Sue’s Story

In December 2013, district nurse Sue discovered a new mole on her left thigh, which she suspected was a melanoma but initially delayed visiting a GP as it was Christmas time. After a few weeks she arranged an appointment and was immediately referred to dermatology where a diagnosis of melanoma was confirmed. She then had a wide local excision (WLE) and Sentinel Lymph Node Biopsy (SLNB) which revealed the melanoma had spread to her lymph nodes and her melanoma stage was 3B.  During November 2019 on examining her axillary lymph nodes she found an enlarged lymph node in her right auxiliary. Scans revealed two tumours in her abdomen and auxiliary.  In February 2020 she started immunotherapy treatment (ipi/nivo) and managed all 4 rounds and 2 years of nivolumab with minimal side effects. The first scan showed her tumours were shrinking and in July 2021 the scan was showing NED. All scans since have shown NED. Here she very kindly shares her story:

 “I delayed going to the GPs for a few weeks as it was Christmas then we were going on holiday.”

In December 2013, when I was 45, I discovered a new mole on my left thigh, on looking at it I knew it was a melanoma but delayed going to the GPs for a few weeks as it was Christmas then we were going on holiday.

I showed a work colleague who also thought it was melanoma and urged me to see my GP.  My GP listened to what I was saying on the phone and arranged an appointment later that day. She immediately referred me to dermatology under the 2 weeks wait. The dermatologist suspected it was a melanoma and arranged for me to have a biopsy. 2 weeks after the biopsy I was back at the hospital, with my husband, for my results. We were seen by the Macmillan nurse who confirmed that my mole had been melanoma but as it was so small it would have unlikely spread. She gave me the choice of having a WLE in my local hospital or to be referred to Oxford, which was an hour’s drive away for a WLE and SLNB. I choose to go to Oxford as being a district nurse I had heard too many stories where people had been given the wrong information or misdiagnosed.

“As an adult I had always been careful in the sun, wearing sunscreen, sitting in the shade and covering up.”

I was also told I was Braf+ which didn’t mean anything to me at the time I was in a state of shock and disbelief that I had melanoma, as an adult I had always been careful in the sun, wearing sunscreen, sitting in the shade and covering up. In my role as a nurse, I had also cared for patients trialling chemotherapy for melanoma, and the side effects were difficult to deal with. I also worried for my children who were only 8 and 10 and how my husband would cope.

“I was shocked to find that melanoma had been detected in my lymph node making me stage 3B.”

The WLE and SNLB were performed in late April 2014 and I went back to Oxford expecting to be told that I was all clear of melanoma, as at least two professionals had informed me that I was no or low risk for spread. I was shocked to find that melanoma had been detected in my lymph node making me stage 3B and that I was advised to have a groin dissection. I was operated on the 12^th June 2014 and stayed in hospital for 2 nights. I had agreed to participate in a trial of the use of vac pumps to drain the lymph fluid and went home with the pump, luckily, I was familiar with the use of them.

“I also developed lymphoedema and was referred to the lymphoedema clinic where I was prescribed a compression stocking to wear.”

I recovered in time for the summer holidays so I could spend time with my children. I was offered a further trial but decided not to participate as I would have to travel to Oxford at least once a month and wanted to spend time with my children. I was then followed up for 5 years. I only had one CT scan in those years as I was again advised that the radiation would do me more harm and that I was low risk for reoccurrence, I also developed lymphoedema and was referred to the lymphoedema clinic where I was prescribed a compression stocking to wear. In those 5 years I continued to work as a district nurse eventually going back to visit patients receiving palliative and end of life care and carrying on with my life. July 2019 I was discharged from both hospitals and continued to do monthly skin and lymph node checks.

“On examining my auxillary lymph nodes I found an enlarged lymph node in my right auxilia.”

In November 2019, one of my work friends told me she had just been diagnosed with breast cancer. I don’t know why but after her telling me this I felt that I needed to check myself again despite having just carried out my monthly checks a few days before. On examining my auxillary lymph nodes I found an enlarged lymph node in my right auxiliary. I immediately phoned my GP who saw me on the same day and referred me to the breast clinic on the 2 week wait.

When I was at the clinic, I underwent a mammogram and an ultrasound and biopsy. One look at the sonographer’s face and I could see that she knew it was cancer. I was then referred for a CT scan which I had to chase up as the consultant had ticked the non-urgent box. I had the CT scan and had to wait for several weeks for the results as the clinic days fell on Christmas day and New Year’s day.

I attended the clinic with my husband to be told the CT had shown a mass in my abdomen and another in my auxiliary, I was then referred for a PET scan which was arranged quickly, and the results were available within a week which confirmed the 2 tumours. I had an appointment with an oncologist 3 days later to discuss my scan results and treatment options. The abdominal mass was so close to my aorta that it was inoperable, so it was suggested that I started immunotherapy treatment. Several different options were discussed but after doing some research and looking at patient outcomes on melanoma mates I had decided that I wanted ipi/nivo which the consultant agreed to.

I commenced ipi/nivo in February 2020 and completed 3 cycles before the country went into lockdown. This was a frightening time for everyone especially the clinically vulnerable and I was really scared that if I caught Covid-19 I would die or that my treatment would stop. Luckily it continued although the appointments with my oncologist were phone calls only. I was fortunate I managed all 4 ipi/nivo and 2 years of mono nivo with minimal side effects. The first scan showed my tumours were shrinking and in July 2021 the scan was showing NED. All my scan since have shown NED. Looking back at the years of treatment and lockdown it seems unreal. As a family we had more time to spend together. I had a valid reason for leaving my house to attend my hospital appointment where I could see other people and one of the big positives was that there was no queuing for parking and the parking charges had been dropped.

I have since celebrated both my daughters and son’s 18^th birthdays, my husband’s 50^th and my daughters 21^st and her graduation from university. I have also celebrated our 25 the wedding anniversary.

 What advice would you give to other melanoma patients?

To do your research on treatments including new treatments and don’t be afraid to question. Before being discharged from care ensure that you have a CT scan as melanoma doesn’t always show any symptoms. If you can avoid having a complete lymph node dissection do as to avoid lymphoedema. Ask for help and talk to family and friends.

Why is Melanoma Focus important to you?

“The annual patient conference is invaluable, and not only do you meet other people who know and understand what you are going through, you make new friends and also get an update on what is happening in the world of melanoma.”

It’s a trusted resource for treatments and clinical trials. Also, you can read patient stories which give you hope for the future.

The annual patient conference is invaluable, and not only do you meet other people who know and understand what you are going through, you make new friends and also get an update on what is happening in the world of melanoma.