Paitent Stories

Andrew Combes

Merkel Cell Carcinoma

You never forget the announcement. “You have Merkel cell carcinoma”. You have never heard of it before, and your seemingly benign lump or bump instantly becomes far more sinister. It has never bothered you, doesn’t hurt, itch, or feel hot. This diagnosis is a shock.  

Everyone will react differently to the news; in my case it was the second time I had been told I had cancer. The first was seven years earlier and it was prostate. We all know at least the basics of prostate cancer but Merkel cell carcinoma (MCC) was, for me at least, much more difficult to comprehend. Due to some unusual circumstances the news was not given to me by a doctor and it was a couple of weeks before I had a consultation. Well let me tell you that Dr. Google is not your friend under such circumstances! There is information out there of course but what I learned over the following weeks and months is that the reliable sources are very often quite out of date, particularly when it comes to survival rates. The picture is improving constantly with much research ongoing around the world. The data takes a long time to reflect those improvements. That is what I was told quite emphatically by several eminent oncologists with ongoing research programs. 

With an MCC diagnosis you will almost certainly feel very much alone -nobody you know has it or has had it and nor has anyone they know. We all know friends and family that have been through cancers of many types, breast, lung, prostate, stomach and on and on. But because MCC is so rare the chances are you will know nobody that has this particular disease. A friend of mine was visiting his very busy dermatologist about a week after my diagnosis, and I asked him if he would pose the doctor one simple question. “How many cases of MCC do you see in a typical year”? The dermatologist said that he had been practicing in a big city for 16 years and in that entire time he had positively identified just one case. I went out and bought a lottery ticket on that news, well, why not? [It didn’t work]. 

My primary tumour started life as what I thought was a bug bite, a very common misconception apparently. It remained a small hard lump for a year or so and then suddenly started growing rapidly. At that point I went to my GP and she arranged for a biopsy. By the time that sample was taken for pathology the previously tiny ‘bug bite’ had grown to 3.5cm and felt like a fried egg in cross section from my prodding. They can grow quickly these things. But it remained entirely innocuous otherwise – no itching, pain or sensation of any kind. 

When staged I was 3b, an advanced form of the disease. There is a very precise and involved scale for staging MCC and I tried hard to understand it. I’m a terrible patient like that; I need to try and understand everything. Maybe I have too much time on my hands, but for me it helps to know the what, why and when. It is something I would encourage any patient to do so that they have at least a basic understanding of the disease. 

Staging considers the size and location of the primary tumour, if it has spread locally to lymph nodes or possibly to distant organs. This is done by PET/CT scan. A radioactive goop is introduced into your bloodstream and then one is left alone for a while as the magic happens. The magic is that any cancerous cells will accumulate around them the radioactive component of the goop flowing through your system. The next step is literally a step – onto the flat bed of the PET scanner. This will likely be set to cover your entire body top to toe with several passes being made. There is a lot of computing involved but what your oncologist ends up with is a computer model of your entire body slice by slice. Any cancer present will show up as bright green or yellow spots on the screen – that is the radiative medium that is attracted to the cancer cells. 

My primary was of course quite a dazzling little display and that was expected. Less welcome was to see that one of my underarm lymph nodes was also glowing. And thus, I was staged 3b. It was time to act very quickly. 

There were a number of discussions with my treatment team – it is multidisciplinary, and I had a lead medical oncologist, a surgical oncologist, a radiation oncologist and for a good measure a specialist dermatologist. There is no one size fits all regime for treating this skin cancer. Every case is different and as you progress with treatment there will be very much an iterative process. 

In the end we agreed upon a fairly standard regime for me. A month of immunotherapy using a drug [Nivolumab] that in effect pulls back a protein cloak used by the cancer cells to avoid detection by my own immune system. This to be followed with surgery to remove the primary and the lymph nodes if considered necessary. After a period of healing to allow the scar to knit a course of radiation directed at both the site of the primary and the impacted lymph nodes. 

I knew little about immunotherapy before that point but read copiously and then worried about the many reported side effects. Don’t do that! One of the good aspects of MCC therapy is that generally just one drug will be employed. The vast array of side effects you can read about on the internet are far, far less likely to arise when using a single drug. And that was pretty much my experience. Two infusions two weeks apart and really very little side effects at all. Maybe a little fatigue after the second but it was short lived. 

The tumour did not have such an easy time on the immunotherapy. In a month that thing started to diminish, slowly at first and then with gusto. I could feel it become thinner through my skin and watch the outer edges of the ‘fried egg’ recede. That is a great feeling. It is proof positive that your immune system and the immunotherapy drug are working well in concert to expose and destroy cancer cells. By the time of my surgery that 3.5cm fried egg had become just 4mm of viable tumour. 

In my case the surgery was very straightforward – the primary on my arm above the left elbow was resected with wide margins and in the end two lymph nodes were taken in addition. It felt good to be rid of the invader.  

The surgery scar took a few weeks to heal but before too long the surgeon gave the OK for the radiation therapy to commence. First up, ‘mapping’ – application of the radiation is a very precise job done over several weeks five days a week. One has to be positioned in exactly the same position each time. Onto a scanner again in a room full of technicians and my radiation oncologist and even a physicist or two. Bathed in laser grids, measured and positioned this way and that while two beaded bags were made to hold me in position. Finally, a couple of tiny reference dots were tattooed into my arm and I was then given my schedule. Just minutes a day but every weekday for the next five weeks. 

MCC cells are extremely sensitive to radiation and it is a very effective therapy. It doesn’t hurt but over time the skin did become a little red and thickened some. I finished that about six or seven weeks ago and now the scar sites have pretty much returned to normal. 

I hope this personal recounting helps if you are starting a course of therapy for MCC. For me the entire process was almost entirely painless and without any memorable side effects. At the time of writing there is no measurable tumour DNA in my system. Checkups will occur each quarter for a couple of years. 

I have learned a lot in a relatively short time. I know the recurrence stats inside out. But what I know most of all is that this is a very dynamic field for research and that advances are being made that improve the long-term outlook for MCC patients everywhere. You are not alone, you are just the latest member of this small but growing community.