While mammograms have become routine aspects of life, rarely is anyone ready for an upsetting result. In 2012, when Simone Lovett, 56, went in for what she thought to be another routine assessment, she was left unsure when the results came back as to reveal a benignnot cancerous, can grow but will not spread to other body parts cyst in her left breast.
While not believed to be cancerous, Simone continued to ensure it was checked with each subsequent visit, each time it came back as benign. Simone even went as far as dubbing the lump, ‘Arnie’.
In 2019 however, Arnie was continuing to develop, growing from 1.3cm to 7cm, and was beginning to cause discomfort. With the cyst continuing to appear as benign with each test, Simone opted to have a lumpectomya surgical procedure where the tumour and a small amount of surrounding breast tissue are removed, also known as breast conserving surgery, officially recognising Arnie as a Fibroadenoma. The following week, however, Arnie would undergo a name change, after a pathologythe study of disease test indicated that a malignantcancerous, may grow and spread to other areas of the body tumoura tissue mass that forms from groups of unhealthy cells lurked just out of reach of the biopsyremoval of a section of tissue to analyse for cancer cells tests. It’s proper name, is Cystosarcoma Phyllodes Tumour, and it accounts for approximately 0.1 of breast cancers, of which only 25% are malignant.
These Phyllodes Tumours are very aggressive and fast-growing, they are also resistant to some standard forms of treatment including chemotherapya cancer treatment that uses drugs to kill or slow the growth of cancer cells, while minimising damage to healthy cells and radiotherapy. With few options left, Simone had her whole left breast removed in a Mastectomycomplete or partial removal of one or both breasts in September of 2019. As many people living with a rare or less common cancera disease where abnormal cells split without control and spread to other nearby body tissue and/or organs already know, this is not where the challenges ended.
“I have found very little information at all. Most doctors have never heard of it. The internet has very little information and if you can find anything, it’s aimed at other doctors. Nothing is in layman’s language.”
Simone struggled to find out more about her cancer, leaving her disheartened and afraid. While there may be some medical experts out there with information, Simone said that she feels ignored, as the information is only given in the form of medical jargon and difficult to understand language; a common barrier for those entering the cancer space for the first time, especially in the rare and less common cancer community.
Since then, Simone has had to do a lot of the mental heavy lifting herself, using the internet and RCA resources to learn about possible treatment pathways for her aggressive form of cancer. Sadly, Simone has said that even though she has brought it up many times, she has still received no prognosisto predict how a disease/condition may progress and what the outcome might be, no recurrenceto occur or happen again rate, or alternative treatment pathways. In her eyes, doctors and medical staff deal with things like this daily, but it is not recognised that to her and her family, this is all scary and new.
Another trouble that has arisen, is the loneliness that all too often accompanies a cancer diagnosisthe process of identifying a disease based on signs and symptoms, patient history and medical test results.
“I have relied on family as all my friends bailed out as soon as I mentioned the ‘C’ word. Not a single visitor since September 2019.”
As many readers will be aware, a strong support network can make all the difference in the world. In the same way, a challenging or absent network can have a similarly adverse effecta negative side effect or reaction to treatment. With zero mental health support however, Simone has had to work exceedingly hard alongside her family to continue moving forward and adapt to the cancer experience that has become her daily life.
Residing in Jimboomba, a near 50kms outside of Brisbane, this drag-racing enthusiast is still determined to power onwards, calling upon the medical industry to offer up clear and concise explanations that are easy to understand, and to be met with compassion and empathy. Or to be as concise as Simone herself, “Answer our questions.”
Note: Stories such as Simone’s only highlight the importance of following your gut when something doesn’t seem right, rare cancers are often very difficult to diagnose.
For more information on Phyllodes Tumours of the Breast, Click here or Here.