For many people, their lung cancer may be incurable when it is diagnosed. In this situation the priority is giving the best supportive care possible. If you have lung cancer you and your family should be supported to:
- know what to expect
- know what care is available
- know who will be involved in that care
- plan ahead
Your health care team will include the hospital staff who have done the tests to diagnose your lung cancer. Other key staff include your GP, District nurse and possibly carers and community-based support teams. In different areas around Scotland there is variation in how local services are organised. This may be the same for what charity support is available and how social care or care at home is delivered. If you and your family can share in making decisions this will give you the chance to be well supported in planning your care ahead.
Deciding what’s right for you
This leaflet explains the supportive care pathway and may help in deciding what is right for you.
The MacMillan concerns checklist may be useful before speaking to your team so that you can be clear on what matters most to you.
What you should expect from your team
- Why supportive care ?
If a plan for supportive care is offered, you should be given enough information to understand why surgery, chemotherapy or radiotherapy is not helpful for you. It is important this is discussed clearly, and so that you have the chance to ask questions. - Communication
The hospital team should let your GP know what your care plan is so that this is clear to all your care providers. This will include what your needs may be and what your wishes are. Then if you require help out-of-hours at evenings or weekends this will all be clear in your records. - Assessing your symptoms
What is needed to support you will change over time. This might include treatment for your symptoms if you are breathless, in pain, losing weight or having other effects from your cancer. Often medication and support for symptoms will be manageable by the primary care team. If you do develop difficult symptoms, then referral to the hospital specialist symptom control (palliative care) team can be useful. - Addressing social care needs and support
This can be a challenging time for you and your family. Your illness may cause problems for you financially, in terms of work or suitable housing. You may also need community support to make adjustments in your home with modifications or equipment to help you. Across Scotland there are MacMillan Support Worker services which can help. You can ask your team what the local services are for this. - Future care planning
If your cancer means you may have limited time left, it is important that you and your family think about your priorities for that time. Your team – either in hospital or primary care – will work with you to agree a plan for your future care.
This will include:
- recording your wishes on what your main goals are
- what sort of treatments you would be willing to consider
- where you would like your end-of-life care to happen.
This can also include planning ahead for if or when oxygen may be required at home. There may be a need to ensure there is home delivery of prescriptions and that there are medicines available for you during this period.
It is important that you and your family understand that planning in advance does not mean that your outlook will be shortened in any way. Instead, this should be about enabling you to feel you are in control of decisions about your care.