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

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

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