Lung follow-up A patient information leaflet that may answer
your questions about your follow-up care
Trachea (windpipe) Lining (pleura)
Bronchus
Lymph nodes
Bronchus
left lungRight lung
Diaphragm
Heart
2
shore, though you may have to go through
even rougher waters to get there.
Unfortunately when you get to safety,
you may find yourself experiencing more
distress. You now have time to think, to
realise how badly your boat has been
damaged and how much equipment you
have lost.
You may feel stranded, facing a series of
daunting tasks. You need to decide where
you are going. You have to rebuild your
boat and develop the strength to sail it
again despite lost or broken kit and despite
fearing another storm.
But off you go...!!
And this booklet is part of your new
equipment.
ForewordThis booklet is for you because you have
been caught up in the storm that is cancer.
You were sailing along satisfactorily in your
boat with everything you needed on board.
Sometimes the seas were calm, sometimes
the water was quite choppy but you
weathered the problems, studied the
map and kept going…
Then suddenly the storm of cancer
enveloped you. Your boat was blown all
over the place, lashed by wind and rain
so that you couldn’t even see where you
were going.
Your equipment was washed overboard
while you clung to whatever you could to
save yourself from going over the side too.
The medical team is your lifeboat. They have
come out to you and are towing you to the
Foreword 2
Introduction 4
Your questions answered 5
My Personal Treatment Record Summary 9
Management and Support Plan 0
Your concerns and who to talk to -
Helpful contacts – local w
– general e
My notes r
How to find us y
3
Contents
This booklet was written by the
Hillingdon Hospital lung cancer team
Front cover image: © The Roy Castle Lung
Cancer Foundation
4
After treatment – follow-up
After your treatment has finished, your
condition will continue to be monitored either
at the hospital or in the community. This is a
good time to discuss with your doctor and
nurse any problems you may have.
Regular check-ups at the hospital will be
offered, but if you prefer we can arrange for
your follow-up to be with your local General
Practitioner (GP), community nurses or our
community clinic in Hayes.
This leaflet tells you about how follow-up is
arranged at the hospital.
IntroductionThis booklet gives information about
your follow-up care for your Lung
Cancer or Mesothelioma.
It aims to answer some of the questions
you may have about how you will be
followed up at the hospital, who will
see you and who to contact about your
condition if you have any concerns
between hospital appointments.
Who will see me at the check-up
appointments?
At the hospital check-ups you will be seen
by a specialist doctor, who is a member of
the Lung Cancer Team, and the Lung Cancer
Nurse. This doctor is called a Palliative
Medical Consultant and their specialty
is Palliative Care. This means helping to
alleviate symptoms and concentrating on
quality of life, by ensuring that you can live
as comfortably and fully as possible. This is
done by focusing on controlling pain and
any other symptoms associated with cancer,
as well as helping you with social, spiritual
and emotional needs.
What happens at your appointment?
Your doctor and nurse will talk with you
about how you are getting on. This is
a good time to discuss any problems or
new symptoms you may have. We know
that having Lung Cancer or Mesothelioma
can impact on many aspects of a person’s
life, causing physical symptoms such as
breathlessness, cough or pain. It can result
in practical problems to do with financial
issues, transportation or concerns within
the family. It can bring with it changes in
your emotions as you learn to live with
your condition.
Can I bring my family or carer to my
appointments?
We encourage active involvement of family
and carers and welcome their attendance
at the clinic. Addressing their concerns
and need for support or information is
important.
5
Your questions answered
“Every question I asked, they answered
truthfully, in plain language that
a lay man would understand.”
6
What help can we offer?
Your doctor and nurse are interested in all of
your concerns and wish to help you to cope.
They may:
• Offer specific advice about disturbing
symptoms if they occur, such as pain,
nausea and shortness of breath.
• Provide information about your
condition and treatments such as
chemotherapy and radiotherapy.
• Assist with family worries including
advice on practical help in the home and
advice on transportation and financial
matters.
• Offer emotional and psychological
support in helping you and your family
adjust to the changes in lifestyle your
illness may cause.
• Refer you to support services such as
community nurses who visit you at home
or a social worker or a counsellor.
Your check-ups may involve tests from time
to time, if indicated, but routine scans are
not generally used to monitor Lung cancer
or Mesothelioma.
Will I be prescribed any medicines like
oxygen or inhalers?
Your doctor and nurse will assess the
medications you need to manage the
symptoms related to your Lung Cancer
or Mesothelioma. Oxygen is used to treat
low levels of oxygen circulating in your
blood. It is a drug and should only be
used after an assessment by your doctor.
It can be dangerous for certain groups of
patients with lung disease who are ‘oxygen
sensitive’.
Inhalers are devices that are designed to
deliver medication directly to the lungs to
relieve symptoms. They are more often
used in conditions such as asthma and
may not be as helpful in Lung Cancer or
Mesothelioma. Your doctor will know if
these medications would be helpful to you.
7
Other medications that may be used
include: painkillers, cough medicines,
steroids etc. In order to ensure these drugs
don’t interfere with your usual medicines,
it is important that you bring all your usual
medicines with you to the clinic so that we
are aware of all the drugs you are taking.
How often will I have check-ups?
How often you have appointments depends
upon your needs. If you have troublesome
symptoms you may need to be assessed
every month. However, if all is going well
for you, appointments may be less frequent,
every 3-6 months.
We have a flexible approach and aim to
offer tailor-made follow-up support which
meets your individual needs. You will be
offered regular appointments; however,
on occasions should you feel you need a
more urgent appointment, we would be
happy to bring your appointment forward.
This means you can telephone and make
an appointment at short notice (usually
within a week or two). You can also have
telephone advice and support in-between
your appointments by telephoning your
Lung Cancer Nurse.
Will I have any more treatments for
my cancer?
On occasion, it may be that further
treatment from the oncologist or surgeon
may be suggested for a particular symptom.
We work closely together with these
doctors and timely referral back for specialist
opinions or treatment can be organised
from this clinic.
“It’s knowing who to call if I am worried
about anything.”
88
Will my GP and Community Nurse know
about the appointments?
After you attend, your GP and your
community nurse, if you have one, will be
kept up to date on how your hospital follow-
up is going. They will usually be sent a letter
within a week of your attendance at the
clinic. We work closely with the Community
Palliative Care Team and District Nurses.
Are you worried about
your appointments?
Many people find their check-ups quite
worrying. If you feel you are getting on with
life, a doctor’s appointment can bring all the
thoughts about your cancer back to you.
You may find it helpful to tell someone close
to you how you are feeling. If you are able
to share your worries they may not seem
so bad.
It is quite common nowadays for people to
have counselling after cancer treatment. If you
would like to talk to someone outside family
and friends, let your doctor or nurse know
and they can arrange for you to see someone.
What if I am too ill to come to
the appointment?
For some people there comes a time when
struggling to keep clinic appointments
becomes too much for them. Under these
circumstances, it is possible to refer your
ongoing care to the community teams. If
clinic attendance is a struggle, please talk
to us.
Who do I call if I have problems in
between appointments?
Learning to live with Lung cancer or
Mesothelioma can be difficult and patients
tell us they often worry about symptoms.
Knowing who to call, and when, can be
confusing especially as various health care
professionals will give you their telephone
numbers.
On pages 12 and 13 of this booklet is a list
of problems patients with Lung Cancer or
Mesothelioma can develop and who to call.
Whilst this is a guide it is not absolute and if
you are concerned or confused about who
to call, please talk to us.
9
My personal treatment
record summary
9
10
Your diagnosis is:
The treatment you have had: Aim of the treatment:
Ongoing services or treatment you will be receiving:
1
2
3
4
As an outcome of the discussion it was agreed:
1
2
3
4
Management and Support Plan
Following your first assessment, you have identified the following key concerns, care needs or
goals that you would like to see addressed, improved or achieved:
10
My personal treatment record summary
11
Assessment completed by:
Name
Title
Signature of professional
Contact details
Suggestions on services available for you and healthy lifestyle advice
11
Follow-up arrangement / Monitoring / Date of next review
12
Common medical problems
Normal cold or flu-like illness
Contact your GPA cough with green or brown phlegm
which might be a chest infection
A problem to do with another existing
medical condition (not your lung cancer)
like high blood pressure or diabetes
Gradually worsening symptoms
These are common problems related to Lung Cancer and Mesothelioma
and may change over days to weeks.
An existing dry cough that is getting worse
Contact your Lung Cancer Nurse
Monday – Friday
9am-4pm
Increasing breathlessness that is not related
to a recent cold or flu
Streaks of blood in the sputum
Feeling more tired than usual
Weight loss, loss of appetite
Side effects from treatment or medicines
you are taking
Pain in the back or chest area, or any pain
that persists
Your concerns and who to talk to
13
Rare symptoms that need assessment within 24-48 hours
Coughing up lots of blood
If these occur during office hours contact
your Lung Cancer Nurse
Monday-Friday, 9am - 4pm
Out of these hours please contact out
of hours services via your GP or visit the
Accident & Emergency Department at
Hillingdon Hospital
Troublesome swallowing, especially liquids
Tingling/numbness in fingers or toes
Weakness in your legs or arms
A sudden swelling of an arm or a leg
Drowsiness or more sleepy than usual
Bad headaches that don’t improve in a
day or two
Vomiting not related to a recent stomach
bug
Practical worries or concerns
Problems getting to the hospital for
appointments
A number of people can help you with
these concerns such as your:
• Lung Cancer Nurse
• Community Nurse
• Social Worker
• Physiotherapist
• Dietician
• Local Counsellor/Psychologist
Financial and family concerns
Worries about managing at home
Emotional concerns
Concerns about taking your medicines
Advice about diet and exercise
14
Helpful local contacts when dealing with Lung Cancer or Mesothelioma
Contact What they provide Contact
General
Practitioner (GP)
This is your family doctor Name………………...............….
Tel ……………...............……….
Palliative Medical
Consultant
This is the doctor who sees
you in the Follow-up Clinic and
monitors your Lung Cancer or
Mesothelioma
Name………………….
Secretary telephone number:
01895 279412
Lung Cancer
Nurse
Specialises in cancer care and
gives patients information and
support
Name………………...............….
Tel: 01895 279584
Monday-Friday 9-4pm
(answerphone)
District Nurse Provides nursing care and
practical advice while visiting
you at home
Name………………...............….
Tel: 01895 234001
Macmillan Nurse Provides advice on managing
symptoms and coping with
cancer, usually visiting you at
home
Name………………...............….
Tel ……………...............……….
Michael Sobell
House 24 hour
advice line
Provides advice on complex
symptoms
Tel: 01923 844281
15
Helpful general contacts when dealing with Lung Cancer or Mesothelioma
Contact What they provide Contact
British Lung
Foundation
Provides information, newsletters
and Support Groups
08458 50 50 20
Mesothelioma UK Provides information to patients
diagnosed with Mesothelioma
via a helpline. Gives information
on treatment and financial help
0800 169 2409
Macmillan
Cancer Support /
Cancerbackup
Provides information and advice
about many aspects of cancer
including treatment, emotional
effects and financial concerns
0808 808 00 00
The Roy Castle
Lung Cancer
Foundation
Provides a range of free lung
cancer booklets, factsheets and
DVDs, helpline, support groups
and on-line discussion forums
0800 358 7200
There are many other
sources of support and
help available. Please
talk to your Lung Cancer
Nurse if you need further
information about any
aspect of living with
your condition.
Your notes:
16
17
18
D
A
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VehicularEntrance D
VehicularEntrance B
OutpatientsEntrance
A&E EntranceMaternity Entrance
VehicularEntrance A
Main Entrance
VehicularEntrance C
PIELD HEATH ROAD
ROYA
L LAN
E
COLHAM GREEN ROAD
CNWLWoodlands
Peter Pan & Wendy WardPaediatric Outpatients
Pinewood WardQuebec Suite
Blood Tests
Churchill W
ard
Middlesex Ward
Lister W
ard
Pagett Ward
Diabeticare
Occupational
Therapy
Beaconsfield East & The Stroke Unit
Hearing Aid &
TherapyCentre
VoluntaryServices
Elderly DayHospital
Alderbourne Rehabilitation
Unit
TheGreenacres
Centre
EducationCentre
HillingdonConsulting
Rooms
Ramp
Ramp
Visitors
CNWL Riverside
Centre
The Furze
AnteNatal
Outpatients Pharmacy(LG)
Chaplaincy(LG)
Shops
Link (LG)
ChoicesRestaurant
(LG)
PilotWard
MaternityBuilding
A&E
Visitors
Visitors
Visitors
Tower Block Lower Ground Floor
Tudor Centre(G.U.M. Clinic)
OutpatientsEntrance
A&EEntrance
MainEntrance
A&E
Hillingdon Consulting Rooms
HarmoniClinic
League of Friends Café
SocialServices
Cashier
Patient Affairs/Bereavement Office
Trust Management Intensive TreatmentUnit (ITU)
Cardiology(ECG)
Tower Block First FloorTower Block Ground Floor
Outpatients 5-8ENT
Outpatients
Oral SurgeryDental
Outpatients
Day Care UnitPathology
Shops
X-Ray
Children’sA&E
Observation &Assessment Ward
EndoscopyOrthopaedics
OutpatientBooking Centre
Transport Office
FractureClinic
PhysiotherapyOccupational
Health
SurgicalAppliances/Orthotics
Back PainClinic PALS
MRI/CTUltrasound
Car ParkOffice
PUBLICTELEPHONE
PHARMACY
CAR PARKING FORPATIENTS & VISITORS
DISABLED CAR PARKING
STAFF CAR PARKING
CAR PARKPAY MACHINE
RESTAURANT
WC MALE & FEMALE
DISABLED WC
BABY CHANGING
CAFÉ
STAIRS
INFORMATION
LINK CORRIDORS
ENTRANCES
CASHPOINT
SECURITY
LIFTS
DROP-OFFPOINT
Departmentnt Area FloorA&E Tower Block GAdmissions Green Zone 1Alderbourne Rehabilitation Unit Green Zone G
Alexandra Ward Maternity 3Ante Natal Maternity G Back Pain Clinic Tower Block GBeaconsfield East & The Stroke Unit Green Zone G
Bereavement Office Tower Block GBlood Tests Green Zone GCafé - League of Friends Tower Block GCardiology (ECG) Tower Block 1 Chaplaincy Centre (multi faith) Tower Block LG
Child Development Centre The Furze GChurchill Ward Green Zone GCNWL Riverside Centre Riverside GCNWL Woodlands Woodlands GCoronary Care Unit (CCU) Tower Block 3Day Care Unit Tower Block 1Delivery Suite Maternity GDental Outpatients Tower Block 1Diabeticare Green Zone GDrayton Ward Tower Block 2Elderly Day Hospital Green Zone GElizabeth Outpatients Dept Tower Block 3Endoscopy Tower Block GENT Outpatients Tower Block 1Fleming Cumberlege Centre Tower Block 4Fracture Clinic Tower Block GGrange Ward Tower Block 5Harmoni Clinic Tower Block GHayes Ward Tower Block 6Hearing Aid & Therapy Centre Green Zone GHillingdon Consulting Rooms Tower Block GIntensive Treatment Unit (ITU) Tower Block 1
Departmentnt Area FloorJersey Ward Tower Block 7Kennedy Ward Tower Block 8Lister Ward Green Zone GMarina Ward Maternity 1Middlesex Ward Green Zone GMRI/CT/Ultrasound Tower Block GNeo Natal Unit Maternity 1Observation & Assessment Ward Tower Block GOccupational Health Tower Block GOccupational Therapy Green Zone GOral Surgery Outpatients Tower Block 1Orthopaedics Tower Block GOrthotics (Surgical Appliances) Tower Block GOutpatient Clinics 5 - 8 Tower Block 1Outpatients Reception & Booking Centre Tower Block G
Paediatric Outpatients GPagett Ward Green Zone GPathology Tower Block 1Patient Affairs Tower Block GPeter Pan & Wendy Ward GPharmacy Tower Block LGPhysiotherapy Tower Block GPilot Ward GPinewood Ward Green Zone GPre-Assessment Clinics Green Zone GQuebec Suite Green Zone GRestaurant (Choices) Tower Block LGShops Tower Block GSocial Services Tower Block GThe Greenacres Centre Green Zone GTransport Office Tower Block GTudor Centre (GUM Clinic) Green Zone GVoluntary Services Green Zone GX-Ray Tower Block G
The Lung Follow-up Clinic and how to find us
The clinic is normally held in a building
called the Elderly Day Hospital.
The easiest way to get to there is to use the
hospital entrance located on Royal Lane and
follow the signs.
Alternatively, if you require hospital
transport for the appointment, please
telephone the secretary or your Lung Cancer
Specialist Nurse.
“Thank you for all you have done. You have made mylife a lot easier
at a very difficult time.”
19
D
A
C
B
VehicularEntrance D
VehicularEntrance B
OutpatientsEntrance
A&E EntranceMaternity Entrance
VehicularEntrance A
Main Entrance
VehicularEntrance C
PIELD HEATH ROAD
ROYA
L LAN
E
COLHAM GREEN ROAD
CNWLWoodlands
Peter Pan & Wendy WardPaediatric Outpatients
Pinewood WardQuebec Suite
Blood Tests
Churchill W
ard
Middlesex Ward
Lister W
ard
Pagett Ward
Diabeticare
Occupational
Therapy
Beaconsfield East & The Stroke Unit
Hearing Aid &
TherapyCentre
VoluntaryServices
Elderly DayHospital
Alderbourne Rehabilitation
Unit
TheGreenacres
Centre
EducationCentre
HillingdonConsulting
Rooms
Ramp
Ramp
Visitors
CNWL Riverside
Centre
The Furze
AnteNatal
Outpatients Pharmacy(LG)
Chaplaincy(LG)
Shops
Link (LG)
ChoicesRestaurant
(LG)
PilotWard
MaternityBuilding
A&E
Visitors
Visitors
Visitors
Tower Block Lower Ground Floor
Tudor Centre(G.U.M. Clinic)
OutpatientsEntrance
A&EEntrance
MainEntrance
A&E
Hillingdon Consulting Rooms
HarmoniClinic
League of Friends Café
SocialServices
Cashier
Patient Affairs/Bereavement Office
Trust Management Intensive TreatmentUnit (ITU)
Cardiology(ECG)
Tower Block First FloorTower Block Ground Floor
Outpatients 5-8ENT
Outpatients
Oral SurgeryDental
Outpatients
Day Care UnitPathology
Shops
X-Ray
Children’sA&E
Observation &Assessment Ward
EndoscopyOrthopaedics
OutpatientBooking Centre
Transport Office
FractureClinic
PhysiotherapyOccupational
Health
SurgicalAppliances/Orthotics
Back PainClinic PALS
MRI/CTUltrasound
Car ParkOffice
PUBLICTELEPHONE
PHARMACY
CAR PARKING FORPATIENTS & VISITORS
DISABLED CAR PARKING
STAFF CAR PARKING
CAR PARKPAY MACHINE
RESTAURANT
WC MALE & FEMALE
DISABLED WC
BABY CHANGING
CAFÉ
STAIRS
INFORMATION
LINK CORRIDORS
ENTRANCES
CASHPOINT
SECURITY
LIFTS
DROP-OFFPOINT
Departmentnt Area FloorA&E Tower Block GAdmissions Green Zone 1Alderbourne Rehabilitation Unit Green Zone G
Alexandra Ward Maternity 3Ante Natal Maternity G Back Pain Clinic Tower Block GBeaconsfield East & The Stroke Unit Green Zone G
Bereavement Office Tower Block GBlood Tests Green Zone GCafé - League of Friends Tower Block GCardiology (ECG) Tower Block 1 Chaplaincy Centre (multi faith) Tower Block LG
Child Development Centre The Furze GChurchill Ward Green Zone GCNWL Riverside Centre Riverside GCNWL Woodlands Woodlands GCoronary Care Unit (CCU) Tower Block 3Day Care Unit Tower Block 1Delivery Suite Maternity GDental Outpatients Tower Block 1Diabeticare Green Zone GDrayton Ward Tower Block 2Elderly Day Hospital Green Zone GElizabeth Outpatients Dept Tower Block 3Endoscopy Tower Block GENT Outpatients Tower Block 1Fleming Cumberlege Centre Tower Block 4Fracture Clinic Tower Block GGrange Ward Tower Block 5Harmoni Clinic Tower Block GHayes Ward Tower Block 6Hearing Aid & Therapy Centre Green Zone GHillingdon Consulting Rooms Tower Block GIntensive Treatment Unit (ITU) Tower Block 1
Departmentnt Area FloorJersey Ward Tower Block 7Kennedy Ward Tower Block 8Lister Ward Green Zone GMarina Ward Maternity 1Middlesex Ward Green Zone GMRI/CT/Ultrasound Tower Block GNeo Natal Unit Maternity 1Observation & Assessment Ward Tower Block GOccupational Health Tower Block GOccupational Therapy Green Zone GOral Surgery Outpatients Tower Block 1Orthopaedics Tower Block GOrthotics (Surgical Appliances) Tower Block GOutpatient Clinics 5 - 8 Tower Block 1Outpatients Reception & Booking Centre Tower Block G
Paediatric Outpatients GPagett Ward Green Zone GPathology Tower Block 1Patient Affairs Tower Block GPeter Pan & Wendy Ward GPharmacy Tower Block LGPhysiotherapy Tower Block GPilot Ward GPinewood Ward Green Zone GPre-Assessment Clinics Green Zone GQuebec Suite Green Zone GRestaurant (Choices) Tower Block LGShops Tower Block GSocial Services Tower Block GThe Greenacres Centre Green Zone GTransport Office Tower Block GTudor Centre (GUM Clinic) Green Zone GVoluntary Services Green Zone GX-Ray Tower Block G
Elderly
Day
Hospital
Published: July 2010Review date: July 2012Code: PI 047
TheHillingdon Hospitals NHS Foundation TrustPield Heath Road Hillingdon UB8 3NN
Hospital switchboard: 01895 238282
Web: www.thh.nhs.uk
LANGUAGES / ALTERNATIVE FORMATS:Please ask if you require this information in other languages, large print or audio format.
Please contact: 01895 279757