Between diagnosis and my first appointment

I don’t remember when exactly, but a thin grey well defined stripe appeared under my big toe on my right foot. It was perfectly parallel and ran the length of my toe nail. It was about 4mm wide and I didn’t make much of it. It looked like I had taken a wide marker pen, and ran a stripe along the length of my nail.

When I noticed it, I thought that something must have dropped on my toe, or I must have kicked something without noticing it and got the dark stripe which I associtated to a bruised toe nail. I think everyone has at one stage banged the car door on a finger or accidentally hit it with a hammer. You usually get a bruised nail and over time as the nail grows, it gets pushed up and goes away. That is what I thought I had, so I made nothing of it and let time pass by, thinking it would go away sooner or later. I do recall, that the perfect stripe also made me think that it might not be a regular bruising, for being so well defined, but once again made nothing of it. I didn’t photograph it at the time, but I found a picture on the internet that looked very similar to what I had when I first noticed it. It’s the perfect stripe, mine was slightly wider and more towards the right side of my toe.

Some time did go by and it didn’t go away. I thought it was strange but ignored it and also didn’t think that it warranted a visit to the doctor. It didn’t hurt, looked slightly different but no reason to get it checked out as it seemed to be purely cosmetic. That is the problem with Acral Lentiginous Melanoma. It is a very rare form of Melanoma and more aggressive and with porter prognosis than common skin melanomas. It isn’t caused by sun exposure and usually appears on soles of feet and on skin that is hairless and also appears under your nails. It’s dangerous because it goes undetected for long periods of time, many times being misdiagnosed and when you do get to do something about it, it may be too late. Late in the sense that this is a malign tumour, a sheep in wolves clothes, looks harmless, but then spreads to other parts of your body through your lymphatic system.

It’s dangerous, because there is a risk that you look for help once it has already metastasised to other parts of your body and be more complex to treat. Apparently this tumor has a tendency to Metastasise on organs like liver, lungs and brain. How crazy is that? You would never think it would have started on a grey stripe marked on your toe nail! The irony and fragility of life…how can something apparently so innocuous be something that could actually cut your life short?

Anyway, one day while getting out the shower, I pressed on my toenail and a bit of blood seeped out below. I still thought it was a bruised toe nail, so it wasn’t until the summer of 2017 that my wife who had been insisting with me before, insisted even more that I see a dermatologist about it. By now the mark under my toenail was starting to look darker and the toe nail had begun to soften around it. That seemed to convince me that maybe it was just a fungus I had caught somewhere*. I kept forgetting to call the dermatologist and did it more because my wife insisted. When I did finally remember to call him, he only had an appointment in late November which for me was ok, since I wasn’t dealing with anything that was urgent. It’s a good thing I did call and that I listened to my wife…like a very dear friend of mine says “married men live longer” and I hope to be a testimony to that phrase!

When the appointment finally came around which was Wednesday the 29th of November 2017, the doctor suggested I come back on the following Monday for a biopsy. Since a biopsy sounded serious, I asked him what that meant and he told me that there was no reason for alarm. I was told it would be important to understand what type of cells were under my nail so that the doctor could know what we were dealing with. I came out thinking it was a type of birthmark that had started growing under my toe nail and that there was no reason for alarm.

The next week, on that Monday 4th of December, I went in for the biopsy. Feet and toes have a lot of nerve endings and are pretty sensitive so it wasn’t a pleasant experience at all. The samples were sent to the lab and we waited for a few days. The dermatologist mentioned in his request to Pathology what his suspicion was, but I shrugged it off, thinking that it was just protocol, didn’t apply to me and frankly didn’t lose any sleep over it.

On the 13th of December 2017 I got the results from pathology. I received the email confirming Acral Lentiginous Melanoma. I showed it to my wife and when she read it, she burst into tears. Probably because being a Doctor herself, she understood what that meant while me on the contrary had no idea what I was dealing with. The following days went by pretty quickly between getting referred to between Doctors and ending up at the Portuguese Institute of Oncology in Lisbon. If it wasn’t for my wife insisting that I get this checked out by a proper specialist in this area, I would never have gone to the doctor for this. I would still be here, oblivious to what was going on in my toe, while the tumour would keep growing and likely spread to vital organs that are key for survival. How screwed up is that? I know I am going to beat this and get well.

From here, things started moving quickly, but literally felt like an eternity. The first two or three days you are still in denial and caught by surprise while taking in everything. It slowly starts sinking in that you are dealing with something serious. You start searching for photos to understand just how long you have had this for, since it is a determining factor foro a good prognosis. When you look at the photos, there aren’t many summer pics with flip flops and at an angle that you can see your toe nails. We worked out that I have probably had this for about about a year and half as we don’t recall having noticed it on our honeymoon. As the days go by, so does your anxiety level, you start looking for answers to the gizillion questions running through your mind. That first appointment took forever to happen and it was just a week away!

I have been blessed with health. I am a 45 year old male and between having had my appendix taken out, I have never had any health problems. I am an architect and run a successful practise in Lisbon and my only ailment until now was working too much. I live in the city of Lisbon in Portugal and consider myself fortunate to live in a country with free healthcare. I was referred to the IPO (Portugueses Institute of Oncology), a hospital that deals exclusively with cancer and where my first appointment took place.

My wife is a doctor, currently specialising in Pulmonology and during her training she spent a few months at the IPO in the lung cancer division. On a few occasions I picked her up from there at the end of her day or to take her out for lunch. While I sat in the car and waited for her, I saw patients going in and coming out of the hospital. I thought of them and imagined how challenging it must be to be diagnosed with cancer.

I never imagined that I could get cancer….it was something that happens to everyone else. It is still difficult for me to say it today that I have it. I push it to the back of my mind like it doesn’t exist or it doesn’t apply to me. But it does. Unfortunately it does. It changes your perspective of things. I sat in my car at the gates of the cancer hospital and as much as I could have tried, I truly couldn’t relish that moment that you appreciate that you are healthy and fortunate you are. You do, you inadvertently think how lucky you are to be healthy, but it is only when that is threatened to be taken away from you, that you understand just what a big deal it is.

Little did I know, that one day it would be me, walking in through those same gates to get treated for cancer.


* it wasn’t a fungus but in actual fact, it was the tumour increasing in thickness below the toe nail. That thickness is key in detecting the state of the tumour, where the thicker it is, the worse the prognosis is. I will know what thickness my tumour was on the 30th of January and understand how far it developed.

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