Horsham resident launches a campaign to get a specific treatment for lobular breast cancer

Former airline pilot Dr. Susan Michaelis noticed a very small red mark on her left breast in 2013. It had a very slight amount of thickening but there was no lump. She raised it with her doctor who said it wasn't anything to be concerned about. The mark did not go away, so Susan asked for it to be investigated further. A mammogram and ultra sound detected nothing of concern but Susan remained concerned. As the mark did not go away a biospy was eventually carried out which confirmed she had Invasive Lobular Breast Cancer (ILC). An MRI scan estimated its size at 2.5cm.

Susan elected immediately to have a double mastectomy and reconstruction. The pathology report came back, she had 7cm of ILC yet a mammogram and ultra sound had seen nothing. Her consultant told her that was one of the trade marks of ILC, it was very hard to detect with mammograms, especially with denser breasts.

In 2021, after two other recurrences since 2013, Susan's cancer was detected in her spine. The treatments she had been on since 2013 had not been able to stop it coming back or spreading elsewhere in the body.

Multi award winning Fact Not Fiction Films who have a history of making public information films decided to make a short film called 'Eve Groves' to help educate people globally about lobular breast cancer. Andrae Morricone, son of legendary composer Ennio Morricone agreed to write the opening music of the film. Leonardslee Lakes and Gardens in Horsham provided the spectatular setting for the film opening. In the making of 'Eve Groves' short film it became very clear to Susan that a documentray was also needed to get more into the detail of the disease and Fact Not Fiction Films agreed to also make this. The hour long documentary is entitled 'My Journey With Lobular'.

Susan realised that what she and every woman diagnosed with ILC needed, was a specific treatment. She approached the Institute of Cancer Research, London (ICR) in early 2023 and asked them if a specific treatment for ILC was technically possible. Professor Chris Lord said with a 'Moon Shot' style approach, the biology of the disease could be fully understood which could then open the door to a specific treatment. The cost UK£20 million.

3.75 million people will be diagnosed with this cancer in the next 10 years, that is over 1000 people a day being diagnosed with ILC. Susan believes those 3.75 million people and the millions of loved ones, relatives, work colleagues and others affected all deserve a specific treatment for ILC. To achieve this she will be officially launch the 'Lobular Moon Shot Project' lobularmoonshot.org on Thursday 25th May 2023 at the Capitol Theatre, Horsham. The evening will also see the premieres of the films 'Eve Groves' and 'My Journey With Lobular'.

Companies like Leonardslee Lakes and Gardens have already agreed to help the project and on the 23rd May 2023 at the RHS Chelsea Flower Show, a new rose will be launched by Harkness Roses named the 'Dr. Susan Michaelis' rose. £2.50 from every rose sold will go directly to the research at ICR into ILC. Susan is now looking for others to help and to educate everyone about ILC, a cancer many call the forgotten cancer.

If you would like to attend the official launch of this important community led project, please email [email protected] as its by invitatoin only.

Susan Michaelis said: "We must think of ILC as 'Invest in Lobular Cancer'. So many more people will get the disease in the future, know a person with the disease or love or work with someone that has or will be diagnosed with ILC. To get people better outcomes we need specific treatments and that will only come from specific research into lobular. Please help me raise the money needed and educate others. Look for us on social media and get involved."

Susan became the first Australian to be awarded a British Citizen Award in January 2023 for her work to enhance aviation safety.