Before anyone can see a specialist, a referral is required from a GP to that specialist. Referrals only last 1 year and then another appointment with the GP is needed to for a new referral.
Referral process
What Happens if Your GP Thinks You Might Have Cancer
If you’re not feeling well, your first step is usually to see your local doctor (GP). Your GP will talk with you about your symptoms and may send you for some tests, like a blood test or a scan, to find out more.
Your GP might not know for sure what’s wrong yet. They may not mention lymphoma, but if they think it could be something serious, like lymphoma or another blood-related problem, they will order more tests.
If those test results show you may have lymphoma or another blood condition, your GP should refer you to a specialist. This might be a haematologist (a doctor who treats blood disorders like lymphoma) or an oncologist (a cancer specialist).
Your GP can help you find a specialist, or you can ask to see one you already know or prefer.
What Happens Next and How Long You Might Wait
How long you wait to see a specialist depends on how urgent your situation is. Sometimes your GP will already have asked for tests like blood tests, a CT scan, or even a biopsy. Though not always. They will also write a referral letter to a haematologist or oncologist, often at the closest hospital.
But not all hospitals have haematologists/oncologists or the right equipment for certain scans and tests. This means you might need to travel to another hospital or health service for the care you need.
If you are very unwell, you may need to go to the emergency department. In this case, you might be admitted to hospital, and a haematologist will be called in to look after you.
Asking for a Second Opinion
You have the right to ask for a second opinion. This means seeing another GP or specialist to get their view. It can help you feel more confident about your diagnosis or treatment plan.
You can talk to your haematologist or GP about getting a second opinion. They can help refer you to another specialist. Some people feel unsure about asking, but doctors understand this is a normal part of making big health decisions.
If you do get a second opinion, make sure the new doctor gets copies of your test results—like blood tests, scans, or biopsies—so they have all the right information.
Public or Private Health Care?
Choosing Between Public and Private Hospitals
When you’re told you might have lymphoma or CLL, it’s important to understand your choices for care. If you have private health insurance, you can choose to see a specialist in either the private or public hospital system. Talk to your GP about what you prefer when they write your referral.
If you don’t have private health insurance, make sure you tell your GP. Some GPs might refer you to a private specialist without realising you want to use the public system. If that happens, you could end up with a bill to see the specialist.
Many haematologists work in both public and private hospitals. You can ask to see them in the public system if that suits you better. You can also change your mind later and move from public to private—or the other way around—if your situation or preferences change.
Health Care in the Public System
Benefits of the Public System
- The public system covers the cost of PBS listed lymphoma treatments and investigations such as PET scans and biopsies.
- The public system also covers the cost of some medications that aren’t listed under the PBS
like dacarbazine, which is a chemotherapy medication that is commonly used in the
treatment of Hodgkin’s lymphoma. - The only out of pocket costs for treatment in the public system are usually for outpatient
scripts for medications that you take orally at home. This is normally very minimal and is
even subsidised further if you have a health care or pension card. - A lot of public hospitals have a team of specialists, nurses and allied health staff, called the
MDT team looking after your care. - A lot of large tertiary hospitals can provide treatment options that aren’t available in the
private system. For example certain types of transplants, CAR T-cell therapy.
Downsides of the public system
- You may not always see your specialist when you have appointments. Most public hospitals are training or tertiary centres. This means you may see a registrar or advanced trainee registrars in clinic, who will then report back to your specialist.
- There are strict rules around co-pay or off label access to medications that aren’t available on the PBS. This is dependent on your state health care system and may be different between states. As a result, some medications may not be available to you. You will still be able to get the standard, approved treatments for your disease though.Â
- You may not have direct access to your haematologist but may need to contact a specialist nurse or receptionist.
Health Care in the Private System
Benefits of the private system
- You will always see the same haematologist as there are usually no trainee doctors in private rooms.
- There are no rules around co-pay or off label access to medications. This can be particularly helpful if you have multiple relapsed disease or a lymphoma subtype that doesn’t have a lot of treatment options. However, off-label medicines can get quite expensive with significant out-of-pocket expenses you will need to pay.
- Certain tests or work up tests can be done very quickly in private hospitals.
Downside of private hospitals
- A lot of health care funds don’t cover the cost of all the tests and/ or treatment. This is based on your individual health fund, and it is always best to check. You will also incur a yearly admission fee.
- Not all specialists bulk bill and can charge above the cap. This means there can be out of pocket costs to see your doctor.
- If you need admission to hospital during your treatment, the nursing ratios are a lot higher in private in hospitals. This means that a nurse in a private hospital generally has a lot more patients to look after than in a public hospital.
- Your haematologist it not always on site at the hospital, they tend to visit for short periods once a day. This can mean if you become unwell or need a doctor urgently, it isn’t your usual specialist.
Tips for Your Appointment
Hearing “You have lymphoma” can be hard and overwhelming. It’s normal to feel upset and forget what to ask. Here are some things that might help:
Write down questions before the visit.
Having your questions ready means you won’t forget to ask.Bring a notebook or phone.
You can jot down important information during the appointment.Take someone with you.
A friend or family member can support you and help remember what was said.Ask the doctor to explain things again.
If something isn’t clear, ask your doctor to say it in a different way. They won’t be offended—your understanding is their priority.
You may also like to download our Questions to ask your Doctor as a guide.
Summary
If you’re feeling unwell, your GP will usually be your first stop. They may order tests and, if needed, refer you to a specialist like a haematologist or oncologist. The time it takes to see a specialist depends on how urgent your case is and where you live.
You have the right to ask for a second opinion, and your GP or specialist can help arrange this. It’s okay to ask questions and take your time to make decisions.
You can choose between public and private healthcare. Talk to your GP about your preferences and whether you have private health insurance, so you’re referred to the right place.
At your appointment, bring notes and questions, and consider taking a friend or family member with you. Don’t be afraid to ask the doctor to explain anything you don’t understand. It’s important that you feel supported and informed every step of the way.
If you would like to talk to one of our nurses at Lymphoma Australia, you can call Monday-Friday 9am-4:30pm Eastern States Time, on 1800 953 081.
