*Apologies for the long post, but I’ve actually found it quite cathartic to write this after a very long few months.

Over the past few months, both before and after my wife’s diagnosis of melanoma, I have continually scanned this forum for any crumb of comfort i could find. I found that although there were a number of forum posts about the diagnosis, it was rare to see "after diagnosis" updates - particularly positive updates where there was no spread to the lymph nodes, which is absolutely understandable as people thankfully get on with their lives. I therefore promised myself to put up a post once we were through the initial diagnosis and WLE/ SLNB for two reasons, 1) to emphasise the importance of getting a second opinion/escalating any moles or marks on your body that don’t look or feel right and 2) to provide reassurance to anyone in a similar situation who like me, has probably gone through some very dark times.

My wife initially noticed a flesh coloured lump on her arm around a year ago, several months after the birth of our first child. She went to the doctors who diagnosed it as a dermatofibroma. A few months passed and we noticed that it had started to turn black, we felt that it was worth another visit to the doctors. This time, my wife was provided an appointment with a dermatologist, who took less than a minute to diagnose it as a dermatofibroma again. We both felt relieved, but still had a nagging concern. 5 months on and the spot continued to change colour and looked as if it was getting bigger and i encouraged my wife to go to the doctor for a 3rd time and demand that it is removed. She was again referred to the dermatologist and this time, the dermatologist decided to remove it there and then.

We waited 5 weeks for the results and were continually reassured by friends and family that if it was bad news, we would be told sooner.  It tends to be the default position of loved ones to try and say something positive that reassures you, but unfortunately the time it takes for results has little to do with the outcome. My wife eventually got a call from hospital and was asked to come in for an appointment in 2 days time.  My wife pushed the nurse for a telephone diagnosis which she eventually confirmed was a positive test result for Superficial spreading Melanoma, 2.1mm Breslow, non-ulcerated, 1 mitosis. The bottom dropped out of our world. Initially we were angry, angry that she was misdiagnosed, angry that professionals had effectively allowed the melanoma to grow for 1 year and angry that 2 opportunities were missed to remove it when the prognosis may have been far better.  We felt let down by the system, her concerns had been dismissed twice and she wasn’t even provided with follow up appointments to check on the growth. However, we agreed to put the anger to one side and focus on the next steps.

We attended the scheduled appointment anyway and the diagnoses was confirmed and were told that she would have a follow up appointment to discuss the option of having a sentinel lymph node biopsy which would determine the staging. Prior to the Biopsy, she was staged as PT3a. If the SLNB was positive you move into stage 3, if negative she would be stage 2a. She decided to have the biopsy, which was scheduled for 3 weeks time.

You read a lot on this forum about “Dr Google”. I spent hours scouring the internet and was amazed by how much of the information was conflicting. It was so easy to land on an internet page that would have you planning your own funeral. However, if you delve deeper, you do find information that helps you, such as this forum. I read a lot about the correlation between Breslow depth and positive Lymph node biopsies aswell as other negative prognostic factors, intermediate tumours of between 2mm-4mm have a c.20% chance of a positive SLNB (the doctor uses this to assist in your decision making for having a Lymph Node biopsy as around 5-10% will have some form of adverse event to the SLNB itself) You read a lot of about survival rates, which can be daunting, however, they do not take into account the individual factors of each case, nor the rapid progress in treatment options (the progress being made really is something)

The surgery itself went as well as it could, my wife was in and out of hospital within a day. The effects of the anaesthetic wore off quickly and although they took a large margin for the WLE she didn’t have too much pain in the arm. There was a little bit of swelling in her armpit but this is to be expected. The surgeon is on top of the post-surgery effects and appointments were arranged fortnightly after the procedure to assess progress. The worst thing for my wife was the fact that she was unable to lift our 17 month year old son for a hug, when she most needed it.

She was scheduled a further appointment to check on the wounds and was told that she would get the results if available at this appointment. We were of course incredibly nervous when the day approached, due to a backlog we were unfortunately kept in the waiting room for over and hour where my wife had effectively already decided the results would show a spread to the lymph node. Disappointingly we were told the results were not available, but the next morning received a phone call from the doctor telling her that they were clear. The WLE was clear and there was no spread to the lymph node. She will now have 3 monthly clinical skin checks for the next 5 years.

We were incredibly received, but also alive to the fact that the battle is not completely over. She is at risk of the melanoma returning, so vigilance is key, especially in the first 2 years.

I guess the overarching message here is to know your body, if it doesn’t look or feel right, get it checked. If you’re not satisfied, get a second opinion. Melanoma is vey treatable the earlier it is found, I still beat myself up for not being more assertive in getting my wife to return to the doctors sooner as I think in my heart of hearts, I always questioned the initial diagnosis. Fortunately we still caught it in time, but the past 3 months have been fraught with fear and concern. We will be writing to my wifes GP and the dermatologist she was first referred to in the hope that they could learn from this misdiagnosis which will help someone else in the same position. Finally, I hope the post offers some reassurance to any lurkers reading the forum, looking for a crumb of comfort, scared about either their, or their loved ones diagnosis that the prognosis if it is caught relatively early is usually good and the initial excision will usually be the only treatment required. Just make sure that If in doubt, get it checked out.