Download Your bladder cancer diary

Your bladder cancer diary
WA Cancer and Palliative Care Network
Patient information and persons to contact
Your Name
Date of Birth
URMN (Patient Hospital Unit Number)
Address
Phone
Mobile
GP Name
Phone
Address
Urologist Name
Phone
Cancer Nurse
Phone
Hospital
Phone
Treatment Unit
Phone
If you are having problems with your treatment:
In an emergency contact your nearest emergency
department or healthdirect Australia on 1800 022 222.
If you are experiencing any urinary symptoms (e.g. blood
in urine) please contact the number shown here for
further advice:
If you have not received any contact informing you of a
procedure or appointment contact the number shown here
for further information:
1
Introduction
This booklet has been designed by a dedicated team of health
professionals to provide you with information about your disease,
treatment and why it is important for you to have regular check
ups as instructed by your doctor. The booklet also enables you
and those involved in your care to keep track of both treatments
and your ongoing surveillance of your bladder cancer.
How To Use This Booklet
The booklet contains pages where you and your health
professional can fill in your appointments, treatments, and
results. It also contains a section for you to document any
issues you may wish to discuss when you attend the hospital
for appointments.
We encourage you to share the information in your booklet with
your GP in order for them to be aware of treatment plans of
your bladder cancer. You should ensure that the information in
this booklet is kept up to date. Ask your doctor, nurse and other
carers to help fill it out.
Keep this booklet safe and bring it with you with
every appointment relating to the management of your
bladder cancer.
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The bladder
The bladder is like a balloon. It is a muscular organ that collects
and stores urine which has passed down tubes called ureters
from the kidneys. It is located in the lower part of the abdomen
(the pelvis). Urine is expelled from the bladder through the tube
called the urethra when you void.
The bladder wall contains different layers made of different
types of cells. The inside layer of the bladder is made up of
special cells that prevent the waste products in urine being
absorbed back into the blood stream. These cells are called
transitional cells.
Figure 1.
Bladder cancer
The entire body is made of cells which normally grow and
reproduce in an organised manner. Sometimes this process goes
wrong. When cells grow and multiply in an uncontrolled way this
produces a lump called a tumour.
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Tumours are classified as being benign (not cancer) or
malignant (cancer).
When cancer cells first develop they may be contained to the
original site, in this case, the bladder. However, these cells have
the ability to multiply and spread to other parts of the body if
left untreated.
Staging and grading of bladder cancer
Treatment for bladder cancer depends on three things:
1. type of cancer cells
2. stage of the disease
3. grade of cancer cells.
Type of cancer cells:
The most commonly occurring
cancers in the bladder are
transitional cell cancers. This
form of cancer originates
from the cells which line
the bladder and urinary
tract. The other 2 types,
Squamous cell carcinoma and
adenocarcinoma, can occur
but are rare. Carcinoma in situ
(CIS) is a form of transitional
cell cancer that is flat-shaped
and usually confined within
the inner most layers of the
bladder. However this is a high
grade cancer.
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Fat
Muscle
Connective Tissue
Bladder Lining
CIS
Ta
T1
T2
T3
T4
Figure 2.
Stage of the disease:
The stage tells you how far the cancer cells have grown into the
bladder. Figure 2 shows the different stages of bladder cancer.
If a bladder cancer affects only the inner lining of the bladder,
it is known as a non muscle invasive (or sometimes called
superficial) bladder cancer. CIS, Stage Ta and T1 are tumours
that are confined to the surface layers of the bladder lining and
are classed as non muscle invasive cancer. If the cancer has
spread into the muscle wall of the bladder, it is called a muscle
invasive cancer. Stages T2 - 4 are types of cancer that invade
the bladder muscle wall and require different treatment to non
muscle invasive disease.
Grading:
Tumours are given a grade based on how the cancer appears
under a microscope. The grade refers to the aggressiveness of
the tumour as this relates to the speed of growth.
There are 3 grades:
1.Low (Grade 1) is when cancer cells look more like normal
bladder cells which suggest they will not be very aggressive
2. Intermediate (Grade 2)
3.High (Grade 3) is when cancer cells look very abnormal
and grow in a disorderly way. These cells tend to grow
very quickly.
Both grade and stage are factors your doctor will consider when
planning your treatment.
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Treatment for non muscle invasive disease
Your doctor may discuss more than one treatment depending on
your type of cancer.
The most common treatment for non muscle invasive bladder
cancer is the removal using surgical instruments inserted through
the urethra. This procedure is known as Transurethral Resection
of a Bladder Tumour (TURBT). The removed tumour will be sent
for inspection by a pathologist to diagnose the type of cancer
cells and to establish the extent of the cancer. Your doctor and
nurse will be able to explain more about this procedure to you
on request.
Sometimes patients are given medication directly into the bladder
to treat any small non visible areas affected by the cancer and
help reduce the chances of the cancer recurring. This treatment
is called intravesical therapy.
Following your TURBT you may receive an instillation of
medication into the bladder called Mitomycin C. This is a purple
coloured chemotherapy agent that affects the lining of your
bladder to kill any remaining microscopic cancer cells and reduce
the likelihood of the cancer returning. It is put directly into the
bladder through your catheter. It does not have the usual side
effects with chemotherapy such as hair loss and sickness as the
treatment is directly to the bladder.
For some patients, this is all the treatment needed at this stage.
Other patients require further treatment. Your doctor will inform
you if you need any more treatment at this point in order to help
prevent the return of the cancer.
You can use this book for recording any further treatments you
are having.
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For patients with non muscle invasive disease treatments include:
Further Mitomycin C treatment given on a weekly basis for 6
weeks. This procedure involves having a catheter inserted and
the medication inserted through the catheter into the bladder
where it is held for 1 to 2 hours before you pass urine into
the toilet.
BCG (which is primarily used for the vaccine of Tuberculosis).
This medication has been found to help the bladder’s immune
system to fight the disease and kill the cancer cells left in the
bladder. The BCG is put into the bladder in the same way as
the Mitomycin C and held in for 1 to 2 hours before you pass
urine into the toilet. The BCG is usually given weekly over a
six week period initially. Some patients require further BCG
given at three monthly intervals.
In some cases, you may also be given a combination of BCG
and Mitomycin C where the medications may be alternated at
different appointments.
Follow up & Surveillance
It is important to have regular check ups in order for your doctor
to observe inside your bladder for the effects of these treatments
and to look for any possible signs of cancer recurrence. This
is done using a procedure called a flexible cystoscopy. The
frequency of the cystoscopy will be determined by your doctors
based on your type of cancer. It is important for you to know
when your next check cystoscopy is due. This booklet will help
you keep track of your medical appointments and treatments.
You must contact the hospital if you need to reorganise any
of your appointments or have not received notification of
your next check up. This booklet contains a section for you to
record contact numbers for your treating hospital.
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Recording of appointments and treatments
This section is for you and those looking after you to record visits
to the hospital for appointments, check ups and treatments.
It helps keep you on track and you are encouraged to keep the
book safe and bring it with you whenever you attend.
Date
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Event
(e.g. cystoscopy)
Results
(histology)
Treatment
resulting
Next
follow up
Date
Event
(e.g. cystoscopy)
Results
(histology)
Treatment
resulting
Next
follow up
9
Date
10
Event
(e.g. cystoscopy)
Results
(histology)
Treatment
resulting
Next
follow up
Date
Event
(e.g. cystoscopy)
Results
(histology)
Treatment
resulting
Next
follow up
11
Date
12
Event
(e.g. cystoscopy)
Results
(histology)
Treatment
resulting
Next
follow up
Side effects and problems
Use this section to record any side effects or problems you are
having with your bladder cancer treatments.
Date
Problem
Detail of any
current treatment
(e.g. BCG)
What is the
outcome
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Glossary
Adenocarcinoma: A type of
malignant cancer cell.
and can be performed in the
Cystocopy suite.
BCG (Bacillus CalmetteGuerin): An intravesical
treatment shown to be useful in
the management of non muscle
invasive bladder cancer. The
BCG stimulates the body’s
immune systems to destroy the
cancer cells.
Grade: Refers to the
aggressiveness of the cancer.
Benign: A non-cancerous
growth/lump of normal tissue.
Catheter: A flexible tube
inserted into your bladder via
your urethra to instill fluid as
well as drain urine.
CIS (Carcinoma In Situ):
A flat looking early stage of
cancer affecting the lining of
the bladder.
Cystoscopy: A telescope
that is inserted through the
urethra in order to view the
inside of the bladder. A Rigid
Cystoscopy requires the
use of a General Anaesthetic
and is performed in the
Operating Theatre, whereas
the Flexible Cystoscopy
requires a Local Anaesthetic
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Histology: The microscopic
study of the special staining of
tissue specimens to determine
the nature of the cells.
Intravesical: Medication
inserted into the bladder
through the urethra.
Invasive cancer/disease: A
cancer that has spread beyond
the layer of cells where it first
developed into adjacent tissues.
Malignant: A tumour which
shows uncontrolled growth and
may invade and spread to other
parts of the body destroying
normal cells.
Mitomycin C: A type of
intravesical chemotherapy
shown to be useful in the
management of non muscle
invasive bladder cancer.
Non muscle invasive cancer/
disease: A cancer that does
not extend to the muscle layer
of the urinary bladder.
Pathologist: A doctor who
specialises in the diagnosis
and classification of diseases
using laboratory tests.
Tuberculosis: Respiratory
disease of the lungs.
Squamous cell Carcinoma: A
type of malignant cancer cell.
Tumour: A group of abnormal
cells (benign or malignant) that
may be found in lumps within
the body.
Transitional cells: The type
of cells that make up the
bladder lining.
Urethra: The tube leading from
the bladder where urine passes
to the outside of the body.
T Stage: T refers to the size
of tumour. It is used to define
how far a tumour has spread in
the bladder.
Urologist: Specialist doctor
that manages patients with
urological symptoms, problems
and diseases.
References and information source:
Figure 1
The Cancer Council New South Wales, (2007). Understanding
Bladder Cancer: A guide for people with cancer, their families and
friends. Woolloomooloo, NSW: The Cancer Council.
Available online from The Cancer Council website: http://www.
cancercouncil.com.au
Figure 2
CancerHelp UK., (2009). Diagram showing the T stages of
bladder cancer. Available from: http://www.cancerhelp.org.uk/
type/bladder-cancer/treatment/bladder-cancer-stage-and-grade
Accessed: 19/1/2011
A printed version of the Understanding Bladder Cancer booklet is
available from The Cancer Council within Australia. Ph: 13 11 20
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Useful Contacts and Websites:
WA Cancer and Palliative Care Network
If you would like to talk to the Urology Cancer Nurse Coordinator.
Monday to Friday 8:30 am - 4:30 pm
Phone: (08) 9222 0202
http://www.healthnetworks.health.wa.gov.au/cancer/home/
healthdirect Australia
24 hour health advice line
Phone: 1800 022 222
Cancer Council WA
24 hour helpline
Phone: 13 11 20
http://www.cancerwa.asn.au/
This care diary has been developed for use by patients with
non-muscle invasive bladder cancer by the WA Cancer and
Palliative Care Network and in consultation with the Australia
and New Zealand Urological Nurses Society Incorporated Uro
Oncology group. Whilst all efforts will be made to ensure that
this record is a true reflection of the current health care plan, it is
the responsibility of the patients’ health care providers to ensure
treatment plans have considered all appropriate factors within the
patients’ history. No guarantee can be given that this document is
free from error or omission.
Produced January 2011
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Notes
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© Department of Health 2011
HP11926A JAN’11
This document can be made available in alternative
formats on request for a person with a disability.