Melanoma Focus supports patients along with their loved ones, we understand that when diagnosed with melanoma many people feel overwhelmed and family members become advocates for them. Jane Henderson’s daughter, Esther was diagnosed with secondary melanoma in 2005, with the consent of Esther, Jane has kindly shared her story with us.
We recognise that Esther’s story is complex, with various treatments given over a long period. The management of melanoma has drastically changed over the past ten years with the availability of effective treatments given as standard of care.
“Our lives changed forever that day when we were taken to what we call ‘the bad newsroom”.
I’m Jane. My daughter Esther was diagnosed with metastatic melanoma on 5 December 2005 with confirmation of a biopsy of a lump in front of her left ear. Our lives changed forever that day when we were taken into what we call ‘the bad newsroom’. In 1996, a mole removed from her temple at 15 years of age had been misdiagnosed as benign, so the lump was not ‘red flagged’. On 20 December 2005, 42 lymph nodes were removed in an extensive neck dissection. 3 were malignant. Three years later – after giving birth to Heidi (now 13) – Esther was found to be stage 4 as her melanoma had spread to other parts of her body. Esther has been living with metastatic melanoma and over the years has had 18 surgeries, some quite complex.
During Esther’s time as a patient, we have had to navigate the healthcare system – and without a roadmap! Finding the expert surgeons, we have needed has been difficult, there is no merit list anywhere. Our oncologists have been extremely open and helpful when seeking second opinions. Every patient is entitled to a second (or third….) opinion and doctors have been supportive of this. We have found that your local cancer hospital will offer you everything they have, but they do not have everything. The specific treatments for your specific melanoma may not be available at your local hospital and this is where Melanoma Focus can help, with their Melanoma TrialFinder. It is essential to network, find others who have had good surgery and talk to them about their experience. The Melanoma Patient Conference is the perfect setting to do this.
“Every patient is entitled to a second (or third….) opinion and doctors have been supportive of this.”
18 months ago, Esther had SABR to her pancreas and in December 2021, 2 palpable tumours were removed together with half of her left bicep. She also had a full axillary clearance removing 24 lymph nodes. 6 contained melanoma. This surgery was with a view to receiving dabrafenib/trametinib and possibly in the future ipilimumab/nivolumab.
Unfortunately, pre-treatment scans in February 2022 revealed further spread – tumours in the upper axilla and a large tumour resting on her carotid artery. The surgery in April of 2022 involved a thoracic surgeon and an ENT surgeon operating together – as each site required their specific skillset. The good news is all the tumours were removed. The bad news is Esther’s vagus nerve was severed, leaving Esther with vocal cord palsy and cardiovascular issues.
In May 2022, she finally got to start dabrafenib/trametinib. All scans whilst on treatment have been positive.
Esther has had melanoma since 1996 and has been stage 4 since 2009. One of Esther’s great pastimes has always been singing and she is a founding member of the Sheffield Cancer Choir, raising money for our local cancer hospital, Weston Park. For 2023, the choir ladies bared all for a tasteful naked calendar. This was a great confidence boost for Esther. Due to the vocal cord palsy, Esther’s voice has been greatly affected and whilst her singing voice and airway have been severely compromised, she is still an active member of the choir.
No mother wants to see her child fight for survival. Apart from the support of my family and friends, the way I have coped is by keeping abreast of the latest treatments and trials. When Esther was diagnosed there were no effective treatments at all. It has been encouraging that in recent years there have been advances in melanoma treatments and we now have a number of options. One coping strategy has been to get involved with melanoma charities, primarily as an advocate for Melanoma Focus and Skcin. The CEOs of these two charities have been a huge source of personal support for which I owe them a huge thank you.
“Learn about the treatment options available and how to access them.”
If we were to offer advice to other melanoma patients- it would be the importance of self-education. Learn about the treatment options available and how to access them. Melanoma Focus understands that each patient has differing abilities, and this is why Melanoma Focus is truly invaluable providing patients – as well as professionals – with information. The Melanoma Trial Finder explains what trials are and you can search for potential UK trial options to discuss with your doctor.
The Melanoma Helpline provided by the charity is free. Highly skilled, handpicked Skin Cancer Nurses are employed helping patients understand treatment options such as surgery, radiotherapy, and immunotherapy. It is exhausting navigating our own treatment pathway. Melanoma Focus do realise that patients face their own mortality every day. They are there to guide and support us. We are very thankful for them.