Myelodysplastic syndromeYour guide to best cancer care

It can be overwhelming after being told that you have or may have myelodysplastic syndrome (MDS). A lot can happen quickly, and you might have lots of questions, like 'What happens next after a diagnosis?'

This support resource can help to guide you, your family, and your friends through this experience.

Information and support

If you need additional information or would like support, you can visit the leukaemia page or call Cancer Council on 13 11 20 to talk to an experienced healthcare professional.

To speak with an experienced healthcare professional who can provide you with disease-specific information, answer your questions, talk through your concerns, and connect you to blood cancer support groups, call 1800 620 420 or visit the Leukaemia Foundation homepage. The team can also help with practical concerns such as accommodation close to treatment, transport to appointments, and financial assistance.

For more information about MDS, visit the MDS page from Leukaemia Foundation.

More information is also available in the ‘Resources’ section of the optimal care pathway for MDS.

If you need a translator, call TIS on 13 14 50 or visit the TIS National website.

Symptoms

Your general practitioner (GP) or other primary care physician will do a check-up to see if they can find out what is making you unwell. They will ask about any symptoms you might be having such as persistent tiredness and fatigue, weakness, shortness of breath with minimal exercise, easy bruising, a rash of small red dots, mouth ulcers, and recurring infections, especially chest infections.

Initial tests you may have:

Referrals

If your GP thinks you may have MDS, you will be referred to a haematologist or medical oncologist (specialist) at a public hospital or in private practice for more tests. Haematologists are doctors highly trained in conditions that affect blood and bone marrow.

You can bring a family member or friend with you to your appointments.

Timeframes

The timing of your specialist appointment will depend on the initial results of tests performed by your GP. For most people an appointment within four weeks is appropriate. If you require urgent referral, your appointment should happen within two weeks.

If you can’t get an appointment within this timeframe, follow up with your GP.

Travel to access tests, treatment and care

You may have to travel to see a specialist, undergo tests or access treatment, especially if you live in a rural or regional area. In some cases, you may have to leave home for an extended period. Accommodation and transportation support services are available, and it is encouraged to have family support with you whilst you undergo treatment.

See further information on Leukaemia Foundation’s accommodation and transport support by visiting their accommodation services page and transport services page.

Mental health and emotional well-being

A blood cancer diagnosis can affect your mental and emotional well-being. Many people being treated for a blood cancer experience a range of feelings and it is not uncommon to feel low, depressed, or anxious. Patient support organisations such as the Leukaemia Foundation or Cancer Council, your GP, or another health professional such as a psychologist or social worker can help you develop strategies to cope. They can help you access a mental health treatment plan if required.

Helpful tips

Let your doctor know what is most important to you in a specialist (e.g., that they specialise in MDS, cost, location, bedside manner, expertise).

Ask your GP to recommend trusted sources of information and support — you can share these with your family and friends too.

Talk to your GP/specialist about how to manage any other health conditions you may have during your blood cancer treatment and let them know if you have any concerns.

It’s a good idea to keep a written diary or digital record of treatment details and appointments with the GP and specialists. You can ask permission to record appointments. It’s also helpful to bring a list of questions and ask for a written treatment plan. This can be an important source of information for later in life.

Don’t ignore new signs and symptoms. Alert the GP or specialist. Trust yourself. It’s OKAY to be persistent.

Your haematologist/specialist will do more tests to see if you have MDS, to check how advanced it is and to help determine the best treatment for you.

An MDS diagnosis is confirmed by a bone marrow biopsy. A small sample of bone marrow is taken from the back of your hip/pelvic bone under local anaesthetic and, in some cases, under light sedation. The samples are sent to a laboratory for examination to see if there is any blood cancer detectable and in some instances for further specialised testing.

Timeframes

You should generally have results back within two weeks. Other specialised tests may take longer.

Your specialist will talk to you about your treatment options for MDS. You may need more than one treatment type to get the best results, and you may require ongoing treatment to manage your CML for the rest of your life.

You might have one treatment or a mix of treatments:

Supportive therapies. Required by all people with MDS, these therapies help keep your organs functioning properly and may include things like transfusions of red blood cells and platelets and treatments to help prevent infections.

Chemotherapy. Drugs are used to kill cancer cells and stop the cancer growing.

Targeted therapy. This uses drugs to attack specific features of cancer cells and stop the cancer growing.

Immunotherapy. This is a type of cancer treatment that helps the body’s immune system fight the cancer.

Allogeneic bone marrow transplant. This replaces the blood-forming cells that have been destroyed during intensive chemotherapy or radiotherapy. Stem cells are collected from the blood of a suitable donor. These stem cells are cells that help the body grow new healthy blood cells. When your chemotherapy is finished, the stem cells that were collected are injected into your bloodstream through a drip into a vein. This is only used in rare cases and will not be the first treatment used.

For more information, visit Cancer Treatment. Supportive care (treatment or services that support you through a cancer experience) are also available, often delivered through a multidisciplinary team that may include nurses, pharmacists, psychologists, physiotherapists and dietitians.

Timeframes

By evaluating your symptoms and test results, your specialist will determine when treatment should start. Treatment for MDS will generally start within six weeks. If you’re a candidate for a stem cell transplant you should be referred to a bone marrow transplant specialist as soon as possible.

You can ask your GP for a referral to another specialist for a second opinion.

For more information on clinical trials, visit the Australian Cancer Trials page or search the Australian New Zealand Clinical Trials Register. Participation in a clinical trial is voluntary, and you can choose not to participate in a clinical trial or withdraw from a clinical trial at any point if you wish.

For relationship support and, if necessary, referral to counselling services, visit the relationships and sex page on Leukaemia Austalia. Canteen Australia also provides some helpful information on fertility options after a cancer diagnosis.

You can ask for more time to think about your treatment options, and you can ask your GP for a referral to another specialist for a second opinion.

Treatments for MDS are generally not curative so you will need ongoing support, treatment and specialist care.

Transitioning to shared care models of treatment and a survivorship care plan

In some cases, you may need ongoing hospital-based care. In other cases, a shared follow-up care arrangement with your GP may be appropriate. Your specialist and healthcare team will work with you to make a plan for you and your GP. This plan will explain:

• who your main contact person is after treatment
• how often you should have check-ups and what tests this will include
• understanding and dealing with potential side effects of treatment
• how to get help quickly if you have an urgent problem
• how to look after your overall health and wellbeing
• what healthcare and community support services are available to you and how to access them

For more information, visit After Cancer Treatment.

MDS is often incurable and will come back (relapsed disease) or may develop into another cancer (progressive disease).

Treatment will depend on the extent of how far the cancer has progressed, how fast-growing it might be, the symptoms you are experiencing and what your preferences are.

Options may include one or more of:

• participating in a clinical trial where you may try a new treatment
• treatment for MDS that has developed into acute myeloid leukaemia

Advance care planning

Your GP or healthcare team may talk with you, your family, and carer about future treatment and medical needs. It is important to have this conversation so that you can make your wishes and decisions about your treatment and care known to your doctors and family.

Advance care directive

Sometimes known as a living will, an advance care directive is a legally binding document that you prepare to let your family and healthcare team know about the treatment and care you might want or not want in case you become too unwell to make those decisions yourself.

For more information, visit Advance Care Planning Australia.

Palliative care

Palliative care can help you to live as well as you can including managing pain and symptoms, psychosocial support, and assistance in identifying care goals. This care may be at home, in a hospital, or at another location you choose. Your specialist may refer you to palliative care services, but this doesn’t always mean end-of-life care. Today, people can be referred to these services much earlier if they’re living with blood cancer or if their blood cancer returns.

Speak to your GP or specialist or visit Palliative Care Australia.

Making treatment decisions

You may decide not to have treatment at all, or to only have some treatment to reduce pain and discomfort. You may want to discuss your decision with your healthcare team, GP, family and carer.

For more information, visit Advanced Cancer Treatment.

You may have to pay for some appointments, tests, medications, accommodation, travel or parking. Speak with your GP, specialist or private health insurer (if you have one) to understand what is covered and what your out-of-pocket costs may be.

If you have concerns about costs, talk to your healthcare team or a social worker about:

• being bulk-billed or being treated in the public system
• help with accommodation during treatment
• the possible financial impact of your treatment

You can call Cancer Council on 13 11 20 to speak to a healthcare professional about financial support. For more information about costs, visit Practical and financial assistance and What will I have to pay for treatment.