Stopping Renae's melanoma in its tracks
11 September 2017
Melanoma entered my life on the last day of summer 2013. I had just returned to school a few weeks previously after the summer break. As a History teacher, I divide time into timelines. On that last day of summer 2013, at the age of 49 my own personal timeline became divided into B.C. and A.D: Before Cancer and After Diagnosis. I had embarked upon a new era, the cancer journey. I was now entering the unchartered territory of After Diagnosis. Life Before Cancer was forever in the past.
During the summer holidays I was constantly exhausted: A bone wearying tiredness overwhelmed me that would not abate, despite being on the annual school summer holiday.
Towards the end of January I noticed a raised lump in my groin. My GP referred me to imaging for an ultrasound and a biopsy. The radiographer dismissed the claims of the GP, refused to do the biopsy and declared it was most likely an infected hair follicle that would respond to a course of antibiotics. The GP followed the suggestion and requested that I see him in a fortnight’s time.
I presented myself to the GP only to have him declare that he believed the lump to be bigger. A second round of tests were conducted and I was to see him on Thursday 28th February 2013 for the results. I was calm but in shock when he said “The results were not good. The lump was malignant and because it was in the node(s) of the groin, it was beyond stage 1 or 2 cancer." However, I was none the wiser as to what form of cancer was in my body.
I went straight to my parents' home because my 14-year old daughter was there waiting for me after the doctor’s appointment. Telling my family the result of the biopsy was beyond description. It was exacerbated by the fact that information was piecemeal at this time. I did not have the whole picture. Again and again and again I have heard countless cancer patients recall the most difficult aspect of diagnosis is the lack of information and the waiting game that repeats itself between the never ending round of medical appointments. Life becomes surreal at this point in time. The cancer patient is propelled into a new occupation, waiting.
On March 5th, 2013 after further tests, my GP confirmed that the cancer was indeed melanoma. The search was on to determine the primary. He believed it was a mole on my back near my left hip. He then booked me into an appointment with Melanoma Institute Australia’s Dr Robyn Saw. Dr Saw has the most compassionate bedside manner. She explained what the inguinal node dissection would involve and performed an excision of the primary there and then. A dear friend later exclaimed "I’m glad to see that mole gone. It looked like a funnel web spider had latched onto you and would not let go!”. Dr Saw also said it did not look like a typical melanoma.
I underwent surgery on Thursday March 28th. Dr Saw explained that 10 lymph nodes were removed. Being someone who has a thirst for information in order to plan the next step, I asked Dr Saw if in all likelihood, would I have a pulse in 5 years, 2 years or 6 months? It was very sobering to hear “I don’t know”. This is the reality of melanoma. It is like a tornado, sweeping in people, tossing them about, hurling them down with relentless force and then it moves on to the next town to claim more victims. In true tornado style melanoma is unpredictable and indiscriminate. There is no way of knowing which home will be targeted and which home will remain standing. This is the course of melanoma, unpredictable, indiscriminate, relentless, savage.
I left hospital the following week and began a month’s recuperation at home connected to a drain. The wound site became infected twice necessitating two admissions to RPAH as an inpatient.
After the drainage tube was removed and the wound had healed, the next hurdle awaited. What adjuvant treatment would be the best option? When it was revealed that the melanoma contained the BRAF gene and as a Stage IIIB patient I qualified for participation in the Combi-AD, my friend who works in clinical trials strongly suggested I take part after he read about the trial.
Well the rest is history! I was now a participant in the Combi-AD Trial. It involved taking medication for the first 12 months and being monitored closely for 5 years. The rounds of regular CT, MRI scans, skin checks, blood tests, echo, eye tests etc began. I began taking the combination of dabrafenib and trametinib or placebo at the end of May 2013, twice a day for 11 months. I did have some side effects which were mild. The fevers and chills, headaches, muscle spasms, sore feet upon waking, weight gain, eye sensitivity to light and extreme tiredness were all worth it! I have a sneaking suspicion I received the ‘real deal’ as my white blood cells dropped at one stage and this was later found to be a possible side effect.
Why was it worth it? I am alive today, enjoying life! I firmly believe the Combi-AD clinical trial and the care I have received from countless medical, nursing and administrative staff at Melanoma Institute Australia have kept me alive.
After surgery, prior to targeted therapy treatment, I was told the statistics for 5 year survival rates for Stage IIIB patients were 54%. I am here four and a half years later and still going strong!
I am a very lucky person and for that I am extremely grateful. There have been difficult times in the past and I do not know what the future may bring. When I was first diagnosed and in the whirlwind of early treatment, the 'not knowing' if I would survive melanoma was excruciating. Seeing the hardship and suffering reflected in the eyes of my daughter, parents, siblings, other family members and close friends has been incredibly difficult. I am forever grateful to my family and friends for their unceasing love and support.
The Combi-AD Trial has allowed me to continue to weave the fabric of my life. My history was extended beyond the summer of 2013. The fates have not yet cut the thread of my existence. The cloth of my life is still being woven. Life goes on.
As a result, I celebrated, really celebrated turning 50. I celebrate each birthday since. Becoming a little old lady is my ultimate life goal. I don’t have a bucket list. Living each day until I am a little old lady is a goal in itself. I have also lived to see my beautiful daughter Laura celebrate her 15th, 16th, 17th and 18th birthdays. I have lived to see her graduate from high school. I am grateful to have lived to experience travelling with Laura to Grafton to see her 2016 HSC Visual Arts major work being exhibited in the Grafton Art Gallery. Her sculpture was chosen as an exhibit in the annual ARTEXPRESS exhibition. I am a very proud mother. To be alive to see her become a beautiful young woman about to embark upon her own unique destiny is indeed a gift.
Thank you Melanoma Institute Australia for giving me the gift of life, the gift of living with purpose. I hope this trial allows countless other patients to also experience the gift of a rich and fulfilling life after melanoma.