Welcome to the Patient-centred Follow-up Pathway (Breast Care unit)

Welcome to self-managed follow-up (Breast Care unit)

INTRODUCTION

On completion of your treatment for breast cancer you will be part of open access follow-up. This is called the Patient-Centred Follow-up Pathway (PCFU). The open access
pathway means that you will be self-managing with the support of the Breast PCFU
Team.
Evidence has shown that there are few advantages to having a traditional style annual
follow-up appointment for those that are feeling perfectly well. Patients often find that
hospital appointments are an additional source of anxiety which can in turn lead them
to not reporting worrying signs and symptoms immediately if an appointment is already
due. This type of follow-up has been designed to give you more control allowing quicker
access to the Breast Team when you need it.

This booklet will provide you with all the information you should need to contact the
Breast Team and arrange any appointments if you require them. The booklet also
contains other information that we think you may find useful as you recover from
treatment.

You will have an End of Treatment appointment over the telephone with a member of
the nursing team at around 12 months following treatment. Prior to your appointment
you will be sent in the post a Moving Forward book and Holistic Needs Assessment form
for you to complete (HNA) and discuss in your telephone appointment. Once your
telephone appointment is complete the team will arrange for you to have a copy of the
Treatment Summary to show the individual details of your cancer treatment that you
have received. A copy of this summary will also be sent to your GP for their records and
a copy will be filed in your hospital notes.

If you have any concerns or queries or feel that an appointment is required, the number
you need to contact is 01905 760113. There is an answer machine facility on this
number so please leave your full name, date of birth or hospital or NHS number as well
as a brief message as to why you are calling and a telephone number then we will call
you back as soon as we are able.

WHEN SHOULD I BE SEEN BY THE PCFU TEAM?

You should contact the Breast PCFU team if you develop any new symptoms that you
are concerned about or any other concerns such as:
 A lump or swelling in the breast, in the skin after a mastectomy, above the collar
bone, in the neck or armpit;
 Any skin changes, red areas or raised spots on the breast or mastectomy scar;
 Nipple discharge;
 Swelling to the arm / hand on the side of your surgery;
 Any new persistent, worsening bone pain that wakes you up at night that does
not improve with painkillers;
 A constant feeling of nausea, unexplained weight loss and loss of appetite;
 Discomfort or swelling under the ribs or across the upper abdomen;
 A dry cough or feeling breathlessness;
 Severe headaches – usually worse in the morning;
 Any abnormal neurology e.g. pins and needles and/or numbness or weakness
in the arms or legs or loss of coordination. A loss of bladder or bowel function
may suggest underlying spinal cord compression, please contact your GP,
Breast Care Support Worker Helpline or the Out of Hours Services as this may
require urgent assessment.

YOUR FUTURE MAMMOGRAMS

People who have had breast cancer have a slightly increased risk of developing a further
cancer (recurrence), or a new cancer, in either breast. Mammograms (breast X-rays)
can often detect breast cancer before it can be felt. For the majority of people
mammograms are the recommended way of checking for breast cancer. Some patients’
cancer was not visible on mammography when they first presented with the disease,
however, surveillance mammography is still the best investigation for following up this
group of patients, as any recurrence or new cancer is most likely to show up on future
mammograms. Ultrasound or MRI scans are not recommended for routine surveillance.
If you have had a mastectomy either with or without breast reconstruction, the other
breast will be checked with a mammogram. Our current recommendation is that you
should have annual mammograms for five years following your surgery date. You should
receive a mammogram appointment letter approximately one month before it is due. If
you have not received this, please contact the Breast Imaging Department on 01905 760146

Your mammograms will be carried out at either the Alexandra Hospital in Redditch, the Imaging Centre at Kidderminster or the Breast Unit in Worcester.

If you were diagnosed under the age of 45 you will have yearly mammograms until age
50 (a minimum of five annual mammograms). After this, you will then come under the
National Breast Screening programme. The breast team are responsible for requesting
annual mammograms and this will be done after you have been given your operation
results.

MAMMOGRAM RESULTS

You will receive a letter with the results approximately 2 to 3 weeks following the
mammogram. Your GP will also receive a copy of your results once they are available.
If there is any concern following your mammogram, we will recall you so we can carry
out further assessment or investigations.

NHS BREAST SCREENING PROGRAMME

A screening invitation is sent out every three years to all women between the ages of
50 and 70. If you have recently undergone treatment for breast cancer and receive an
invitation to attend for a screening mammogram during your five-year follow up period,
please cancel the appointment with the NHS screening unit (number will be on the
appointment letter), informing them that you are receiving regular mammograms at the
hospital after treatment for breast cancer.

RECOVERY AFTER SURGERY

Is it normal to still get aches and pains in my breast/chest several months after
surgery?
Many people continue to get discomfort in their breast, underarm or around the
mastectomy scar for many months, even years, after their surgery. This can be a normal
consequence of surgery and/or radiotherapy. Some patients describe this as an
intermittent ‘stabbing pain’. However, if you develop a new pain that gets worse over
two to three weeks and does not ease with rest and pain relief, please contact us to
arrange a review.

Why do I have a strange sensation on the inside of my upper arm?
This is usually as a result of surgery affecting the nerves under the arm, resulting in
changed sensation (often numbness). This can be temporary or permanent.

My scar feels hard and lumpy. Is this normal?
After your operation, it is normal for your breast/scar to feel different. There may be fluid
in the wound cavity (seroma), or bruising that can remain for some time, and also scar
tissue formation. Gently massaging the area with a moisturiser of your choice can help
to soften it over time. If you notice any new lumps, please contact us so we can arrange
a review by one of the breast surgeons.

What is this tight ‘pulling’ sensation down my arm?
This is known as cording and thought to be related to hardening and tightening of the
lymph vessels following axillary surgery. This often feels like an elastic band being
pulled. If you experience this, and it does not settle with the shoulder-stretching
exercises or firm massage to the corded area, contact your Breast Care Nurses for
further advice. Please refer to the Breast Cancer Now exercise leaflet in the pack that
you will have been given by one of the Nurse Specialists in clinic. Alternatively, you can
access the same exercise leaflet via the Breast Cancer Now website or on the Cancer
App.

Swelling of the arm pit and/or breast or chest wall
Surgery to the axilla can increase the risk of swelling in the armpit or hand
(Lymphoedema). If you develop symptoms like this, please contact the Breast Team in
the first instance. You may require an assessment for arm hosiery or a referral to the
Lymphoedema Nurses.

BREAST RECONSTRUCTION

If you have had a breast reconstruction and notice any problems such as pain, skin
changes or change in shape, please contact the Breast PCFU Team for advice. Please
contact the Breast Nurse Specialists if you would like information about a delayed breast
reconstruction.

RECOVERING FROM CHEMOTHERAPY

For how long will I feel tired?

Tiredness or fatigue is the most common side effect reported by patients after having
breast cancer treatment. It can be particularly severe after chemotherapy. It may go on
for several months after completing treatment and can be slow to improve. Some
patients feel that it takes at least a year for energy levels to return to normal. If you are
struggling to cope with fatigue, please contact the Breast PCFU Team for management
advice.

When will my hair grow back and when can I dye it?
Your hair should start growing back three to four weeks after chemotherapy finishes.
The hair grows slowly to begin with and can be quite fluffy and thin, but over time the
hair thickens, and by six months, most people find that their hair should be growing well.
As your new hair will be delicate, it is recommended that you wait around six months, or
an inch in growth, before having chemical, permanent or semi-permanent dyes on your
hair.

Why have I put on weight?
Weight gain is commonly reported during and after breast cancer treatment and is
thought to be due to a number of reasons. These include steroids used during
chemotherapy to help prevent nausea, change of eating habit/appetite, reduction of
physical activity levels and hormonal changes. If you would like support or advice to help
increase your activity or make healthy changes to your diet, please contact the Breast
PCFU Team.

I have numbness in my fingers and toes. How long will this last?

This is called peripheral neuropathy and can be a side effect of chemotherapy where
damage to the nerves occurs. It can take up to six months to improve, and very
occasionally, it can be permanent.

Treatment and Fertility including tamoxifen

Chemotherapy can bring on the menopause earlier than it would have naturally
occurred. This is more common if you are close to the menopause age when you start
treatment. Some women find that their periods stop whilst they are having chemotherapy
and do not come back. Patients taking tamoxifen can continue to have periods or they
become different to your usual pattern. You are advised to use hormone free
contraception whilst taking tamoxifen even if periods have stopped as conception can
still occur. Tamoxifen can cause abnormalities with the baby if taken when pregnant.

RECOVERING FROM RADIOTHERAPY

Radiotherapy can cause soreness of the skin that has been treated, which includes the
breast, chest wall, axilla and/or above the collarbone. This often peaks towards the end
of treatment and in the two weeks following completion. Most skin reactions resolve and
completely heal by four to six weeks after completing radiotherapy. Fatigue can also be
a side effect of radiotherapy and it can sometimes take several months to notice an
improvement and have lasting effects for years. Pain in the treated area can also take
months to settle.

HORMONE THERAPY

Patients with hormone-sensitive breast cancers are prescribed anti-hormonal
treatments in the form of tablets. This is also known as endocrine treatment, and
includes the medicines tamoxifen, anastrozole, letrozole and exemestane. You will have
been advised to take these tablets for a minimum of five years, and a small group of
patients may benefit for up to 10 years. At five years, we will write to you and your GP
to advise if this treatment is to continue or stop. Your Treatment Summary should also
confirm the start date and planned duration of this treatment.
Some patients struggle with side effects of hormone therapy and may need to switch to
an alternative type/brand of tablet. Often the symptoms are worse for the first three
months before settling down. Please contact the Breast PCFU Team if you have any
concerns relating to endocrine treatment.
Some patients will be recommended a change in tablets if they become menopausal
during the five-year follow-up. If you have not had a period for at least twelve months,
and think this may be the case, please contact us for advice.
You are entitled to free prescriptions after a cancer diagnosis, so if you have not already
organised this, contact your GP practice for an exemption certificate.

DEXA SCANS

When you are taking an aromatase inhibitor such as letrozole, anastrozole or
exemestane you may need one or more bone density scans (DEXA scans). These
scans can tell us if you are developing bone thinning which could lead to a condition
called osteoporosis. These scans need to be arranged through your GP. Your Treatment
Summary should tell you if these are required. If your periods have stopped early
because of your treatment, you may also need bone density scans. This can also be
arranged by your GP. Regular exercise such as walking as well as a diet high in calcium
will help to maintain bone health.

MANAGING MENOPAUSAL SYMPTOMS

Many women who receive treatment for breast cancer develop menopausal symptoms.
This can be due to the effects of chemotherapy, taking endocrine treatment or stopping
HRT (Hormone Replacement Therapy). Hot flushes and night sweats are the most
common symptoms, but many women also notice vaginal dryness, weight changes,
mood swings and changes in libido. Please contact the Breast PCFU team or your GP

for advice on managing any of these symptoms. It is not recommended to take HRT
when you have had a breast cancer diagnosis, as it may increase your risk of
recurrence. If you are suffering with vaginal dryness, it is advised to avoid topical
oestrogens where possible and try non-hormonal vaginal moisturisers

FEELING UNABLE TO COPE

While it is normal to feel low from time to time, sometimes you may find the way you are
feeling is interfering with your enjoyment of life. If you are finding it difficult to cope, your
Breast Clinical Nurse Specialist may be able to arrange an appointment for one to one
support or counselling for yourself or your relatives.
We can also refer you to the Worcestershire Breast Unit Haven who are a charity based
within the Worcestershire Breast Unit itself. The charity provides and offer support to
patients whether newly diagnosed, undergoing treatment or having finished treatment.
They provide practical and physical activities to assist in the recovery of treatment from
breast cancer.
We also have some great local support groups in the Worcestershire area which are all
listed at the end of this booklet. Please contact the Breast Cancer Support Worker or
your Breast Clinical Nurse Specialist to be referred to the charity or support groups or
purely for a chat to find out more information.

AND FINALLY…

If you are worried about something to do with your breast cancer, or the treatment that
you have had for it, please contact the Breast Cancer Support Worker or your Breast
Clinical Nurse Specialist. They would rather see you with something that turns out to be
nothing, than for you to be at home worrying. There is some evidence that suggests
cancer patients can feel very vulnerable when the active treatment stops, suddenly all
the professionals around you disappear leaving you alone. It is important to build up a
network of support around you; this can be achieved through support groups and
exercise classes. At the end of this leaflet is a list of contacts and information where you
can find other support.
Once you have been on Patient Initiated Follow-up for 5 years, the Multi-disciplinary
team will review your records, if you have remained well and not required further
interventions over that time they will discharge you from the hospital and Patient Initiated
Follow-up to the care of your GP and practice team.

CLINICAL NURSE SPECIALISTS
01905 760261
This telephone does have voicemail facility. Please leave a short message including your name, number
and date of birth and we will call you back.
Or, we can be emailed as follows:
[email protected]

STAFF NURSE IN BREAST SERVICES
01905 760261
This telephone does have voicemail facility. Please
leave a short message including your name, number
and date of birth and we will call you back.

BREAST CANCER SUPPORT WORKERS
01905 760113
This telephone does have voicemail facility. Please
leave a short message including your name, number
and date of birth and we will call you back.

MAMMOGRAM APPOINTMENTS
Follow-up / Surveillance Mammograms /
Breast Screening Mammograms
01905 760145

SUPPORT GROUPS
Worcestershire Breast Unit Haven “Last
Friday Breast Cancer Support Group”
WBUH (worcsbreastunithaven.com)
01905 733786
The Worcestershire Breast Unit Haven charity
support group (The Last Friday Group) is a friendly
& supportive group that meets within
Worcestershire on the last Friday of the month.
There is also an active Facebook and Instagram
page you can follow.

Malvern Breast Cancer Support Group Malvern Breast Cancer Support Group | Facebook
Contact [email protected] to arrange a
telephone call to find out more or the Facebook
group linked above.
The Malvern group provide advice and support for
ladies affected by breast cancer. They go on regular
walks and have social get-togethers with some
occasional guest speakers.

Bosom Buddies Breast Cancer Support Bosom Buddies Breast Cancer Support | Facebook
Bosom Buddies meet for coffee each Monday near
Kidderminster and one Monday evening every
month. For further details, call Jo on 07402 869210
or visit the Facebook group linked above.

The Boobage Support Group, Evesham We are a friendly new support group, meeting for a
relaxed coffee and chat on the first Friday of every
month.
Contact Vicky or Penny on either
[email protected] or
[email protected] to find out more

You can find out more information by downloading the official Worcestershire Acute NHS Trust
HealthZone UK application. Please scan the QR code below to download it or search for
“HealthZone UK” on your phones App store.

Alternatively, you may wish to visit the Worcestershire Acute Trust website linked below where you will
also see the details relating to all our support groups and other useful links for resources that might be
helpful.

Breast Support Groups: Breast care support groups – Worcestershire Acute Hospitals NHS Trust
(worcsacute.nhs.uk)

Radiotherapy to breast and chest wall: https://staging.worcsacute.mixd.co.uk/documents/documents/patientinformation-leaflets-a-z/radiotherapy-to-the-breast-chest-wall-and-lymph-nodes/

Simple Lymphatic Drainage: https://staging.worcsacute.mixd.co.uk/documents/documents/patient-informationleaflets-a-z/simple-lymphatic-drainage-sld/

If you do not have access to a computer but are still interested in joining these groups or require paper
copies of the letters mentioned, please do not worry! Speak to your Clinical Nurse Specialist or Breast
Cancer Support Workers who will be able to help.

If your symptoms or condition worsens, or if you are concerned about anything,
please call your GP, 111, or 999.

Patient Experience

We know that being admitted to hospital can be a difficult and unsettling time for you
and your loved ones. If you have any questions or concerns, please do speak with a
member of staff on the ward or in the relevant department who will do their best to
answer your questions and reassure you.

Feedback

Feedback is really important and useful to us – it can tell us where we are working well
and where improvements can be made. There are lots of ways you can share your
experience with us including completing our Friends and Family Test – cards are
available and can be posted on all wards, departments and clinics at our hospitals. We
value your comments and feedback and thank you for taking the time to share this with
us.

Patient Advice and Liaison Service (PALS)
If you have any concerns or questions about your care, we advise you to talk with the
nurse in charge or the department manager in the first instance as they are best placed
to answer any questions or resolve concerns quickly. If the relevant member of staff is
unable to help resolve your concern, you can contact the PALS Team. We offer informal
help, advice or support about any aspect of hospital services & experiences.
Our PALS team will liaise with the various departments in our hospitals on your behalf,
if you feel unable to do so, to resolve your problems and where appropriate refer to
outside help.
If you are still unhappy you can contact the Complaints Department, who can investigate
your concerns. You can make a complaint orally, electronically or in writing and we can
advise and guide you through the complaints procedure.

How to contact PALS:

Telephone Patient Services: 0300 123 1732 or via email at: [email protected]

Opening times:
The PALS telephone lines are open Monday to Friday from 8.30am to 4.00pm. Please
be aware that you may need to leave a voicemail message, but we aim to return your
call within one working day.
If you are unable to understand this leaflet, please communicate with a member of staff.

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