This page covers:
- Australian Guide to best cancer care for MPNs
- Preparation for haematology appointments
- Patient information tool (infographic)
This is a tool for patients who wish to set out their medical history and blood tests to take to their first haematologist appointment. It’s intended for use by patients who are very engaged with their own health and medical records and especially those with more than one health condition.
1. The Australian Guide to best cancer care for MPNs
The Guide to best cancer care for MPNs was released in 2024 and is a useful patient resource. It forms part of the Australian Optimal Care Pathways for myeloproliferative neoplasms. It includes some sets of questions you may wish to ask your haematologist at diagnosis and during your ongoing care.
It is available in other languages HERE.
2. Preparation for your first haematology appointment
MPN patients have also developed some guidance on how to prepare for your first haematology appointment.
It includes questions which may help you make the most of your haematology appointments, particularly your early ones.
Prepare for your first haematology appointment – available to print HERE
- Bring a list of all your health conditions and the year of diagnosis, including current medications and doses.
- For patients very engaged with their health and medical records, you may wish to consider preparing an infographic – see later on this page.
- Bring contact details of other doctors currently involved in your care.
- Bring a list of questions you wish to ask the doctor, written in order of priority in case you do not have time to ask them all at the appointment.
- Take other medical reports about general health issues.
- Establish a timeline of when you started to feel symptoms – see the symptoms assessment form.
- Take a support person if possible, and ask them to take notes of the consultation for your future reference. It is very easy to forget details otherwise.
- Let the doctor know if you are pregnant, breastfeeding, or planning to become a parent in the foreseeable future (this applies to men and women). Your treatment plan will need to take this into account.
- Be prepared for a physical exam including palpation of your abdomen, and questions about your general health history.
- Don’t be afraid to ask questions, and ask for clarification if you don’t understand something. At the end of your appointment, don’t be afraid to ask the doctor to sum up the main things you need to take away from the appointment.
Questions to ask your doctor
- What is my diagnosis?
- What are my treatment options?
- If I am to be on “Watch and Wait”, what will trigger a change to active treatment?
- Why would I wait to start treatment?
- Will I need a Bone Marrow Biopsy? What pain relief will be provided?
- Do I have one of the 3 major MPN gene mutations – JAK2+, CALR, MPL?
- What is my risk of thrombosis, and how will you mitigate that risk?
- How often will I need to have blood tests?
- How often will I see you in the future?
- Will I have access to my blood test and other test results?
- Is there anything I can do to help manage my condition?
- Are there any symptoms I should watch out for that would require immediate attention?
What can you expect
- Be prepared for a physical exam including palpation of your abdomen, and questions about your general health history, and your family history of disease.
- Your haematologist will require a complete medical history and perform a physical examination.
- Blood tests including complete blood counts and biochemistry, molecular testing (JAK2), and possibly CALR, and MPL.
- You will usually be required to undergo a bone marrow biopsy either as part of diagnosis or later in your treatment.
Second opinion
You are always entitled to seek a second opinion on your diagnosis and/or treatment. If you feel comfortable to do so, you can ask your haematologist for a referral for a second opinion. Alternatively you can discuss with your GP, and request a referral to another haematologist. If possible and practicable, it is desirable to see a haematologist who treats many MPN patients, or see someone in a major hospital centre.
Conclusions
- Get involved in your care.
- Partner with your physician.
- Read quality MPN information, watch MPN videos, and ask questions about your MPN.
- Educate your other medical practitioners, dentists, carers etc about your rare condition.
- Don’t be afraid to seek a second opinion if you have concerns.
- Participate in clinical trials if appropriate.
- Control what you can, ie your diet and lifestyle choices.
If you would like to print this document, click HERE.
Prepare for your ONGOING haematology appointments
Again, prepared by patients, this document is about ongoing haematology appointments and so has a slightly different focus. It is available as a PDF suitable for printing HERE.
3. Patient information tool – infographic to inform your first haematology appointment
This infographic is a very specialised tool for patients with more complex medical needs. It has been prepared for use by patients who are very engaged with their health and medical records. It’s been designed by an Australian MPN patient from Perth.
While it aims to provide background for an initial haematologist appointment, it can also be used for informing future consultations and to facilitate discussion.
In the example provided, it summarised 10 years of medical history, with key health events and the blood tests that had been consistently abnormal i.e. clotting history and low blood counts. At the appointment, the infographic helped to quickly demonstrate trends, patterns, and possible relationships between health events and test results. By “talking to the infographic” it enabled the patient to focus on key information and ultimately explore those issues of concern with the haematologist.
The infographic can be downloaded below
