I've just been told I have blood cancer
Just diagnosed: what happens next
Being told you have blood cancer is a life-changing moment. After the initial shock, many people wonder "now what?" We aim to tell you more about what's likely to happen after a blood cancer diagnosis.
Now I'm diagnosed, who's in charge of my care?
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, a specialist doctor. Your consultant is usually a haematologist (an expert in blood diseases), although you could be seen by an oncologist (someone who treats cancer in general).
Your CNS and consultant are 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.
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.
If you’re on watch and wait (not having active treatment), your GP may be in charge of monitoring your condition.
Coronavirus and your blood cancer care
Since the coronavirus pandemic started, there have been changes to the way healthcare teams are seeing patients and giving treatment. This is to keep you safe while cases of coronavirus remain high.
At an already difficult time, any uncertainty about how or where you'll be treated can be hard to deal with. Don't be afraid to ask your healthcare team any questions which come to mind - you should have contact details for your Clinical Nurse Specialist (CNS) or another keyworker. Ask for contact details if you haven't been given any.
If you're not confident about talking to your team just yet, our Support Services Team can give you tips on how to get the information you need. If you'd like a family member or friend to talk to us, that's fine too.
We have information about how coronavirus is affecting blood cancer care, which you may find helpful and reassuring.
Tests you may have
You’ll have tests to find out about the type of blood cancer you have and check on your condition. You'll also have tests to check how well any treatment is working and to plan the next steps.
Doctors may run these tests on a sample of your blood, or a small piece of tissue, usually from a gland or your bone marrow. You may also have scans.
Your healthcare team will be on hand to explain what each test involves, why you need it, and what the results mean.
We have more information on tests for blood cancer.
If you're unsure about anything, get in touch with our Support Services Team who will be happy to talk things through. Contact us on 0808 2080 888 or [email protected]. We're open Monday to Friday 10am–7pm, Saturday and Sunday, 10am– 1pm. Or you can leave a message and we'll get back to you.
Taking blood cancer one day at a time...
Louise's advice on living in the here and now
Will I start treatment straight away?
If you're 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.
Starting treatment very quickly or having to wait for treatment are both difficult situations to deal with. Our Support Services Team is here to listen and help you process what’s happening – you can contact us on 0808 2080 888 or [email protected] to talk things through.
Some people with a chronic (slow-growing) blood cancer may not need treatment straight away. They’ll be put on watch and wait, which means having regular tests and check-ups but no treatment. This is often recommended if your symptoms are manageable, 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.
You can also join our online community forum to connect with other people on watch and wait.
Take heart if you are put on watch and wait – enjoy some normality for as long as you can. Then you will have more strength to handle treatment when required.
- Karen, diagnosed with primary cutaneous follicular lymphoma (PCFL)
If you need treatment for blood cancer, you and your healthcare team will consider the options, based on:
- 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.
You’ll also discuss:
- the benefits and risks of the treatment
- the aims of the treatment and the possible outcomes
- your thoughts, feelings and wishes.
This is a list of the main types of treatment that are used for blood cancer:
- Chemotherapy (chemo) uses drugs which kill cancer cells or stop them growing. Usually, chemo involves a combination of two or more different drugs. Sometimes, this combination includes drugs called steroids, which help treat the cancer or its symptoms.
- Targeted therapy involves drugs which work by targeting the genetic changes that cancer cells have, which normal cells don’t have. They can find and kill cancer cells, or block the chemical signals which tell cancer cells to keep multiplying.
- Immunotherapy uses your body’s own immune system to find and kill cancer cells. CAR-T therapy is a type of immunotherapy.
- Radiotherapy is treatment with radiation, which can be used to target blood cancer cells that cluster in a particular part of the body, forming a lump. You might also have radiotherapy before a stem cell transplant.
- Stem cell transplant is a treatment that uses high doses of chemotherapy, and sometimes radiotherapy, to wipe out all the blood cancer cells in your body, before giving you new healthy stem cells. The new stem cells can be your own or come from a donor, and are given to you through a drip. They will grow into new healthy blood cells in your body.
- CAR-T therapy involves taking white blood cells called T cells out of your body, genetically modifying them in a lab to make them more effective at killing cancer cells, and then putting them back into your bloodstream. CAR-T therapy is available for some people with certain types of blood cancer whose previous treatments haven’t worked.
You may have other treatments to help manage the symptoms of blood cancer or the side effects of treatment. These include anti-sickness drugs, painkillers and blood transfusions. You may also have injections of medicines called growth factors to boost your blood cell count.
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Common 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 tell you about possible side effects and how to manage them. Make sure you let your team know as soon as you notice any changes in your body or how you feel. There are often things that can be done to help, and spotting side effects early can make treating or managing them easier.
Read more about possible side effects of treatment.
I was advised to keep a diary of my symptoms and side effects. It helped me make the most of my appointments.
- Jacqueline, diagnosed with diffuse large B-cell lymphoma (DLBCL)
Can I still have children?
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, talk to your healthcare team as soon as you can, ideally before you start treatment.
Questions to ask your healthcare team
You'll probably have lots of questions about tests, treatment and your future. Sometimes these don’t come to mind until after an appointment, so it might help to think about them beforehand and write them down.
Your healthcare team are there to answer all your questions about treatment, side effects, how you’re feeling emotionally as well.
To help you start the conversation, we have some suggestions for questions you might want to ask:
- What tests will I have?
- What are the tests for?
- Where will I have them done?
- Are there any risks from having the tests?
- Will any of the tests be painful? Will I have painkillers?
- Do I need to know anything about preparing for the tests, for example, not eating beforehand?
- How long will it take to get the results?
- Who will explain the results?
- What is my exact diagnosis?
- Will I need to have treatment? If so, when?
- Is there a choice of treatments?
- Is there a clinical trial that I could join?
- What does the treatment involve?
- How effective is it likely to be?
- What could the side effects be?
- Will the treatment affect my ability to have children?
- How can I protect my ability to have children?
- How could treatment affect my everyday life?
- What happens if I decide not to have the treatment?
- What’s the best outcome I can hope for?
- Who do I contact if I feel unwell?
- Who can I contact if I have any questions?
- Who can I contact if I feel anxious or low?
Never be afraid to ask a question. It’s our responsibility to help you understand.
- Gill, Clinical Nurse Specialist (CNS)
What I wish I'd known...
Our blog, written for this year's World Cancer Day, looks at the things our ambassadors wished they'd known sooner about living with blood cancer.
Most people with a diagnosis of blood cancer will be under the care of the haematology department at their hospital. Haematology means the study of the blood. Sometimes people with blood cancer will be treated in the oncology (general cancer) department.
There are different types of hospital appointment you may need to attend, depending on your diagnosis and the reason for the appointment.
- Outpatient appointment: You may be seen as an outpatient, meaning you don't need to stay in overnight. This might be for tests or check-ups.
- Day unit appointment: You might visit the day unit one or more times a week to have treatment, going home in between appointments.
- Inpatient stay: Your treatment might mean you have to stay in hospital overnight or for a number of days. Your healthcare team should discuss this with you and let you know which ward you’ll be staying on.
You can ask your consultant or key worker (usually your clinical nurse specialist) what you need to bring to your appointments. Some people find it useful to bring a small overnight bag and toiletries even if they're not expecting to stay in hospital. This is just in case they’re unexpectedly asked to stay overnight, for example because of an infection or a high temperature.
It's also a good idea to have something to do while you're waiting or having treatment, particularly if you're on your own. People often take a book or a magazine, play games or videos on their phone, or bring an activity they can easily carry around such as knitting.
Definitely take a notebook to your appointments. There’s always so much to take in and questions you want to ask. Best way of remembering everything.
- Sally, diagnosed with acute myeloid leukaemia (AML)
Taking someone to your appointments
Many people find it helpful to take someone with them to appointments. There’s a lot of information to take in, so if you have a family member, friend or neighbour who's willing to go with you and take notes it can be a great support.
At the moment, you may be asked to go to face-to-face appointments on your own. This is because hospitals are trying to keep visitor numbers down while coronavirus cases remain high, but many people are finding this really tough.
We will do our best to help. Our Support Services Team will talk through any worries you have before and after your appointments and help you find ways to feel more in control. Contact them on 0808 2080 888 or email [email protected]
You can also read our information on how hospitals are protecting people during the coronavirus pandemic.
Getting to appointments
At the moment, the coronavirus pandemic is making travelling to and from appointments even more tricky than usual. Read our information on travelling safely during the coronavirus pandemic.
You may be able to get help with travel costs and some hospitals may offer their own transport in certain circumstances. Ask your clinical nurse specialist (CNS) or contact our Support Services Team for help.
Concerns about your care
If you’re unsure about the care you’re receiving, speak to your healthcare team in the first instance. They may be able to answer your questions and reassure you.
If you’re still unsure about your diagnosis or your treatment plan, you can ask for a second opinion from another doctor. It's not an automatic right, but your your GP or your specialist doctor (your consultant) will usually be happy to refer you.
If you aren’t happy with the care you’ve received, there are services that provide support and information for people who have concerns about their healthcare. In England this is the Patient Advice and Liaison Service (PALS), in Scotland it’s the Patient Advice and Support Service (PASS), and in Wales it’s the Community Health Councils (CHCs). Ask about these services at your hospital. In Northern Ireland, ask your hospital how you can raise a concern or complaint.
Worried about anything or have questions?
If you have any questions, worries, or just need someone to talk to, please don't hesitate to contact our Support Services Team via phone or email.
More information on Blood cancer
Blood cancer types
I've just been told I have blood cancer
What is blood cancer?
Blood cancer prognosis
Blood cancer tests
Blood cancer symptoms and signs
Blood cancer treatment
How does blood cancer start?
What causes blood cancer?
Blood cancer side effects
Watch and wait
Monoclonal gammopathy of undetermined significance (MGUS)
Blood Cancer UK health information