Just diagnosed with blood cancer?
Just diagnosed: blood cancer and your emotions
A blood cancer diagnosis can have emotional consequences as well as physical ones, and you might feel a range of different emotions at different times.
Coping emotionally with a blood cancer diagnosis
Being told you have blood cancer is a life-changing event. So if at any time you're find you're struggling emotionally, it's completely understandable. But there are coping strategies you can try – it's about finding what works for you.
A good place to start is connecting with people who've been diagnosed with blood cancer and have found a way through it. You'll find ideas and advice on our online community forum.
We have more information and personal stories about coping emotionally with blood cancer.
Thank goodness for the Blood Cancer UK forum where we can share our highs and lows.
- Maria, diagnosed with T-cell large granular lymphocytic leukaemia (T-LGLL)
I found out I'm not alone
Joining our online forum helped Emma connect with people who understood
Talking to your healthcare team
Your healthcare team is there not just to support your physical health but also your emotional wellbeing. Don’t be afraid to start a conversation with them if you're struggling to manage difficult feelings. They won't be surprised and will do their best to help.
Your healthcare team may be able to refer you for counselling, which many people with blood cancer say they find helpful.
Read our page about blood cancer, mind and emotions for more information and ideas.
Waiting for test results
If you’ve just been diagnosed with blood cancer, you’ll have tests at key points to find out more about the cancer and how to treat it. You may be waiting for test results right now to confirm your full diagnosis.
These times are always difficult, as waiting for test results usually means worrying about them.
Many people find the most helpful thing is to talk to someone. You can speak to your keyworker (usually a specialist nurse) or contact our Support Services Team by phone 0808 2080 888 or email [email protected] (Monday to Friday, 10am–7pm and Saturday and Sunday, 10am–1pm). 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 how you feel.
I learned to live day by day. If I felt panicked, I would try to concentrate on the next 24 hours. It stopped me worrying about tests that were weeks off.
- Louise, diagnosed with Hodgkin lymphoma
Telling other people
It can be stressful having to explain your diagnosis to family, friends and colleagues. Some people feel guilty about upsetting the people closest to them, and it can be painful to have to talk about something you don’t want to believe is happening to you.
Talking to others who’ve been in a similar situation can help to normalise whatever you’re feeling, as others will have felt the same way. You may find our online community forum a good place to start.
People find different ways to make it easier to tell others what’s happening. Here are some things that you could try:
- Ask one close person to be your “information person” whose job it is to keep other people updated.
- Set up a blog or Facebook page, so you or your family can share news more widely.
- Get a booklet about your condition and pass it round so people understand more about it. We can send you an information booklet about your condition for free.
- Send people a link to understanding blood cancer on our website.
I was diagnosed two days before Christmas. I was scared I'd ruin the season for everyone, but telling my family was the best decision. They came to every appointment.
- Wendy, diagnosed with follicular lymphoma
How to explain a blood cancer diagnosis to children
If you’re worried about explaining things to children, contact our Support Services Team on 0808 2080 888 or [email protected]. Or visit our online community forum to find out how other people have managed in a similar situation.
Don't feel like talking?
It’s 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.
Impact on your loved ones
If you have children or are a carer for other family members, you’ll also be concerned about how your diagnosis will affect them.
Start by asking your healthcare team what your treatment plan is, and how it will affect your day-to-day life. There may be choices that will make life easier for you. For example, it might be possible to have some of your treatment locally if you’re under the care of a hospital that’s a long way from home.
Friends and family will want to help you – don’t be afraid to accept their offers. It’s a good idea to give people specific roles such as asking someone to look into sick pay and other benefits you may be entitled to. Others may be able to help with childcare or caring for a relative. This could be on a regular basis or as a stand-by if, for example, you have an unexpected hospital stay because of an infection.
We have more information about financial support for people with blood cancer, including working during coronavirus. We also have information for family and friends about how to help, while looking after themselves too.
What if I don't have a support network?
If you don't have family or friends around you, talking to other people with blood cancer may help. Our online community forum is a safe place to share how you're feeling and get emotional support and guidance from people who understand.
We have more information on emotional and practical support during the current coronavirus pandemic.
Talk to other people affected by blood cancer
Hear from and connect with people who understand.
Why have I got blood cancer?
We still don’t know what causes most cases of blood cancer. We know that it starts with changes in our DNA that happen in our lifetime – they're not inherited from our parents or passed on to our children. These change are called mutations.
DNA is like a set of instructions within every cell in your body, which tells your 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).
You can’t catch blood cancer or give it to someone else. To find out more about risk factors for different types of blood cancer, select a blood cancer type. Risk factors are things that may make it more likely for someone to get a particular disease.
If you're struggling to come to terms with your diagnosis, there is help at hand. You can speak to your healthcare who are best placed to answer your questions. You can contact our Support Services Team on 0808 2080 888 or [email protected] (Monday to Friday, 10am–7pm and Saturday and Sunday, 10am–1pm), but you can call us anytime and leave a message and we'll get back to you within one working day.
You can also talk to people who understand on our online community forum, or just read the helpful posts on there.
Does my family need to be tested for blood cancer?
Some research studies have shown that people who have a family member with blood cancer may have a slightly higher chance of getting it than people who don’t have any family members with blood cancer. But the risk is small. It’s very unusual to find more than one person with blood cancer in the same family.
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.
Make plans for when the treatment is over, so you’ve got something to look forward to. That definitely kept me going.
- Iwona, diagnosed with Hodgkin lymphoma
Worried about anything or have questions?
Contact our Support Services Team
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Watch and wait
Monoclonal gammopathy of undetermined significance (MGUS)