This post has been in my head for many months but I didn’t want to write it too soon, not until I knew for sure when Livvy would be having this surgery. We visited St Thomas hospital in October and we now have an actual date for surgery, the 20th November, I guess with it being the first week of November it has made her surgery even more real for me, its no longer next month but just two weeks away.
It’s been a long time waiting for this surgery, the logistics behind it have been complex. You see she normally has all her surgeries at our local hospital in Nottingham and after ten rounds of surgery all with the same trusted surgeon and almost every time the same consultant anaesthetist its hard making the move to the Capital for her 11th time under a general anaesthetic. In many ways it feels like her first time once again, every time Livvy has surgery I have mixed emotions and some anxieties leading up to and during her surgery but this time there are so many more unknowns that it just feels so out of my control. In Nottingham we have built up what I consider a good relationship with the team and most importantly the surgeon, so you might ask why we are now moving her surgery to London?
The type of surgery that Livvy is going to be having this time is not usually performed on children therefore not all paediatric plastic surgeons are able to carry out this procedure. This could easily be sorted by having the surgeon from our London team travel to Nottingham to aid her normal surgical team carry out the surgery with the additional technique. This was to be the plan back at the start of the year however nothing is ever that easy.
Let me start at the beginning by explaining what I understand about this different type of surgery and what has made it a little more complicated for Livvy.
‘Mohs’ surgery, named after the doctor who developed this surgical technique in the late 1930’s, is used widely and successfully in the treatment and removal of skin cancer in adults. As I understand it, it is normally carried out with the use of local anaesthetic. As an adult once Mohs surgery has been deemed the most appropriate surgery for you one would have the area of skin in question numbed with local anaesthetic then whilst you are awake and fully aware of everything the skin cancer is cut away. The skin is cut in a different way to traditional surgery techniques and placed on a slide and examined under a microscope whilst you return to the waiting area, the cancer cells are identified whilst you wait and if needed you would go back and have more skin removed and examined in this same way. The surgeon may have to remove two, three, four or more samples of skin only closing the area once every cancer cell has been removed. You know once you leave the hospital every cell has been removed, its a very accurate surgery and whilst for the patient there maybe some waiting around it is done for your best interest to ensure that all of the cancerous cells are removed.
Previously when Livvy has had surgery she is seen either by the team of dermatologists in London or her consultant dermatologist in Nottingham and between the two hospitals a plan is put into place as to which lesions on Livvy’s skin are skin cancer and by what margins they are to be removed. All this information is conveyed to Livvy’s plastic surgeon who removes the skin cancer as per the instructions from Livvy’s wider medical team. Livvy is under a GA and the suspected skin cancer is simply cut out in one go.
Where this system has let us down is when the results come back, as although the surgeon can have a good idea that when he cuts out the lesions he has got everything out there is no true way of knowing until the skin has had a visit to the pathology lab. Normally the results come back after a week or two, it tells us two things, firstly if it was indeed a skin cancer and what type but more importantly if all cells where removed. Livvy has previously had two out of many many skin cancers come back as not being fully removed, which I don’t think is too bad considering how many she has had successfully and fully removed.
The problem now is how do we go back and get the rest of the cells out? The areas where we know some cells remain have healed and all that remains is a scar, I imagine its like working blind you are cutting the skin in the same area but you don’t really know what you are looking for or in which direction to go or how deep. When I explain Mohs surgery to Livvy she gave the best explanation back to me of how she understands it and I must say its the best way to describe it without over complicating things. What she said to me was;
“It’s like Ben and Jerry’s phish food ice cream, you know there are lots of chocolate fish in there, sometimes you go in and get a big scoop on your spoon. You think there must be a fish in there but when you eat it there are no fish! But if you take your time and just scrape small bits of ice cream off the top you can see a little bit of a fish poking out, they you can just work on that fish until its all out, you don’t get as much ice cream but you definitely get a fish’’
Livvy’s perfect 8 year old analogy of Mohs surgery, but she is so right, it takes longer to carry out but you know the whole fish (skin cancer) will be taken out, you don’t take away as much ice cream (skin) but its so accurate. I couldn’t explain it any better therefore I will just leave you with Livvy’s understanding.
The problem for Livvy is she is just too young to have this surgery with a local anaesthetic, she has to have a general anaesthetic, there is no way she would allow someone, no matter how much she trusted them, to keep coming back to her face and cutting it whilst awake. The microscope that is used during Mohs surgery that is able to look closely at the cells and therefore determine if all the skin cancer has been removed is not in a children’s hospital. Due to the simple fact that children, as a general rule don’t get skin cancer and if they do normal surgical procedures are sufficient as they have been for Livvy for the past 10 surgeries.
The problem is these two stubborn ones, if Livvys skin cancer was a one off then yes lets go back in and take a big chunk out and fingers crossed we get it all out, but we have to seriously consider tissue preservation. All 10 surgeries have been more or less in the same area, across her nose, cheeks and temple, the kind of areas where you would get sun burnt first on your face. We have no idea if this is the last time Livvy will need surgery in this area, her scars are evident making skin preservation a high priority.
The logistics behind this surgery have been huge, with machines being move from one hospital to another, surgeons working together to find space on a theatre list. I could write a whole blog post on the logistics and I’m sure I’m only aware of 10% of what has been going on behind the scenes, it feels like we have been waiting a long time for this surgery, but for good reason. I’m grateful to the medical teams persistence in organising Mohs surgery allowing Livvy to have the best and most appropriate surgery needed at this point in her treatment. It’s been talked about from day one but its only now that we are pulling out the big guns from our arsenal in our fight against skin cancer and Xeroderma Pigmentosum.
I hope my brief account of what I understand about Mohs surgery has helped you to understand a little more about Livvy’s current treatment method, I’m no medical expert and I’ve tried to make it as brief and simple as possible.