Breast cancer your treatment and recovery in Leeds

You will be given additional information about the specific treatments you may need, such as chemotherapy, radiotherapy, endocrine therapy and there may be other therapies recommended based on your individual cancer:- these treatments can be given in any order, and this will be discuss with you on an individual basis by the specialist Breast Team.

This booklet can also be used to access support services during your treatment and beyond.

To enable you to keep a record of who will be looking after and caring for you at Leeds, on the leaflet there is space for you to write their names, this includes

• Breast Surgeon (doctor who does your operation)
• Oncologist (doctors that give chemotherapy and radiotherapy)

The Oncology doctors work as a team, you will not see the same Oncologist at each visit.

• Keyworker also known as your Breast Care Nurse (BCN)

The BCN’s work as a team, you will not see or talk with the same nurse each time.

• Research Nurse

Information regarding your care in Leeds is kept on a central database called PPM+ (patient pathway management or electronic health record). Your GP and other members of your healthcare team may be able to see your records.

You will be sent a copy of your clinic letters which will outline your diagnosis and treatment (care plan), your GP will also be sent copies. If you do not want a copy tell the person you are seeing, if you do not get a copy let us know and we can get you one.

Bring this booklet with you on your admission to hospital as it includes your discharge information – the ward staff will go through this with you to plan and prepare for a safe and informed discharge.

How your care is planned in Leeds

Multi-disciplinary Team or MDT

Your treatment is planned by a group of health professionals who are specialists within the field of breast cancer. This group is known as the Multi-Disciplinary Team or MDT and their role is to provide safe and high quality care specific to you. MDT meetings take place twice a week and decisions and recommendations will be discussed with you at your appointments.

We want you to ask questions and raise concerns you may have about your diagnosis, treatment and care with any member of the breast MDT. There are contact numbers throughout and at the back of this booklet.

Keyworker or Breast Care Nurse

The role of your Keyworker who is also your Breast Care Nurse (BCN) is to provide support and information based on your individual needs.

Your BCN is part of a team which includes a cancer care co-ordinator and a secretary. If your BCN is not available another member of the team will be there to help.

The Breast Care Nursing team will utilise their knowledge and experience to help you manage concerns or worries you have in the hope of reducing anxiety associated with your diagnosis and treatments.

If you need chemotherapy your Keyworker will change to the chemotherapy nurse specialists for the duration of your treatment. On completion of your chemotherapy, your BCN will be your Keyworker again.

You can still talk to your BCN during chemotherapy, ring them if you need to.

The relationship you have with your Keyworker/BCN/Breast Care Nursing Team is important. If you would like to talk to a specific BCN ask for them in person when you leave a message on our helpline 0113 206 8623. If you want a different key worker, let us know.

We aim to be supportive of your individual needs – if we are not achieving this, tell us.

Constructive feedback is welcomed.

Support services

Getting a diagnosis of cancer can be very distressing and cause financial difficulties. Below are some of the services you can access for emotional and practical support. None of us get everything we need from one place so do try different things.

Contacts for Help and Support

The Robert Ogden Macmillan Centre

The Centre is on the St James’s Hospital site and offers a variety of support services including counselling, support groups and complimentary therapies. These therapies include Reiki, relaxation, visualisation, hand and foot massage and many others. When we open you can drop in for a coffee and a chat anytime.

Maggie’s Yorkshire Centre

Maggie’s is at the side of St James’ multi-storey car park and offers support to patients and their loved ones affected by cancer. They have a range of experienced professionals to listen to how you’re feeling, answer any questions and guide you to the right information.

Such specialists include

• Experienced Cancer Nurse
• Psychologist
• Benefits Advisor
• Sessional staff

They also have range of activities you can take part in such as

• Yoga
• Pilates
• Look Good Feel Better

You do not need an appointment, just pop in for a cup of tea or coffee.

Leeds Cancer Support

The Leeds Cancer Support Service at St James’s Institute of Oncology in Bexley Wing is here to help you and your family. We aim to offer high quality information, advice and support, to patients, families and friends.

We have a large selection of information leaflets, Macmillan Cancer Support booklets and fact-sheets. We also have visual and audio aids and assisted internet access for patients and visitors. Please come and browse or just drop in for a chat.

The two information lounges are situated on:

Breast Cancer Now

Breast Cancer Now have many services including patient information and the “Someone like me” Programme – this links you with someone who has had a similar experience to yourself. Ring them if you thing this will help.

Macmillan Cancer Support

Transport and Travel Expenses

Make sure you have appropriate transport arranged to and from the hospital and someone to help you if needed.

If you are on benefits you may be entitled to claim travel expenses; check the patient information leaflet in your pack.

If you have one or a combination of the following you may be eligible for hospital transport

• Require a stretcher for the journey due to specific medical and mobility needs.
• Require oxygen during transit
• Need to travel in a wheelchair and do not have a specially adapted vehicle
• Cannot walk short distances without continual physical support
• Have a medical condition that would compromise your dignity or cause concern to the public
• Have severe communication difficulties

Moving Forward

The completion of your treatment for breast cancer can be a difficult time. While others around you may be celebrating, you can be left wondering what has happened and may feel low, alone and even abandoned. To help with this at the end of your treatment (excluding endocrine therapy or targeted therapy that has to continue for a long time) we invite you to attend a Moving Forward programme managed by Robert Ogden Centre, St James Hospital.

The Moving Forward Programme is designed to give you a chance to talk about what matters to you following your diagnosis and treatment for breast cancer.

The session gives you a chance to debrief, reflect on your experience and ask any questions you may have about any part of your experience – there is no such thing as a silly question.

You can talk about how you are feeling, managing side effects and to hear how others are coping; a chance to share and know you are not alone; a chance of gaining a better understanding of what just happened to you and what the future might hold.

You might not want to talk – and that is also fine – you can listen. In feedback from the sessions it is often stated how much participants get from listening to each other.

A Breast Care Nurse Specialist and possibly a member of the Robert Ogden Centre is present at each session to facilitate the conversation. We can answer questions and clarify information you already have.

It is our opportunity to remind you of the services that are still available to you and will continue to be available to you at any time in the future as we recognise this is a life changing experience that can raise concerns/questions for you at any time during the rest of your life.

You have open access to the Breast Care Nursing Team for any concerns relating to your diagnosis and treatment for breast cancer.

Our aim is to be as supportive as we can be and to sign post you to the service(s) that would be of best help to you when appropriate to do so.

Other services such as Maggie’s, Macmillan and Breast Cancer Now also offer Moving Forward programmes and information, look online or ask your Breast Care Nurse for more information.

Surgery

The main aim of surgery is to remove the breast cancer from your breast, this can also include your axilla (armpit) if tests have shown it is positive. If you have a negative axilla, it is to check if cancer is there. There may be different surgical options for the breast and your surgeon and BCN will go through this with you.

Finding the Sentinel Lymph Node

What happens next?

The pathologist will examine the sentinel lymph node(s) under the microscope; this may take up to 3 weeks. If the sentinel node(s) contains cancer cells the MDT will discuss the best management plan – you may need further surgery to remove remaining lymph nodes (axilla node clearance), radiotherapy or nothing else will be needed to your armpit.

The Breast

What if the surgeon cannot feel the cancer ?

If the surgeon cannot feel the cancer in your breast and you are having breast conserving surgery, you will need a Magseed or Guide Wire Localisation placing before your operation to make sure the surgeon removes the cancer. This is done in the Breast Unit, Breast Imaging, First floor Chancellor Wing, St James.

Guidewire Localisation

What is a Guidewire localisation ?

The placing of a wire into your breast to guide the surgeon to the part of the breast that needs to be removed. The wire placed will be as close as possible to the cancer in the breast. The guidewire can be placed on the same day as your surgery or the day before.

Before your Operation

You will need a pre assessment appointment before your operation. The pre assessment team will telephone you or send you a letter. Where possible the pre assessment will be over the telephone, you will then be invited to any of the hospitals in Leeds (mainly LGI) to have other tests needed to prepare you for your operation.

Checklist prior to coming into hospital

If you are taking the following medication

Blood thinning medication:-

Have you been told if you need/or when to stop taking?

• Aspirin
• Clopidogril
• Warfarin
• Apixaban

Have you been told if you need/or when to stop taking ?

• Diabetic tablets
• Insulin

After the operation

When you return to the ward you will be on a trolley if you are having a day-case procedure and a bed if you are staying overnight. Nursing staff will check your blood pressure, temperature, pulse and wound regularly (observations). When your pain is controlled, you have eaten, drank and passed urine, and there are no obvious problems with your wound(s) you can go home. This is generally 2 to 4 hours after you have returned to the ward following your operation. Make sure you have someone to collect you with appropriate transport. If you need and are eligible for hospital transport to get home, nursing staff will arrange this for you.

How to De-Vac, Empty and Re-Vac the J-VAC Reservoir

Step 1

To de-vac the drain:

Relieve the negative pressure by opening the exit plug (the single bung). This will completely expand the reservoir and the contents may be emptied and measured.

Clean around the plug with an alcohol wipe.

Step 2

To re-vac the drain:

With the bung still removed, place thumb/fingers around the centre of the drain (in the marked area indicated on the drain) and squeeze plates together ensuring that the central window clicks firmly into place.

Step 3

Replace the bung

Step 4

Whilst holding the drain in one hand, pull the bottom paddle towards yourself. The container will pop and partially expand to create a vaccum.

THIS IS THE CRUCIAL ELEMENT OF THE PROCESS!!!

Without completing this important final step, the drain will not provide suction and may cause serious post-operative complications for the patient.

Seroma

A Seroma is a collection of fluid which occurs at the operation site causing swelling. This is normal and nothing to worry about; the fluid will be reabsorbed by the body. This can take weeks and sometimes months: Rarely seroma can be permanent.

We do not routinely drain seroma’s as there is a potential risk of introducing infection.

Occasionally a seroma causes extreme skin tightness which limits arm movement, prevents sleep and is painful even with pain killers. At this point we would drain the seroma for you. We do this by inserting a needle into the swollen area and syringe the fluid away; this is not usually painful as the site is often numb. Unfortunately the fluid can return and the seroma may have to be drained more than once.

Rarely, the wound may open slightly and the fluid causing the seroma leaks out. This can feel very scary and not very pleasant but it will not do you any harm, you may even feel better for the fluid coming away. If this happens you need to ring the ward 0113 206 9123 or Breast Care Nurses 0113 206 8623 for advice as it is often a sign of infection.

Anti-embolism stockings (TEDS/AES)

You will wear anti-embolism stockings for 2 weeks. You can remove the stockings for a few hours if you are mobilising, otherwise keep the stockings on especially on bed. They can be washed in a washing machine but please do not tumble dry them as they will shrink.

Returning to normal activities:

This will depend on the type of surgery you have, your usual level of activity, how your body responds to the surgery and your personality. We recommend you listen to your body and gradually return to your normal lifestyle at your own pace. If you are struggling with anything (physical or psychological) it is important to take a step back and try again later. There is no right answer to this, it is a case of pushing yourself a little but also resting when you need to, we are all different.

Follow-up appointments:

Your surgical clinic appointment will be 2-3 weeks after your surgery.

If you have not got this appointment 10 days after your operation ring J23 on 0113 206 9123 or the Breast Care Nursing Team 0113 206 8623.

The appointment will come in the post or you will be told over the phone if you have had to ring in for it. This appointment can be over the phone, virtual or face to face – let us know which you prefer. A friend or family member can join you for this appointment.

At this appointment the Dr will ask you about your wound, how you are feeling and what your movements are like. You will be given your histology – what was seen under the microscope and what other treatment you may need.

Often people have more questions after their appointment – ring the Breast Care Nursing Team and they can go through these questions with you.

Oncology appointment

It is common to need some form of other treatment following surgery for breast cancer. The Doctors who give these treatments are called Oncologists.

You may get an appointment for the Oncology team before your surgical appointment. You might not need to see the surgeon if this happens, discuss this with your BCN.

Prosthetic Fitting

If you have had a mastectomy (removal of the breast) or your breast is noticeably smaller than the other side the Ward Nurse will fit you with a “softie” (lightweight temporary breast shape or prosthesis) before you go home. Ask for one this if it is not offered.

You can come for a fitting of your permanent prosthesis when your wound is fully healed and any swelling has gone down. This could be anything from three to eight weeks after surgery or may be longer. If you still have swelling when you come for your fitting another appointment may need to be made, this is to avoid asymmetry when the swelling goes away. If it looks like the swelling is going to stay for a long time or permanently (8 weeks or more) we will fit with the swelling there. Talk to your Breast Care Nurse if you have questions about this.

• You can have a new breast prosthesis whenever you need one, it is not based on the amount of time you have had it.
• Prosthetic fitting is in The Breast Unit, First Floor Chancellor Wing, St James on Wednesdays.
• Ring the BCN helpline to book an appointment or for a replacement – details under Useful Contact Numbers

Useful contact numbers

Speak slowly and clearly as we have to write down what you say. Leave your name, date of birth, NHS number and your telephone number.

If you want to speak to a specific person please leave their name.

We aim to ring back the same day if possible but if you do not hear from us within 24 hours please ring again.