drink in one go.
  • You must not drink or eat anything during the time you take your test.

General Advice on foods to eat

            Breakfast Cereals

Corn Flakes

Rice Krispies

Oats/porridge (can be made with water or lactose-free milk; no honey).

 

            Dairy

Lactose free milk (Lactofree),

Rice milk (Rice Dream or Provamel),

Oat milk (Oatly Oat Drink)

Soy milk (Alpro original brand only)

Lactose free yoghurt (Lactofree plain)

 

            Starchy Foods

Rice (white or brown)

Rice noodles (e.g. vermicelli)

Polenta

Quinoa

Gluten free bread / rolls / bagels / pita (All bread stuffs must be gluten free).

 

            Meats/Meat Alternatives

Beef, Lamb, Pork, Chicken,  Duck, Turkey

Ham, bacon

 

Fish

Tinned tuna, salmon or sardines in water, oil or brine

 

Egg

Tofu

You may have any amount of the above , grilled, pan fried, baked, steamed or boiled

 

            Snacks

Plain corn crackers (unflavoured)

Plain rice cakes (unflavoured, e.g. supermarket own brand, Kallo rice cakes)

Plain oat cakes (e.g. plain Nairn)

Quaker Snack-a-Jacks rice cakes (salt and vinegar only)

Marmite rice cakes

Salted nuts/peanuts

Salt/Pepper

Fresh/dried herbs e.g. Parsley, oregano, basil, rosemary.

 

DO NOT eat honey, jam, marmalade, preserves, gum, snack bars, protein shakes, chocolate bars or sweets.

 

DO NOT use onion, salad onions, garlic, stuffing, gravy, stock,   pickles, or condiments e.g. Tomato ketchup, BBQ sauce, HP sauce, soy sauce etc.