Warning: there is graphic content in this post. Continue at your own p-ear-il and if you’re easily queasy maybe st-ear cl-ear 😂
There’s not much of a bigger vibe killer than being told you have cancer.
The doctor at the skin cancer clinic delivered me the news over the phone on a Wednesday afternoon whilst I was at work a couple of months ago. Trying to be discreet at a breakout bench in the corner whilst creatives debated the hue of a commercial just metres from me (damn open plan advertising agencies), the doctor told me the small mole on my ear she had biopsied out of diligence (“even though I am almost 100% confident it is benign”), was a melanoma, and “yes that does mean it’s cancer, but I am going to arrange a plastic surgeon to remove the whole thing ASAP and then we can talk next steps” 😰.
I barely managed to gather my belongings before rushing out of work and straight to her office in the midst of a breakdown. I spent what seemed a neverending Uber ride envisaging my hair falling out and trying to imagine how I could possibly fight MS and cancer at the same time, much to the discomfort of the driver who I’m sure has never had such an emotional wreck in his car.
Thankfully the doctor explained it was not quite so extreme, and the chances of the cancer having spread were minimal. In essence I would need a fair chunk of ear removed and perhaps a skin graft, but would also require monitoring for the next 6 months so I would need to cancel my move to London. I would be crazy to leave the skin cancer capital of the world for treatment elsewhere right?!
I spent Thursday morning wailing on the phone to my insurer and feeling sorry for myself. I was devastated UNTIL I went to see the melanoma specialist that afternoon. He took one look at the pathology results, and then one look at my ear, and announced that the results were inconclusive and that he would take the entire mole off for further testing, but it was likely actually benign.
In any case, even if it was a melanoma he seemed to think we could do the surgery on my ear and then send me on my trip! So I laughed a lot at how silly the whole thing was and how my world was actually not crashing down, and then toddled off content with life again.
I had felt nauseous in the lead up to my appointment with the dermatologist, yet despite his largely positive outlook I felt progressively sicker over the next 2 days until I realised it wasn’t psychosomatic and ended up in emergency on Saturday. I couldn’t have possibly imagined that my melanoma diagnosis (and possible undiagnosis) were going to be overshadowed by a bigger medical crisis that week, but lol! My body! My bloods taken in emergency showed that I had severe neutropenia (you can read about that here and here if you feel so inclined). Cue 2 months of horror.
Once my focus moved onto the disaster zone that was my blood and immune system, I really could not have been less disinterested in what was happening with my ear, mainly because I was so confident it was insignificant. My dermatologist called me a few days into my admission to let me know his instincts were correct – the lesion that he’d just cut off my ear had come back as benign, although out of diligence they’d request the initial biopsy that the skin cancer clinic had taken and retest it. And luckily they did 😑
The original biopsy was not a false positive. Somehow the cancer had been confined to that small sample, which explained why the rest of the mole once removed had come back as benign. Hearing that I had confirmed malignant melanoma whilst I was already in hospital for a blood crisis just about pushed me over the edge. And because my GI tract had decided to take a leave of absence I couldn’t even drown my sorrows in chocolate. Give me a freeeeaking break.
Although I was an inpatient at Monash, I was referred to the Victorian Melanoma Service at The Alfred for further treatment, which at a minimum would consist of removing margins around the site of where the melanoma was to be safe. Several dermatologists from the VMS called to speak with me during my first weeks in hospital, but by the time the diagnosis was confirmed I had begun to deteriorate quickly from neutropenia. There was a lot of back and forth between my haematologists at Monash and the dermatologists at the VMS as to what was more critical, and the neutropenia won out. I had feebly tried to convince my doctors at Monash to sort out the melanoma whilst I was in so I could get it over and done with, but whilst I was such a high infection risk I was a no-go zone for surgery.
Not that they had a choice, but the dermatologists were happy for the surgery to wait, so it couldn’t be that bad right? I also reasoned that I’d had every test imaginable (at least it felt like it!) as an inpatient, so if the cancer had spread one of my numerous medical teams surely would have picked up on it already. So that made me feel a bit better. I continued to focus intently on my failing bone marrow to the point that several times I actually forgot I had melanoma until I was reminded.
Eventually my neutrophils recovered and I was discharged (🎉🎈🎊) and it was time to deal with my ear! Assuming that I would only require a wide margin excision around the original site of the melanoma, I turned up to my appointment at the VMS expecting to hear how the plastic surgeons would magically rebuild my ear afterwards.
First up, my ear would never be the same. My melanoma’s thickness was 1.5mm, placing it in the intermediate bracket, meaning I needed 10mm margins removed. Given that my melanoma was on my ear’s helix (the edge), this basically meant a 2cm x 1cm rectangle would need to be cut off my ear – which is pretty significant when you think about the size of an ear! Once my ear had recovered from the wide margin excision and pathology had confirmed that the edges of the margin were clear, I could have a second surgery to reconstruct my ear. My options were to keep the ear as it was after that (ie. have a scalloped ear), or to have some kind of ‘flap’ procedure which would recover the shape of the ear but result in shrinkage. I WOULD HAVE A TINY EAR.
We then got to talk about biopsying my lymph nodes to see if the cancer had spread. I have had a zillion biopsies in my life. The doctor numbs the skin, then using a probably scary big needle (I never look) takes a very small sample of tissue. So I had assumed that would be the case this time too.
The dermatologists and surgeons wanted to perform a sentinel node biopsy. We know that metastatic cancer is overwhelmingly likely to have spread to the closest lymph nodes before anywhere else. With melanoma on the arm you would check the lymph nodes under the armpit, with melanoma on the leg you would check the lymph nodes in the groin. The issue with melanoma on the head is that there are multiple lymph nodes under the cheek and all around the neck that the cancer could have spread to, which meant the biopsy would be a 2 part process:
- I would have radioactive dye injected into my ear and then have my head scanned to see which cluster of lymph nodes the dye drained to first. There was a chance that the dye could spread to multiple lymph nodes, meaning I would need them all biopsied.
- The doctors kept calling it a biopsy, but I would actually have the lymph nodes entirely removed! The plastic surgeon told me that dependent on the lymph node location, the incision to remove the lymph nodes could be anywhere from 1cm to 10cm wide, but if it was under my cheek for example he might not know how wide he would need to cut until he got in there.
I booked in for surgery and left The Alfred pretty distraught. I felt like my face was going to be left disfigured after a sentinel node biopsy, and I was convinced my ear would look so tiny and weird after the reconstruction that I considered not having it reconstructed at all and just keeping the gaping chunk in my ear – I actually thought that would look more normal 😂
I also didn’t really understand what the sentinel node biopsy was going to achieve as the dermatologists and plastic surgeons at the VMS had all told me it wouldn’t affect my prognosis, so I decided to go back and see my private dermatologist who I trusted (and who happens to be the head of the VMS!) so he could explain everything to me before I decided what to consent to.
Ultimately I decided against the sentinel node biopsy, and pushed to have my reconstruction done in the same surgery as the wide margin excision. I was still not feeling too great about having a tiny ear, so my awesome dermatologist suggested a skin graft which would retain the size of my ear, but would mean that the top of my ear would be a different colour to the bottom of my ear, and they would take the graft from my neck which would leave a big scar. So in the end I opted for the bloody tiny ear.
The plastic surgeon showed me the above photo to explain what they were going to do to my ear. Something about cutting along the purple dotted lines and pulling the skin backwards. He said the words ‘flap’ and ‘triangle’ a lot 🤷. I was mostly reassured that the ear didn’t look hugely smaller afterwards 😂
The surgery was only a day procedure, so after managing to get a cannula in one of my sad sunken veins, I woke up and it was all over 😁
The worst part after surgery was keeping my head wrapped in a compression bandage for a week.
But finally it was time to take the bandage off, and it was not as bad as I thought!
The image above on the left shows what my ear used to look like (post melanoma excision), and the image on the right shows my ear straight after bandages came off from the wide margin excision and reconstruction. It is maybe 30% smaller (not as tiny as I’d feared!) and my piercings have been pulled around to the side, but it still looks like an ear, hooray!
Given that melanoma is overwhelmingly caused by a build up of UV exposure, it’s unusual that I’ve got it at only 24, especially given how fanatic I am about applying sunscreen! But it seems my immune suppression combined with my primary immune deficiency may have had a hand with it (wreaking havoc? Who, my immune system? 😮). In any case, if daclizumab hadn’t caused my neutropenia it is likely I would have had to stop it anyway. Although some monoclonal antibodies are used to fight metastatic melanoma, my dermatologist said daclizumab could have made it worse. Seems daclizumab and I were never destined to be friends!
From here on, since I didn’t have the sentinel node biopsy, we are going to monitor my lymph nodes closely for signs of spread (unlikely but I seem to have the worst freaking luck), and I’ll have skin checks every 3 months for the foreseeable future.
I can wholeheartedly tell you that getting a tan is NOT worth it. Do yourself a favour and get a skin check 😘