When it comes to breast cancer diagnosis and treatment, this year has been a steep learning curve for cancer experts, as they have been working out which services they could safely continue and how best to deliver them.
Many women have felt wary as well – some may not have followed up on their symptoms, feeling reluctant to overload their GP or worried about having to attend a hospital appointment because of the risk of catching coronavirus.
Breast clinics around the country have reported big decreases in numbers of women attending. NHS figures show a 60% drop in urgent cancer referrals in the early days of lockdown from the same time last year.
It’s something that has alarmed many cancer experts, who are keen to convey a clear message that their services are very much open for business and they are doing everything possible to make them safe and accessible to everyone who needs them. Covid-free cancer hubs have been set up across the UK with the aim of delivering cancer services safely and effectively, and these are expected to keep operating for the foreseeable future.
We’ve put together a back-to-basics guide, designed to answer your questions and help you stay safe during this time. We recognise that it’s an ever-changing picture, but the message from everyone involved in breast cancer services is, if you’re worried about a breast change, take action immediately.
"There has been a huge amount of anxiety out there," says Addie Mitchell, clinical nurse specialist at Breast Cancer Now. "We’ve seen a large increase in enquiries to our helpline since March and we are urging women to keep checking their breasts and to contact their GP urgently if they are concerned. The earlier you are diagnosed, the greater the chances of successful treatment."
Will I get my regular breast screening?
During the worst of the pandemic, screening services in Scotland, Wales and Northern Ireland were officially suspended and most NHS trusts in England put them on hold.
Screening services are now resuming, but Cancer Research UK estimates that there is a backlog of more than 2m people waiting for breast, bowel or cervical screening. You can find out about the situation in your area by contacting your local screening service.
How can I keep myself safe from breast cancer?
Regular breast checks are always important, but they are absolutely vital when you may have to wait longer for your routine screening. Get to know your breasts. All breasts are different – some have natural bumps or nodular breast tissue, and women often have one breast larger than the other and breasts can change frequently during a woman’s lifetime.
Breast Cancer Now recommends the TLC check: Touch to see if you can feel anything unusual; Look for any changes; and Check any changes with your GP. Remember to include all breast tissue when you’re checking yourself, including the nipple area, up to the armpits and up to the collarbone.
Breast pain on its own is not usually a symptom of breast cancer – it may be caused by hormonal changes or pain from the muscle and ribs underneath the breast – but talk to your GP if you have pain that’s there all or most of the time.
Remember, the vast majority of breast changes are not caused by cancer, but it’s always important to check them out and speak to your GP.
"Follow up changes and trust your intuition; if you’ve been reassured but you’re still concerned, go back," says Jo Franks, a consultant breast and oncoplastic surgeon and trustee at Future Dreams, a breast cancer charity that funds awareness, support and research.
Never think you are wasting the doctor’s time. "I would much rather see people and be able to reassure them – if I have good news, it makes my day," she says.
Breast cancer signs and symptoms
- A lump or swelling in your breast, upper chest or armpit. You might feel the lump but not be able to see it
- Any changes to the skin such as puckering or dimpling
- A change in the colour of your breast, it may look red or inflamed
- A change to your nipple, for example if it has become pulled in (inverted)
- A rash or crusting around your nipple
- Any unusual liquid (discharge) from either nipple
- Changes in size or shape of your breast
What happens next?
Many GPs are still offering phone and online video consultations, where your doctor will talk through your symptoms and decide whether to refer you to the breast clinic. If the doctor does refer you, the clinic may call you first to talk through your symptoms, but if you are given an appointment, it’s important to keep it. Jo stresses that people should feel confident to go to breast clinics.
"I want to reassure women that we now have a streamlined system that takes into account all the risks, so always followup on symptoms because the sooner breast cancer is diagnosed, the more effective treatment can be," she says.
As well as examining your breasts and the lymph nodes under your arm and in your neck, you will have a series of tests that may include breast imaging (mammogram and/or ultrasound scan) and tissue removal through a core biopsy (a hollow needle is used to remove samples of tissue) or fine-needle aspiration (using a fine needle and syringe to take samples of cells).
Some hospitals offer one-stop clinics where all tests are carried out during your visit. You will get some results immediately, but may have to wait for others for up to a week.
What breast cancer treatment will I be offered?
If you are diagnosed with cancer, your treatment team will talk you through your diagnosis and the treatment options. Sometimes chemotherapy or other treatments are offered before surgery to shrink the tumour but in normal times, surgery – mastectomy or lumpectomy – is usually the first-line treatment.
This changed during the pandemic, because of the potential risks, and surgery was only offered to women who urgently needed it. For many others, delaying surgery or chemotherapy and prescribing hormone therapy was identified as the best course of treatment.
"The aim has been to prioritise women who have aggressive or difficult-to-treat cancers and make decisions about surgery, chemotherapy and radiotherapy based on the balance of risk to the individual," says Melanie Sturtevant, policy manager for Breast Cancer Now.
Many women with hormone-sensitive cancers who didn’t need urgent surgery have been given hormone treatments, such as tamoxifen or aromatase inhibitors such as letrozole, to manage the cancer until they have a date for surgery.
While this may feel worrying for many women, Jo is reassuring: "Understandably, many women want the cancer to be physically removed as soon as possible. It’s very difficult to have to wait and not have a date for surgery, but they should be reassured that hormone therapy is an effective way of controlling the cancer until they can have an operation."
When you get a date for your operation, you’ll find out if it will be a mastectomy or lumpectomy. Research shows that in early breast cancer, lumpectomy (breast-conserving surgery where the cancer and the surrounding breast tissue is removed) followed by radiotherapy, is as effective as mastectomy (removing the whole breast), and doesn’t affect survival rates. Having a mastectomy doesn’t reduce the risk of cancer in the other breast. The decision to offer lumpectomy or mastectomy is based largely on the size and position of your tumour.
Some women feel safer having a mastectomy and it may mean you can avoid radiotherapy but it is a bigger operation, with a longer recovery time. Also, for some women, losing a breast has a significant impact on their confidence and body image.
With a lumpectomy, the surgeon removes the tumour and a margin of normal tissue around it. This is a simpler procedure with a shorter recovery time, but you will then usually need to have radiotherapy. If a large area of tissue is removed, tissue may be taken from another part of your body to build up the breast or you may be offered surgery to reduce the sizeof your other breast.
What if I have a breast reconstruction?
In non-Covid times, women should be offered a reconstruction at the same time as their mastectomy, but this option was put on hold when breast surgeons switched to urgent surgery. Instead, women should have been given the option to have reconstruction surgery in the future.
"Realistically, some patients will have a delayed reconstruction and we are currently working out how we manage that," says Jo Franks. "What’s really important is that if women feel they want a reconstruction, they should ask. Some feel they shouldn’t because they should be grateful that the cancer has been removed."
There are pros and cons to reconstructive surgery. Reconstructions are either done using tissue taken from another part of the body or using an implant. It’s a big decision and it can take time to decide what’s right for you.
It usually involves two or more operations, and may leave you with little or no sensation in your breast as well as scarring. For some women, it helps them feel more confident and they like not having to wear a prosthesis, but others don’t want the additional surgery and the scarring if tissue is taken from another area of the body for the reconstruction.
What other treatments will I be offered?
After surgery the main treatments are chemotherapy, radiotherapy, hormone treatments (tamoxifen and aromatase inhibitors such as letrozole) and targeted therapies (for example, Herceptin).
The combination of treatments you are offered and the order in which you
have them will depend on whether you are pre- or post-menopausal, the size and spread of your cancer (its stage), whether it is slow or fast growing(its grade) and whether it has receptors for oestrogen (hormone/ER positive), progesterone or a protein called HER2 (HER2 positive). ER+ cancers may be treated with hormone therapies and HER2+ cancers with targeted therapies such as Herceptin.
Around 75% of breast cancers are ER+ and around 20% are HER2+. If your cancer has none of these receptors, it is known as ‘triple negative’ and you may be offered chemotherapy and radiotherapy as hormone therapies or targeted therapies, such as Herceptin, won’t be effective. Many clinicians now use computerised tools to help determine the most effective treatment for your individual tumour and reduce the risk of your breast cancer recurring.
If you are diagnosed with early ER+and HER2- breast cancer, you might be offered a tumour-profiling test, such as Oncotype DX. The test gives a picture of the tumour and the activity of certain genes in cancer cells, and the result indicates your risk of the cancer coming back and helps your doctor decide whether or not you need chemotherapy.
Radiotherapy is often given after surgery and/or chemotherapy. Many radiotherapy services were halted at the start of the pandemic leaving a backlog of patients needing treatment, but newly published research has found treatment can now be shortened from the standard 15 days to five.
A major clinical trial by the Institute of Cancer Research and the National Cancer Research Network has found that radiotherapy for just five days is as safe and effective as the 15-day treatment.
Who can I talk to about breast cancer?
For some women, the face-to-face support options that would normally have been there while they experience worrying symptoms or go through the process of diagnosis and treatment have not been available. At the time of writing, some hospitals are now allowing someone to go with you to consultations but not treatments.
If this isn’t possible, you can ask a friend or partner to listen in on phone/online consultations. They can take notes, remember the things that you forget and prompt you to ask the questions that slip your mind. If you’re attending a consultation on your own, prepare questions in advance then take notes or record the consultation.
Use Breast Cancer Now’s support services, which include the nurse-led helpline (0808 800 6000), or fill out anon line form at Ask Our Nurses and Someone Like Me, where you can be put in contact with someone who’s had a similar experience to you.
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