Frequently asked questions

It’s completely normal to have lots of questions after being diagnosed with Follicular Lymphoma – or any other type of cancer for that matter.

Being diagnosed with an illness can come as a shock, especially if you weren’t experiencing any symptoms beforehand as is often the case with Follicular Lymphoma. It can take some time to get your head around your diagnosis, as well as what this could mean for your future. You’ll definitely have questions – lots of them. Your doctor will do their best to provide as many answers as possible, don’t be afraid to ask them what you want to know.

In the meantime, here are some of the most commonly asked questions about Follicular Lymphoma and their answers.

How will the cancer physically affect me?

The main symptom associated with Follicular Lymphoma is fatigue. Fatigue is much more than simply feeling tired. It is a level of exhaustion that means that you find even basic day to day activities, such as walking upstairs or making a cup of tea extremely debilitating. Many people experiencing cancer fatigue can sleep for as many as 16 hours per day, often still feeling tired afterwards. However, it is also common to suffer from insomnia because they feel anxious or stressed, and a lack of sleep can be equally as incapacitating.

If you’re experiencing fatigue, make sure to discuss this with your doctor. For some FL patients who may not otherwise need treatment, fatigue might change that decision to see if treatment of FL may make you feel better.

It’s important to try and take fatigue one episode at a time. Some people try and push past it by going out for a walk or taking part in an activity that boosts their mental wellbeing. Others find that the only thing that makes them feel better is to take a nap.

Whether you choose to fight the fatigue or embrace it, never feel bad about doing what you need to do to make you feel better.

Is it normal for my emotions to be all over the place?

Absolutely! Everyone with Follicular Lymphoma is different and even someone who usually keeps their feelings tightly in check can find that they experience a rollercoaster of emotions following a cancer diagnosis. This is especially true if you didn’t have any symptoms beforehand.

There is no limit to the number of emotions that you might experience, or the order in which you might experience them. The feelings you have may be short-lived or last for weeks or months. It’s also normal for them to change considerably over the course of your Follicular Lymphoma journey. Initially, many people experience anxiety and fear not knowing what the future might hold, especially if you have children or other people who rely on you.

During periods of treatment, many people go into what is sometimes called ‘warrior mode’. This is where they channel all their thoughts and energies into fighting their disease and they may seem unwaveringly positive and upbeat. However, after treatment ends, they may experience a sudden dip in their moods as the enormity of what they have been through hits them.

Some medicines, especially steroids like prednisone, can amplify the ups and downs of your feelings as well.

Some people also experience something called ‘scanxiety’ which refers to the fear and apprehension that can accompany preparing for tests and waiting for test results. This can even manifest in physical symptoms including stomach pain, nausea, breathlessness, dizziness, sweating and rapid heartbeat.

It’s completely normal for your emotions to be all over the place, just try to take each day as it comes.

Will I be able to go to work as normal?

The answer to this question depends on so many different factors, including what you do for work, how Follicular Lymphoma affects you and if having treatment, what treatment you are having. It also depends on your tolerance to your treatment and the degree of side effects you experience.

Many people have no choice but to continue working as much as possible, only taking time off for the treatment itself and if the effects means that they are too ill to work. Some people find that going part time, or working from home, gives them greater flexibility to maintain their career and earn an income, while also being able to prioritise their self-care when necessary.

If you are worried about the effects of Follicular Lymphoma on your ability to work, speak to your employer to explain the situation and see what can be done to support you.

How do I tell my children I have cancer?

It’s never going to be easy to tell your children that you have cancer, but most people agree that honesty is the best policy. After all, children pick up on behaviours and hushed conversations much more quickly than we usually give them credit for.

Depending on their ages, you might not have to explain your condition in detail. For example, if you have very young children, it might be best just to explain that you are feeling poorly and need treatment to help you get better. The word ‘cancer’ can be scary, even for kids as young as 6 or 7. Don’t feel you need to use the word if you don’t want to.

Remember that young children often ask questions and make statements without a filter. This means that they could ask difficult questions in a very harsh way, for example ‘are you going to die’. Be prepared for how you are going to answer such questions before you tell them, so that you don’t regret the response that you give later on. Older children and teenagers may appear disinterested or appear not to care, but this is often a defence mechanism to hide their real feelings.

We recommend that you speak to your child’s school as soon as possible too. They may exhibit different behaviours when they aren’t with you and knowing what’s going on at home may help the school to understand these. Most schools also have pastoral teams in place to help support children going through difficult times at home, including the illness of a parent or close family member.

Is there any financial support available?

Suffering from an illness like cancer can really impact your earning potential, especially if your treatment makes it difficult for you to work. Making changes such as going part time or working from home can help, since it can mean less hours, commuting and the ability to be flexible around periods of illness.

If you do find that you are struggling to meet your financial commitments, it’s worth reaching out for support. There are some cancer charities that can offer support with financial difficulty caused by illness, and other organisations that can offer support with housing and medical assistance. Ask your doctor or other healthcare professionals to signpost you to people and charities that can help.

Will Follicular Lymphoma affect my fertility?

Although the cancer itself will not affect your fertility, some of the treatments that you are recommended to consider may have a variety of consequences, including your ability to conceive in the future.

Women’s fertility is largely dependent on age, and their natural fertility will start to reduce as they get older. Cancer treatments can cause a female’s eggs to age faster, and in some cases, trigger early menopause. Similarly, the quantity and quality of sperm can be negatively affected by some cancer treatments.

If you are worried about the effect of cancer treatments on your ability to conceive in the future, you may be able to have your eggs frozen, or retrieved and combined with your partner’s sperm to create an embryo that is then frozen. Males may be able to explore sperm banking, which is the collection and storage of semen for use in the future. If these concerns apply to you, it is important to discuss these options before starting any new treatment.

Can I travel abroad?

Going away on holiday and getting away from it all for a few days or more can be a great way to take your mind off your Follicular Lymphoma. However, before you go, there are some things that you should think about.

While a cancer diagnosis doesn’t necessarily prevent you from travelling, it’s always best to check with your haematologist or oncologist before going away, even if you are only visiting somewhere else in your own country. It may not be advisable to travel while you are undergoing treatment, and even if you are in remission, there may be issues around the vaccinations you need, drinking local water or even being exposed to the sun that you should be aware of.

Today we must also consider how COVID adds to concerns about travelling. Patients with FL, even without any treatment, are considered somewhat immunocompromised. Vaccines should be administered but may not work as well, and this will change based on your FL and any prior treatments. Your medical team can help you assess your risk based on when and where you plan to travel.

Whether or not travelling is advisable will depend on where you intend on going, for how long, how your Follicular Lymphoma affects you and where in your treatment journey you are. Speak to your doctor beforehand and be sure to ask any questions that you may have, including a plan for what to do if you do become ill while away.

Will I be covered by insurance if I take a holiday?

Travel insurance is strongly recommended for everyone, regardless of their health. However, travel insurance can be more expensive for people with a pre-existing health condition. This is because it can become costly if you become unwell and require treatment when you are away.

Your insurance company will take into account your specific diagnosis and the stage of your lymphoma when organising your cover. It’s essential that you are honest when answering the questions that are put to you, including listing any medications that you are taking and when you last underwent treatment.

It’s always worth getting multiple quotes for your travel insurance to help get the best deal and remember to read the policy carefully to make sure everything is correct, otherwise you could find that you aren’t properly covered.

Announcing: New funding of $2 million for research to get one step closer to a cure for Follicular Lymphoma.