Christine

Being diagnosed - how it all started

In 2002 I had a small amount of sunburn on the back of my ankle which resulted in a small uneven horseshoe shaped mole which started to bleed after showering one day. This was quickly removed surgically with a wide margin, found to be malignant and almost ready to send cells to the rest of my body, or metastasise, as I now know this is called.

I was kept under the scrutiny of the local Dermatology department for 5 years and then annually reviewed at their proactive clinic for people like me, with a low immune system and a history of melanoma. Then, in 2017, during a routine check, an undeveloped melanoma was discovered and excised from just above the original scar. This came as a surprise after so many years, but after removing it everyone said “Job done!”

The elephant never leaves the room!

In 2018, I found a small lump under the skin on the inside of my thigh, on the same leg. Then, another developed, with no moles or skin discolouration. I consulted my GP and, after an ultrasound, it was decided that these were small blood clots in the superficial vein, so no need to worry. Another lump appeared and then another in a line climbing my thigh while the original lump became a large mass behind my knee. However, another two ultrasounds confirmed the original diagnosis and it was not until my GP sent me to see a vein specialist that an in-depth ultrasound showed that the lumps were definitely not in the vein.

At that point, I rang Dermatology for help and was given an appointment within a week. The Registrar I saw said she had never seen anything like it and asked the Consultant to also review my leg. After one look, they said that the lumps were all melanomas. A biopsy confirmed this so I was referred to Oncology and prescribed immunotherapy. By this time, there were 37 lumps spreading very quickly. All this had taken just a year without any treatment. Had I not started immunotherapy, the prognosis was that I would only survive for another 3 or 4 months.

The immunotherapy quickly worked to shrink the melanomas and, after a few months, like magic, most of them had disappeared. By the time we hit lockdown in 2020, I had received over a year of treatment and it was considered ‘safe’ to stop the immunotherapy, which is usually a 2-year course. I have 6 monthly PeT and MRI scans and so far, so good. However, immunotherapy brings its own challenges, the main one for me being that it has caused my adrenal gland to fail. I will be on steroids for the rest of my life which are, themselves, immunosuppressant. 

Why MedicAlert?

The Endocrinologist suggested that I get a MedicAlert ID bracelet or necklace to wear all the time and this advice was repeated by my MacMillan nurse. I was recommended to use MedicAlert specifically and given the charity’s leaflet by both. 

After some comparison research online, I realised quite quickly that MedicAlert offers a service way beyond an alert to medical staff and that it is the only company who has a nurse check, holds medical records accessible by phone and membership number, plus being a charity.

My full medical history is complicated - I have asthma and bronchiectasis, rheumatoid arthritis, metastatic melanomas, adrenal insufficiency and steroid dependency, history of DVT and pulmonary embolisms, right hip replacement, high blood pressure. Both my husband and I value and feel comforted to know that, via my MedicAlert ID bracelet and the phone number to MedicAlert to access my records, any paramedic or doctor treating me can do so knowing my problems before giving treatment. In the event of an accident, for example, I carry an emergency injection of hydrocortisone which must be administered to me quickly. My family and friends know about this but a stranger would not, so the medical history held by MedicAlert is crucial.

I consider myself very lucky. I’ve been attending a major hospital with expert Consultants, the melanomas stayed in my leg, although they metastasised quickly. Immunotherapy is now a recognised treatment which worked for me, but does not work for everyone. Chemotherapy does not work on melanomas and 15 years ago immunotherapy did not even exist! My Consultant says that the cancer will probably come back at some point but I can restart the immunotherapy again if necessary. He is optimistic that I will have at least 4 or 5 years but the elephant never leaves the room!

“I would highly recommend the MedicAlert service to anyone who might need special treatment in the event of an emergency. It is second to none and competitively priced with a good range of emergency alert jewellery to choose from.”

READ MORE ABOUT MELANOMA

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