Belgian Breast Meeting - October 3 – Pullman Brussels airport 1 Together against breast cancer Long Term Quality of Life The Three Ages of Women Gustav Klimt

Belgian Breast Meeting - October 3 – Pullman Brussels airport 2 Together against breast cancer Long Term Quality of Life

Belgian Breast Meeting - October 3 – Pullman Brussels airport 3 “Long Term Quality of Life” What is it? Many different definitions but some common points: – “Marked for Life” – Stress around Follow-ups – Fertility – Pregnancy – BRCA Transmission – Body sufferance and Body Shape & Image – Back to Active Life – Prevention of recurrences

Belgian Breast Meeting - October 3 – Pullman Brussels airport 4 Long Term Quality of Life “Marked for Life” It all starts before your treatments - Good contacts, trust and second advise proposal - Clear explanations questions allowed - Safeguard of your fertility, of your body - Empathy from the medical staff - no PITY - Good directions given by a human and complete team of professionals. You do not forget about cancer It may as well be the “less bad” memory possible.  It is only achievable if all the above conditions are present

Belgian Breast Meeting - October 3 – Pullman Brussels airport 5 Long Term Quality of Life “Marked for Life” You are not able to think - As a patient all you hear is the word “cancer” - Guidance through the “After Announcement - You need to understand what’s happening to you - All patients should have the same opportunities  A National check-list with questions Because understanding makes the trauma just a bit smaller. And make you feel part of the fight ever since the beginning.

Belgian Breast Meeting - October 3 – Pullman Brussels airport 6 Long Term Quality of Life Stress around Follow-ups – Constant reminder of cancer so you try to avoid them – Fear and anxiety of disease recurrence and fear of missing metastasis in not controlled areas – Waiting for results: they never come quickly enough – Over-control, possible risk of irradiation – Burden of going to hospital, endless queues, no quality contact with nurses as they have no time  Need to take time from work – Medical personnel is overloaded

Belgian Breast Meeting - October 3 – Pullman Brussels airport 7 Long Term Quality of Life Fertility – Pregnancy What are the options? – Fertility safeguard ??? – Important decisions to take at time of announcement of cancer – Complex information to absorb and understand

Belgian Breast Meeting - October 3 – Pullman Brussels airport 8 Long Term Quality of Life Ethics? – BRACA Transmission – Having a baby – A non-genetic carrier baby is it possible? – Frightening solutions – Where do we stand with ovarian Cryo-preservation? – In vitro – not that easy – Ovocyte donation ? – Psychological support to help decision and after decision – Adoption is inaccessible 

Belgian Breast Meeting - October 3 – Pullman Brussels airport 9 Long Term Quality of Life Body sufferance and body shape & image – Lymphoedema: can we help further – Prevent non-adequate physiotherapy. – Accepting the new body shape – Accepting the new “body behaviors”

Belgian Breast Meeting - October 3 – Pullman Brussels airport 10 Long Term Quality of Life Going back to Active life Social Exclusion – You are excluded from proper insurance packages – You cannot get a loan with decent conditions – You want to go back to work : In some cases incapacity, or loss of the job and financial resources – Perception that you are back in good shape and people soon forget what has happened but you feel more quickly tired than before At the same time wanting to go back to normal and forget about cancer but being reminded about it though frequent social exclusion

Belgian Breast Meeting - October 3 – Pullman Brussels airport 11 Long Term Quality of Life Prevention of Recurrence - Need to be active against cancer to have at least the feeling one is fighting – What can women do as prevention against relapse ? – Homeopathy, Acupuncture can be discussed – no Taboo – Does changing to a healthy life style help? – Getting information on what is healthy and what is not – Danger of bad information on the net and newspaper, you need a safe information source

Belgian Breast Meeting - October 3 – Pullman Brussels airport 12 Long Term Quality of life: what is IT that I need? My personal Management – Future actions – preventive surgeries? Healthy way of living? – What can I do? – Psychological support to be able to remain critical when facing important decisions – Crossings between hospitals if some have better suited solutions for a case than others – I Lobby amongst patients to participate to clinical trials See an End – Please tell us we are through, even if the next sentence is that we need to go on with controls: we need to hear the word “cured”

Belgian Breast Meeting - October 3 – Pullman Brussels airport 13 Long Term Quality of life: what is IT that I need? Minimum Stress around follow-ups, : – As precisely targeted as possible but with reassurance on areas not controlled such as brain – Quick results – No queues – Pleasant staff and environment helps Family – Fertility safeguard as a young patient it is really important – Help to get pregnant

Belgian Breast Meeting - October 3 – Pullman Brussels airport 14 Long Term Quality of life in summary Best cares for all Grow old in good health

Belgian Breast Meeting - October 3 – Pullman Brussels airport 15 THE USE OF COMPLEMENTARY AND ALTERNATIVE MEDICINE AMONGST BREAST CANCER PATIENTS. Dr. Guy VERHULST