Ellen's Story

Melanoma does not always look like Melanoma

This is my story about how a simple cyst turned out to be Melanoma

During the summer of 2007 I noticed a lump on my head above my ear. My GP told me it was a sebaceous cyst and nothing to worry about, but if I wanted to get it cut out he would refer me to someone. I decided to leave it and it disappeared which was a great relief. However a couple of months later it re-appeared, as my GP was on sabbatical leave for three months I decided to leave it until he came back.  By the time he returned it had grown reasonably big and he said "It needs to come off" and referred me to a skin specialist.  

 

The skin specialist also diagnosed of a sebaceous cyst and a quote of $2000 was given to have it removed, which I considered to be too expensive. Thinking it was not life threatening I asked my GP for another referral. The next skin specialist made the same diagnosis and an appointment was finally made for removal.

At the beginning of the operation to remove the "cyst" the nurse was told it was a sebaceous cyst and would not need testing. After the surgeon cut out the "cyst" he told me that he was concerned that it was a melanoma and that he had not been able to remove it all, so I would need further surgery. On the way out I heard him telling the receptionist to make contact with a surgeon and I thought then that is must be melanoma.

The results came back, and yes it was melanoma. I had to have a CT scan and a sentinel node biopsy, which is a procedure where I had dye injected into the lesion on my head, and photos taken so that they could see which lymph nodes needed to be removed. Waiting for the CT scan results was terrible and the relief I felt when the results came through as all clear is indescribable, I still feel that it is a miracle that it had not spread into my organs.

A few days later the surgeon told me that I had Level 5 melanoma, 12mm deep. I had never heard of the Clark's Levels until that day and to see the graph of how bad my melanoma was stunned me. I was told that if I didn't have an operation I would have six months to live. The surgeon then told me that the operation would take four and a half hours and involve removal of lymph nodes and a skin graft.

I had less than one day to organise my business so that I could take time off, as well as preparing for the hospital stay, my first time in hospital except for having children.  That in itself was quite daunting. I didn't really have time to absorb what was happening to me. When I came to after the surgery I could hear my GP's voice saying "it is serious" and I think that was when reality hit me.

The surgery was successful. But another spot was found which was also melanoma. So now I have to live with the fact that my melanoma is metastatic. I was referred to an oncologist for radiotherapy. During the consultation I mentioned a lump that I had felt, which turned out to be yet another melanoma which had to removed before radiotherapy. I had 4 weeks of IMRT, which is an advanced mode of radiotherapy planned using CT images. The team at Oncology considered this to be the best treatment as my tumour had been close to my brain. Since then I have had another melanoma off my back.

I now am facing an uncertain future but I am determined to beat the odds and to have many more good years before I die. I am having constant check-ups with my GP, Surgeon and Oncologist and 6 monthly CT scans so am being closely monitored for anything that shows up and that is dealt with very quickly. I will have to wear a wig for the rest of my life and I know I will have to get used to having surgery to remove melanomas but I am just so lucky to be alive that these things are a small price to pay for the extra years that I can spend with my loved ones.

I feel blessed that I have an excellent Surgeon, who is passionate about his profession and a fantastic GP who is fully supportive, encouraging and has emphasised the importance of being positive as it is known to help the immune system. Everyone at Oncology at Waikato Hospital has been fantastic.

I would like to advocate that anything that is cut from the body should be sent away to be tested. I will always wonder if I had what appeared to be a cyst removed early on would it have been sent away for testing, and if not where would I be today?

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