Anne was diagnosed with stage 3A melanoma back in 2021, during the coronavirus pandemic, after she noticed a change in colour of one of her moles. After only tolerating adjuvant treatment for only a short while, she currently has no evidence of disease (NED) and is attending routine follow-up appointments. Anne has very kindly shared her story with us.
“Melanoma Focus has great trustworthy support for carers, patients and professionals which includes up to date information on all relevant subjects. It also provides research into melanoma and trials which I find very helpful and reassuring. The website is written in a user way friendly which is easy to understand. The charity is an excellent point of contact for advice and support.”
In February 2021, I noticed a mole, which I had had for years on my right breast, had developed a small dark spot on top of it. I was unsure exactly when this first appeared. This was during the Covid-19 Pandemic so I couldn’t easily see a GP. I had noticed the dark spot on the mole had become slightly bigger and had changed so I phoned the GP practice, sent in a photograph and was given a telephone appointment.
After some delay, in September 2021, I received a phone call from the dermatologist to inform me I had melanoma staged at T1b.
“A great deal of support was given by the cancer support nurse who really was amazing throughout my journey as she was able to co-ordinate with the necessary healthcare departments/professionals.”
I was referred for a wide excision and sentinel node biopsy. I was also referred to local oncology support/specialist nurse. Feeling very anxious, scared, sad and helpless at the diagnosis, these emotions were intensified by not knowing when the treatment would happen. A great deal of support was given by the cancer support nurse who really was amazing throughout my journey as she was able to co-ordinate with the necessary healthcare departments/professionals.
As a family we decided the quickest way forward was to have my SLNB privately, however, this was not plain sailing as it caused confusion with the mole being on my breast. Despite clear requests over telephone of what procedures were required, (wide excision and sentinel node lobe biopsy) I was told they were unable to offer the sentinel lode biopsy. I felt extremely let down, I also felt as though time had been wasted waiting with no positive outcome. Eventually, we found another consultant at a hospital 90 miles away. I was in the car ready to go when I received a phone call which told me the scan and operation had to be cancelled due to a lack of radioactive tracer dye used for the lymphoscintigram. I felt desperately disappointed. However, a day later the procedures were rescheduled to take place nine days later.
My wide excision was clear but micro cells of melanoma were found in lymph gland. My melanoma was staged at 3A. I was referred to NHS Oncology from my private surgeon to be discussed at a multi-disciplinary team meeting. As I was BRAF positive, I was given the option of immunotherapy, target therapy or regular follow ups without treatment. I commenced adjuvant targeted therapy with dabrafenib and trametinib in December 2021. I took this treatment for a month as I was admitted to a local hospital with neutropenic sepsis. The consultant oncologist thought that the risks from the medication outweighed the benefits, therefore the treatment was discontinued. It was scary choosing between targeted therapy or immunotherapy, naturally I just wanted what was going to be best! Starting the targeted therapy was a huge hurdle for me but something I knew I had to do. I was lucky outwardly as didn’t really have any side effects other than hot/cold feelings and to begin with a little nausea. Though systemically my white cells were not happy – I was given the choice initially to restarting the treatment and felt torn as I wanted the best ‘shot’ to try prevent the melanoma returning but once discussed with oncologist re risks outweighing benefits it was slightly easier to accept to not have any more treatment. My care after this was a CT of my head, chest, abdomen and pelvis every 6 months and dermatology every 3 months. Fast forward to today, all so far so good but I continue feeling anxious nearer scan appointments and if I feel any change in my health.
What advice would you give to other melanoma patients?
Definitely best not to google anything as you go round and round in circles and find things that aren’t appropriate (but also scary).Try not to worry about things that haven’t happened (easily said than done). Take each day at a time.
Anne’s powerful poem:
Anne has also very generously allowed us to share her poem with you. We hope this will help raise awareness about the misconceptions of melanoma skin cancer. Thank you Anne