Just been diagnosed with blood cancer?
If you or someone you know has just been diagnosed with leukaemia, lymphoma, myeloma or another type of blood cancer, you’re bound to have lots of questions.
You’ll find answers to some of the most frequently asked questions below. If you have other questions or would like to talk anything through, contact our Support Services Team.
We also have information about specific types of blood cancer. You can select a type.
Coronavirus and blood cancer
Coronavirus information for people affected by leukaemia, lymphoma, myeloma or any blood cancer.
Frequently asked questions
Blood cancer often affects the immune system, which normally helps the body fight off infections. So a blood cancer diagnosis means you’re at higher risk from coronavirus.
It’s highly likely that medical staff will advise you to stay at home (shield) for the next few weeks, and only leave the house for medical appointments.
We have more information on blood cancer and coronavirus, shielding, and how to get food and medication on our coronavirus web pages.
Speak to the team who diagnosed you, or your GP, about what you should do to protect yourself. You can also contact our Support Services Team on 0808 2080 888 from Monday to Friday, 10am to 7pm, and Saturday to Sunday, 10am to 1pm, or email [email protected]. This is a worrying time and we’re here to help.
With some blood cancers, treatment is aiming for a cure. The first step is to put you in remission, where there’s no sign of cancer left, or the level is so low it’s no longer a problem.
Other blood cancers are chronic and can’t be cured, but can be managed with ongoing treatment so you can enjoy the best possible quality of life.
You can ask your healthcare team at any time about the aims of treatment, and what’s likely to happen in the future (your prognosis). This will depend on the type of blood cancer you have and things that are personal to you, such as your overall health.
We have information about different types of blood cancer, including the general prognosis for each type. Select your type.
You‘ll have tests before you start treatment to find out as much as possible about the particular kind of blood cancer you have, and to check your general health. This helps doctors work out what treatment is best for you. When you start treatment, you’ll have regular tests to see how things are going.
Tests might include blood tests, scans or biopsies (where a small sample of tissue is taken from a bone or gland). We have more information about what blood cancer tests involve.
Waiting for test results usually means worrying about them. Many people find the most helpful thing is to talk to someone about their anxiety. You can contact the Blood Cancer UK Support Services Team by phone or email – they’ll be happy to listen and give you emotional and practical support. You can also join our online community forum to talk to people who’ve been there and will understand exactly how you feel.
If you are diagnosed with a very acute (fast-growing) blood cancer, you will usually start treatment within a few days. Other types of blood cancer develop more slowly, so it may be a few weeks before you start treatment.
Some people with chronic (slow-growing) blood cancer may not need treatment. They’ll be put on 'watch and wait', which means having regular tests and check-ups but no treatment. This is often recommended if you have few or no symptoms, and the side effects of treatment could make you feel worse. Being on watch and wait doesn’t affect the outcome of any treatment you have in the future, and it’s better for your general health if you only have treatment when you need it.
It can be frightening and confusing to be told you have blood cancer but won’t start treatment for it. We have information and support on living on watch and wait to help you. You can also join our online community forum to connect with other people on watch and wait.
There’s a range of treatments for blood cancer. Before your healthcare team recommend treatment, they’ll consider:
- the type of cancer you have
- your general health and the results of any tests you’ve had
- what treatments are available and how well they work
- any risks or side effects.
- whether there are any relevant clinical trials available
They’ll also discuss with you:
- the benefits versus the risks of the treatment
- the chances of the blood cancer getting worse or coming back after treatment
- your thoughts, feelings and wishes.
We have an overview of the types of treatment used for blood cancer.
You may have other treatments such as anti-sickness drugs, painkillers and blood transfusions to help manage the symptoms of blood cancer or the side effects of treatment.
The side effects of blood cancer treatment depend on the type of treatment you have, and on your own health and circumstances. So two people who have the same treatment can have different side effects. Your healthcare team will let you know about possible side effects and how to manage them. Make sure you tell your team as soon as you notice any changes in how you feel, as they will do everything they can to help.
Some blood cancer treatments can affect your fertility, but there may be ways to increase your chances of having a child when you’re ready. These can include freezing eggs or sperm.
If you know you want to have children, or think you may want to in the future, discuss it with your healthcare team before you start treatment.
Talking things through gave me renewed hope
How calling our support line helped Adrian to help himself
If you’re having active treatment, you’ll have a healthcare team to look after you, whether you stay in hospital or just visit for appointments. The key people in your healthcare team are your Clinical Nurse Specialist (CNS), who’s your main point of contact day to day, and your consultant, the specialist doctor who’s an expert in your condition. They’re part of a larger multidisciplinary team (MDT), who should get together to discuss your care at important points, such as when you need to start treatment. We have more information about your healthcare team.
Your healthcare team at the hospital will keep your GP informed about your diagnosis and any treatment you’re having. Your GP will still be involved in caring for your general physical and mental health.
Think about whether anyone can drive you to appointments, and if public transport is an option, ask you healthcare team if you will be well enough to travel in this way. It can be helpful to take someone with you to keep you company and take notes; as well as for support with travelling.
You may be able to get help with travel costs and some hospitals may offer their own transport in certain circumstances. Ask your healthcare team or contact our Support Services Team for help.
Taking blood cancer one day at a time...
Louise's advice on living in the here and now
It can be stressful having to explain your diagnosis to family, friends and colleagues. You might find it easier to ask one person to be your ‘information person’ whose job it is to keep other people updated. Another idea that works for some people is to set up a blog or Facebook page, so you or your family can share news more widely. Or you may want to get a booklet about your condition and pass it round so people understand more about your condition. We have free printed information on a range of different blood cancer types.
It’s also OK if you don’t want to tell people about your diagnosis – it’s your choice. Your healthcare team can’t pass on any details of your diagnosis or treatment without your permission.
Blood cancer can have emotional consequences as well as physical ones and you might feel a range of different emotions at different times. If you feel low, anxious or angry, talk to your healthcare team at the hospital or your GP. They may be able to refer you for counselling, although waiting times vary depending on the services where you live.
There are other ways to get professional support - contact our Support Team for more information. We also have stories and self-help tips to support you emotionally.
Eating healthily and staying active has been shown to help people with cancer both physically and emotionally. So try following standard advice on diet and exercise from a trustworthy source.
Smoking is especially harmful for people who’ve had chemotherapy, so if you smoke it’s best to give up or at least cut down. Your GP or healthcare team can prescribe nicotine patches if you decide to quit.
Although they can’t cure cancer, complementary therapies like massage, meditation and acupuncture may help you manage symptoms and side effects or help with stress. Speak to your healthcare team about whether a particular therapy is OK for you.
You may hear that particular foods or supplements will help you, but there’s rarely any proper scientific evidence to support these claims. Discuss it with your healthcare team before trying something new, to make sure it’s safe for you and won’t interfere with any treatment you’re having.
I found out I'm not alone
Joining our online forum helped Emma connect with people who understood
No, you don’t. But because the law gives you protection from discrimination, you might want to consider telling your manager or HR department. Then you can talk about changes to your role or working conditions that could help you carry on working, such as changes to your working hours, and having time off for medical appointments. And if you need extended time off, you will want to discuss how your employer can support your return to work.
Whether you can carry on working will depend on what sort of work you do and how the blood cancer and its treatment are likely to affect you. Your healthcare team will be able to advise you about how things might change for you physically and mentally, and how long your treatment is likely to last.
Hospitals sometimes have social workers or welfare rights advisors who can advise you on any benefits you’re able to claim. This might be especially useful if you’re on a low income or are unemployed. We have more information about work and blood cancer.
Finding support on social media
How Sam found a way to feel less isolated
Blood cancer isn’t caused by the way you live your life. You can’t catch it or give it to someone else.
We still don’t know what causes blood cancer. We know that it starts with changes in our DNA called mutations. The best way to think of DNA is as a set of instructions which tell our cells how to work properly. If there are mutations in your DNA, it means the instructions aren’t quite right and your cells can start growing out of control. This causes cancer.
With blood cancer, the cells growing out of control are usually in your blood, your bone marrow (where blood cells are made) or your glands (also called lymph nodes). Find out more about blood cells and your lymphatic system.
Some research studies have shown that people who have family members with blood cancer may have a slightly higher risk of getting it than people who don’t have any family members with blood cancer. But a risk isn’t the same as a cause – it’s just one part of a complicated set of circumstances affecting someone’s chances of getting a certain disease.
In a few rare cases, family members may need to have a blood test to check if there’s anything that makes it more likely for them to develop blood cancer. Most families won’t be offered tests because they don’t need them. If you’re worried about this, speak to your GP or hospital team.