Cancer Resources to help you navigate your cancer recovery

Cancer resources: I have collated for you to assist with your journey, the majority of these organisations specialise in helping people and their families with cancer to cope with all of the implications of having the disease. I will update these and add as I come across more. Please share with your network. I also share individualised resources for you at one-on-one sessions.

These cancer resources include patient support groups, checklists, cancer Apps, clinical trial sites, cancer research, cancer related books, cancer videos and cancer calendar.

We will endeavour to keep this up-to-date and will add to as new resources become available. Having all these things in one place is hopefully helpful to you.

Also good to know is that almost 7 in 10 Australians will survive for at least 5 years after a cancer diagnosis and in some cancers the survival is as high as 90% and it is steadily increasing with improvements in care and treatments . Or in other words 9 people out of 10 live on, which is good news in the cancer diagnosis landscape. This could be the case for you too!

Australian Charter of Health Care Rights

The Australian Charter of Healthcare Rights describes the rights of patients using the Australian health system. Rights are essential to make sure that, wherever and whenever care is provided, it is of high quality and is safe.

Australian Healthcare Rights Charter

Cancer Types

Look up basic information on cancer type

Prediction Tools

One third of cancers could be prevented take this 5 min test to check risk factors:

Check your cancer risk

Familial Risk Assessment – Breast and Ovarian Cancer (FRA-BOC)

Predict Breast Tool NHS

Breast Cancer Risk Assessment Tool – USA

Prostate Cancer Risk Assessment – USA

Helpful Books

Information and Support Pack – Cancer Council (for those in Australia)

Emotions and Cancer: A guide for people with cancer, their families and friends. Cancer Council (Call 13 11 20 for information and support)
Nutrition and Cancer: A guide for people with cancer, their families and friends. Cancer Council (Call 13 11 20 for information and support)
Understanding Complementary Therapies: A guide for people with cancer, their families and friends. Cancer Council (Call 13 11 20 for information and support)
Massage and Cancer: A guide for people with cancer, their families and friends. Cancer Council (Call 13 11 20 for information and support)
Exercise for People Living with Cancer: A guide for people with cancer, their families and friends. Cancer Council (Call 13 11 20 for information and support)

Support with Exercise

Ex-Med Cancer is a program run by qualified exercise physiologists that specialise in tailoring an excercise program from you while undergoing cancer treatment and thereafter. There approach uses best-practice to design your program. All the research shows that excercise will help you feel better during and after treatment – in fact it is thought to be the very best treatment to improve mood, energy and resilience when going through cancer!

Healthy Living after Cancer is a free telephonic coaching program available to adults who have completed their cancer treatment. A health coach helps you set goals for healthy eating and physical activity – and works with you over 12 phone calls in a six-month period to achieve them. Ring Cancer Council on 13 11 29 for more information.

Dragons Abreast Australia is a national organisation for breast cancer survivors of various ages, backgrounds, athletic abilities and interests. Members spread the message of breast cancer awareness while participating in the sport of dragon boat racing phone 1300 889 566.

YWCA Encore is a free 8-week exercise program designed specifically for women who have experienced mastectomy, lumpectomy or breast reconstruction surgery. It is based around floor and pool exercises and relaxation techniques and aims to be both fun and therapeutic. Benefits include improved mobility and fitness, toned upper body and reduced discomfort. Phone 1800 305 150 or 02 9285 6244 from your mobile.

Technology and apps to help you with cancer

CancerAid is the number one treatment app in Australia, UK and US. It was designed by doctors to help patients take control of their illness and connect your friends, family and health professionals to provide you with support.

CancerAid lets you:

To keep a log of your symptoms,
Organise your cancer information in one place, personalised to you,
Learn about treatments with medically reliable and peer-reviewed in-app content,
Store your medical records, results and specialist’s details in a single, secure location,
Track and manage, treatments and medications,
Document which medications have not been effective,
Record for personal journey using the text or video journal,
Access news and information about cancer research, fundraising and community events,
Connect with friends, family, patient advocate, caregivers or health professionals to share your experiences.

‘Cancer Fog’ can occur because of treatments such as chemo or due to periods of sustained high stress. BrainHQ is an app to improve cancer survivor’s memory.

5 Top Questions To Ask Your Doctor

Do I really need the test or procedure?
What are the risks?
Are there simpler/safer options?
What happens if I don’t do anything?
What are the costs?

Cancer Checklists

Research has shown that patients report, question prompt lists and audio recordings, assist in providing support to remember and understand medical information, Hyatt A., et al., 2018.

We have created a range of cancer checklist types that can be a handy way to manage this complex project.

PDF versions of these cancer checklist types are free for you to download and are print friendly, we hope these are useful to assist you with your tracking and planning for your ‘cancer project’.

The My Medication List and My Cancer Project Team details are handy to take with you to appointments, to jog your memory and to have a few copies for your support people and near the phone.

My Recovery Checklist

Download a print version of My Recovery Checklist

Be gentle with yourself (both emotionally & physically),
Take an active role in your care, no question is ever silly,
Get organised before appointments,
Know your decisions are the best you can make at this time,
Information is power,
More than one expert opinion can be useful,
Ask for & accept help,
Treat yourself,
Join a support group & talk to people who have been touch by cancer,
Ask unwell friends & family to reschedule visits to when they are better, and
Reduce stress anyway you can.

Do I have a current will?
Have I got a medical power of attorney?
Do I need Advance Care Directives?
Have I let my employer know of my diagnosis & associated treatments?
Have I submitted a claim to my superannuation and let them know of my diagnosis?
Have I let my accountant know of my diagnosis?
Have I let my financial planner know or my diagnosis?
Have I informed my bank know of my diagnosis?
Do I have copies of my health insurance policies handy?
Have I notified my total & permanent disability insurer know of my diagnosis?
Have I submitted a claim to my total and permanent disability insurer?
Have I let my income protection insurer know of my diagnosis?
Have I submitted a claim to my income protection insurer?
Have I let Centrelink Sickness and Disability Team know about my diagnosis? and
Have I submitted an application to Centrelink?

Download a print version of My Cancer Project Team

Rehab

Breast, Shoulder, Head and Neck resources Founded by Denise Stewart, an occupational therapist, who brings together information and resources for those recovering from head, shoulder and neck surgery.

Appearance-Related Side-Effects and other Cancer Complications

Real Fringe Hair Bands Real Fringe Hair Bands was founded by Nicole DeMatos (oncology nurse), because of a real desire to make a difference to the lives of those who suffer from hair loss due to cancer treatment or Alopecia Areata. They all wanted something that is comfortable, less hot and itchy than typical wigs, and something that looks natural. The result was our patented Confident Locks™ hairbands.

Look Good….Feel Better is a free community service that helps women managed the appearance-related side effects of chemotherapy and radiotherapy. It operates in all States and Territories of Australia.

Hathouse was started by a breast cancer survivor and has a large selection of hats and scarves you can buy online.

Cancer Hair Care is a UK-based website and charity with tips and information on caring for your hair when you have cancer.

Australian Lymphology Association (ALA) has useful information in the Education and Resources section. You can also search for a practitioner who has been trained by the ALA.

Emotional Support and Wellbeing

If you ever have feelings that you want to hurt yourself call 000 or Lifeline (phone 13 11 14).

Lifeline is a 24-hour crisis support and suicide prevention service, call 13 11 14, or call 000 if your life is in danger. Lifeline is a national charity providing all Australians experiencing a personal crisis with access to 24 hour crisis support and suicide prevention services. They are committed to empowering Australians to be suicide-safe through connection, compassion and hope.

BeyondBlue has specific information for people diagnosed with cancer. You can also ring 1300 224 636 to speak to a trained mental health professional.

The Otis Foundation provides free retreat accommodation at properties around Australia for women with breast cancer and their families (phone +61 3 5444 1184).

Mindfulness and relaxation

Monash University offers a free online course in mindfulness. It covers stress reduction, managing emotions, improving work and study performances, emotional health, communication, relationships and more.

Smiling Mind App is a free guided meditation app developed by psychologists. It aims to help you better cope with stress, pressure and general life challenges.

I have created a guided meditation for you if you haven’t had much practice of meditation. Guided Meditation – by Dr Rachel

Massage

You can find a massage therapist with training and experience working with people with cancer.

Family member impacted by cancer

Pink Hope provides information and support for family members who are at increased risk of breast and ovarian cancer. They have an online tool to help you determine your risk based on family history, and ‘Ask our genetic counsellor’ service where you can submit questions about your risk. They also offer telephone peer support by trained women who have increased risk breast/ovarian cancer.

Gift Ideas and Support for Someone with a Cancer Diagnosis

B.OK Box

Description of boxes and benefits to someone with a diagnosis:

A B.OK boxes is designed to support someone going through changes and challenges in life over a period of one or two months.

Each box is guided through helpful wellbeing pillars and advice from experts in the fields of positive change, meditation, gut health and more!

To help you put this into action each expert has included a gift inside each envelope to help the recipient practise and implement over their B.OK journey.

Each box includes healing, relaxing and helpful gifts as well as weekly envelopes to open focused on a different wellbeing topic from industry professionals.

Your B.OK Box will provide you lasting support that guides you through wellbeing practises that can help you through your diagnosis.

Click the link to the top of box you need to purchase:

One Month Guidance B.OK Box

Two month guidance B.OK Box

Customised B.OK Box

From here you can select gender, occasion and colour theme.

Patient Opinion Website

Patient Opinion believe that patients’ feedback –
good or bad – is essential to improving Australian health services.

Grief Support Group

Motherless Daughters Australia (founders Danielle Snelling and Eloise Hughes)

Podcasts

Cancer Council Podcasts

Cancer Clinical Guidelines

COSA Guidelines

Cancer Clinical Trials

Australian

The Australian Clinical Trials Website

Global

www.Clinical Trials.gov

Cancer Research Foundations

Brain Cancer

Dr Charlie Teo Foundation – Charlie was the surgeon who kept my cousin alive for 9 years after his original diagnosis of 3 months. Our family are forever grateful for this gift. We even have a family member, my cousin’s second son who would never have been born without Charlie’s amazing surgery, called ‘Charlie’ named after this great man.

Cure Brain Cancer Cure Brain Cancer is the leading organisation for brain cancer research, advocacy and awareness in Australia.

Breast Cancer

The National Breast Cancer Foundation (NBCF) funds all forms of research into the prevention and treatment of breast cancer.

Male Cancers

Movember Foundation A leading charity changing the face of men’s health.

The Prostate Cancer Foundation of Australia (PCFA) is the national body for prostate cancer in Australia. It funds research and other efforts to reduce the impact of prostate cancer on the community.

Children

Kids with Cancer Foundation Since 1998 we have funded research into better ways to treat children suffering now.

Other organs

Other Support Groups

Adult Children of Alcoholics and/or Dysfunctional Families

Alcoholics Anonymous Australia

Al-Anon Family Groups Australia

Co-Dependants Anonymous Australia

Narcotics Anonymous Australia

Political Advocacy

Australian Patients Association is an independent not-for-profit organisation dedicated to championing and protecting the rights and interests of all patients and improving overall patient care and health outcomes.

They believe that an effective patient support group representing the rights and interests of all patients can have a positive influence on the development of national healthcare policy.

Cancer Voices Australia is a national consumer advocacy organisation representing Australians affected by cancer. It aims to ensure the voices of people, their carers and families affected by cancer are heard at a national level. There are also Cancer Voices organisations in most states and territories.

Patient Support Groups

The majority of these patient support groups are alphabetical based on cancer type.

Australian Cancer Survivorship Centre has helpful resources as you adjust to life after cancer.

Beyond Five – Face of Head and Neck Cancer Beyond Five is dedicated to improving the quality of life of everyone affected by head and neck cancer through education and access to support.

Bowel Cancer Australia is dedicated to bowel cancer prevention, early diagnosis, research, quality treatment and care. They provide practical and emotional support for the growing number of Australians affected by bowel cancer.

Breast Cancer Network Australia (BCNA) is a national organisation for Australians personally affected by breast cancer. It works to ensure that Australians diagnosed with breast cancer and their families receive the best information, treatment, care and support possible. They have linkage to BreastScreen.

Journey kits found at the link below:

My Journey Kit

McGrath Foundation (Breast cancer)

Think Pink Network (Breast cancer)

The Cancer Council has offices in each state in Australia:

CanTeen an Australian Organisation for Young People Living with Cancer is the national support organisation for young people (aged 12-24) living with cancer. Founded by psychologist Dr Michael Carr-Gregg.

Leukaemia Foundation is the national organisation dedicated to the care and cure of people living with leukaemias, lymphomas, myeloma and other related blood disorders, and providing support for their families.

Lung Foundation Australia is the national consumer advocacy organisation, representing Australians affected by lung disease.

Ovarian Cancer Australia is a national not-for-profit organisation providing assisting women affected by ovarian cancer.

Rare Cancers Australia assists Australians affected by rare cancers with support.

Red Kite charity assisting children and young people with cancer.

Carers of those with Cancer

Carer Gateway provides support for carers.

Carers Australia provides support for carers.

Videos

BARBECURE – Introduction

Cancer Calendar 2020


Date	Event
Jun 2020	Bowel Cancer Awareness Month
July 2020	Sarcoma Cancer Awareness Month
Oct 2020	Breast Cancer Awareness Month
22-24 Oct 2020	2020 International Patient Advocacy Conference (ICOPA)– Chicago – Dr Rachel invited to represent Australia. (Pending COVID restrictions on travel)
Nov 2020	Lung Cancer Awareness Month
11-13 Nov 2020	Clinical Oncology Society of Australia – Annual Scientific Meeting – Brisbane Convention Centre
18-19 Mar 2021	Dr Rachel attending with Naveena Nekkalapudi (Patient Advisory Board Member)

References

Hyatt A., et al., Culturally and linguistically diverse oncology patients’ perspectives of consultation audio recordings and question prompt lists. Psychooncology, 2018: 27(9).