Finishing treatment for lymphoma is a big deal! You have overcome challenges you may have never thought you would be faced with, and probably learned a lot about yourself and what is important to you.
However, finishing treatment can come with challenges of its own. You may experience mixed emotions as you begin to work out who you are after cancer – or worry about how long you may be in remission for, and how to still enjoy life.
This page will discuss what to expect when treatment ends, and tips on how to manage life as it is now.
What to expect after finishing treatment?
Adjusting to life after lymphoma treatment can be a difficult time for many people. While finishing treatment can be a relief, many people say they’ve had challenges in the weeks, months and even years after treatment is finished.
After months of hospital appointments and regular contact with your medical team, it can be very unsettling for some, to only be seen once every few months or so. How often you continue to see your oncologist or haematologist will depend on several factors which include the below.
- The subtype of your lymphoma and any genetic mutations you have.
- How your body responded to treatment and if you have any side-effects that need ongoing monitoring.
- How long ago you finished treatment.
- Whether you had or have an aggressive or indolent lymphoma.
- Scan and test results.
- Your individual needs.
What support is available?
Just because you won’t be seeing your oncologist or haematologist as often, does not mean you are on your own. There is lots of support still available to you, though it may come from different people.
General Practioner (GP)
If you haven’t already found a regular local doctor (GP), now is the time to do it. You will need a regular and trusted GP to support you through your treatment, co-ordinate your care and provide important follow-up care after you finish treatment.
GPs can help by prescribing some medicines and referring you to different specialists and health professionals. They can also put together a care plan so you have a guide for when and how to get the support you need in the year ahead. Care plans can be updated yearly. Talk to your doctor about these plans and how they can help in your individual circumstances.
Click on the heading below to learn more about these care plans.
Lymphoma Care Nurses
Our Lymphoma Care Nurses are available Monday to Friday 9am to 4:30pm EST (Eastern States Time) to talk you through your concerns and offer advice. You can contact them by clicking the “Contact Us” button at the bottom of the screen.
Life coach
A life coach is someone who can help you set realistic goals and make a manageable plan to achieve them. They are not psychologists and cannot offer psychological support, but can help with motivation, organisation and planning as you adjust to life after lymphoma or treatment. To learn more about life coaching service see the link below.
Peer support
Having someone to talk to you who has gone through similar treatments can help. We have an online peer support group on Facebook as well as ongoing online or face to face to face support groups. To access these, please see the links below.
Survivorship or wellness centers
Many hospitals or doctors are connected to survivorship or wellness centres. Ask your haematologist what survivorship or wellness centres are available in your area. Some may need a referral which your GP can help you with.
These support centres often offer complimentary therapies, exercise and lifestyle classes (such as healthy cooking or mindfulness). They may also have emotional support such as peer support, counselling or life coaching services.
Treatment and side effects
Many side-effects of lymphoma treatments happen during treatment. However, in some cases side-effects may last for months or even years after treatments ends. Side-effects from intensive treatments such as the high dose chemotherapy used before a stem cell transplant are more likely to take longer to improve.
Late effects
In some cases, you may get late-effects from treatment that start months or even years after treatment ends. While many of these are rare, it is important to be aware of your risk so you can have the appropriate follow-up and screening tests and catch any new condition early for the best treatment options.
For more information on side effects and late effects of lymphoma treatments, click the link below.
When will you feel better?
Recovering from treatment takes time. Do not expect to be back to full strength or health straight away. For some people it can take months to recover from lingering side-effects. For some, you may never return to your full strength and energy levels as before you had lymphoma.
Learning your new limits and finding new ways of living will be important for you. However, just because life may now be different, does not mean you cannot look forward to good quality of life. Many people use this time to re-evaluate what is meaningful for them and begin to let go of extra stressors in life we often hold on to unnecessarily.
Things that can impact your recovery include:
- The subtype of lymphoma you had/have and how it impacted your body
- The treatment that you had
- The side-effects you had during treatment
- Your age, general fitness and activity levels
- Other medical or health conditions
- How you feel in yourself both mentally and emotionally.
Returning to work or school
If you plan to return to work, studies, it may not always go to plan. It is important to be realistic and give yourself time to recover. Click on the scroll boxes below for some tips on returning work or school.
Work
It's a good idea to talk to them before you return to work to start planning your transition back to work. If you do not have a HR department, speak with your manager about how they can help you return to work in a safe and supported way.
Scroll over the card to find some tips on returning to work
Tips for returning to work
Reduced hours, or alternative days.
Work from home options.
Social distancing while your immune system recovers.
Easy access to masks and hand sanitiser.
Avoiding substances that can cause infection such as animal waste, raw meats, infectious waste.
A quiet place to rest if you become too tired.
Occupational therapy to review your workspace and needs.
School
Scroll over the card to find some tips on returning to work
Tips for returning to school
Reduced homework.
Options to complete school work at home or through distance education
Socially distanced classroom.
Easy access to masks and hand sanitiser.
A quiet, safe place to rest if you become too tired.
Education for a classmates and school on lymphoma (invite Lymphoma Care Nurses to come and speak).
Extend due dates for assessments.
Fear of return (relapse)
Although lymphoma often responds very well to treatment, some of you will be told that it is likely your lymphoma will relapse at some time. In some cases, your doctor may say that it may relapse but that there is no way to tell if, or when it will return. Even if you’ve been told you are cured and its unlikely to come back, you may find yourself worrying about it.
It is normal to worry about this a little. You have been through a lot, and you may feel that your body already failed you once, so you may have less trust in your body’s ability to keep you safe and well.
This can cause hyperawareness, where you notice EVERY change in your body and start to become too focused on what is happening, fearing it’s related to lymphoma. Some people find it affects their ability to enjoy life and make plans.
Awareness versus hyper-awareness
Having awareness of your risk of relapse is important because it helps you identify new symptoms and get medical advice early. However, hyperawareness results in uncontrolled worry and fear, and has a negative effect on your quality of life.
Finding the balance between being aware of your risk and enjoying life to its fullest can take time. Most people say, the longer they are in remission the easier it gets to live with the uncertainty. Reach out and get support when you need it, or if you want to talk to through what you are feeling, or what is happening in your body.
Get support
You can speak with your GP, our Lymphoma Care Nurses, a counsellor or psychologist. They can all help you work through your fears and develop strategies for living with the reality of life after lymphoma treatment, while still enjoying life.
Report new symptoms to your doctor
As you learn what is now normal for you (after lymphoma treatment), it is important to report all new or ongoing symptoms to your doctor. It is important that your regular GP as well as your haematologist or oncologist are aware of any new or ongoing symptoms. They can then assess them and let you know if it is something that needs follow-up or not.
Ask your doctor:
- What should I look out for?
- What should I expect over the next few weeks/months?
- When should I contact you?
- When should I go to the emergency department or call an ambulance?
Emotional impact
It’s normal to have a mixture of feelings, and to have good and bad days. Some people describe getting cancer, having treatment and recovering, or learning to live lymphoma as a ‘rollercoaster ride’.
You may want to return quickly to your usual routines, or you may need time to rest after you finish treatment and process what your have been through. While some people prefer to ‘get on with it’, others say they want to learn to appreciate things more and prioritise what is important in their lives.
Whatever your approach is, your feelings and thoughts are valid, and nobody else can tell you what is right or wrong for you. However, if your emotions or thoughts are making it hard for you to enjoy life or make you fearful, reach out and get support. There are many support services and free counselling available to you.
Watch the video above for some tips on living with the emotional impacts of anxiety and uncertainty.
Expectations of others
You may have people in your life who think now treatment is over you should “just get on with life”, and not understand you still have physical and emotional limitations. Or on the contrary, you may have people in your life that try to hold you back because they are afraid of something happening to you, or of you “over doing it”.
Unless somebody has gone through treatment for cancer, there is no way for them to truly understand what you are going through, – and it would be unreasonable to expect them to. They may never truly understand the ongoing burden of side-effects or worry you live with.
Even people who have had cancer may not truly understand your experience, as cancer and its treatments affect people differently.
No matter how hard they try, there is no way for them to know exactly what you are going through, what you are struggling with, or what you are capable of.
Let people know
Often people try only to catch up with others when they are feeling well. Or, perhaps when you are asked how you are feeling, you gloss over the hard stuff and just say you’re doing fine, or ok.
If you’re not honest with people about how you are doing, how you’re feeling and what you’re struggling with, they will never be able to understand you may still need support – or know how they can help.
Be honest with the people closest to you. Let them know when you need support and that your experience with lymphoma is not yet over.
Some things you might like to ask for include:
- Cooking a meal you can keep in the freezer.
- Help with housework or shopping.
- Someone to sit and chat, or watch a game/movie, or enjoy a hobby together with.
- A shoulder to cry on.
- Picking up or dropping kids off at school or play dates.
- Going for a walk together.
What happens if my lymphoma relapses?
The first thing you need to know is that even many relapsed lymphomas can be successfully treated.
It is not uncommon for some lymphomas to relapse. Relapsed lymphoma can often be successfully treated, resulting in cure or another remission. The type of treatment you will be offered depends on several factors including:
- What subtype of lymphoma you have,
- How many lines of treatment you have had,
- How you responded to other treatments,
- How long you were in remission for,
- Any ongoing, or late-effects you may have from previous treatment,
- Your personal preference once you have all the information you need to make an informed choice.
To learn more about relapsed lymphoma, please see the link below.
Frequently asked questions (FAQs)
Summary
- Finishing treatment for lymphoma is a big deal, and you may experience mixed emotions for some time after your last treatment.
- You need a regular GP to provide ongoing support and follow-up care.
- You may still experience side-effects after treatment ends. Some may be ongoing side-effects, and some may start months or years after treatment ends. See the links above for how to manage side-effects.
- Ask your GP about a GP management plan, mental health plan and survivorship plan to help plan your health-related needs over the next year.
- Returning to work or school may take some extra planning. Use the tips above to help make the transition back.
- Fear of a relapse is common, but if it affects your quality of life and stops you planning a future, talk to your doctor, psychologist or our Lymphoma Care Nurses.
- A life-coach can help you set and achieve realistic goals.
- Report all new, or lasting symptoms to your GP and haematologist or oncologist.
- Let the people around you know you need so they can support you.
