A little bit of background first. My melanoma started on my upper leg just above my knee, on pretty much the line where my shorts would end. I was diagnosed on 1st November 2017, some months after earlier wrong diagnoses, but that’s another story for another blog post. The tumour was removed in the same month and I was told a wide area excision would be needed after some time.
I was asked to consider a Sentinel Lymph Node Biopsy (SLNB), that would be conducted at the same time as the wide area excision. That biopsy would provide information but not necessarily anything more, it would however enable you to take part in future drug trials and treatments such as immunotherapy, which wouldn’t necessarily be available otherwise. It also enabled follow up “maintenance” to be in the form of six monthly CT scans rather than relying purely on touch and feel inspections by the consultant.
The way it was originally described to me it sounded like a simple little process as part of the operation, so it seemed a bit of a no brainer. I was told I’d have to move to another hospital to have the wide area excision and the SLNB, as the equipment needed for the latter wasn’t available where I was currently. That meant moving my treatment from Peterborough to Addenbrookes in Cambridge, and as I live in Lincolnshire that was the start of what was to become a very (too) regular, and often arduous, 100 mile round trip, for ongoing treatment.
So I agreed, and then had a meeting with a new consultant at Addenbrookes. Basically he put the fear of God in me! By bringing out all the risks that this simple little process could actually produce. So now I was in a little bit of mental turmoil, should I or shouldn’t I, what are the pros and cons?
But I decided, surely information is better than no information and despite this being an early point in what has turned out to be a long and ongoing journey for me, I chose the option with this thought of being better prepared in mind, and also about potential future treatment opportunities being opened up, despite that seeming a far and away distant thought. Sadly now a reality!
My point is that if you are offered this SLNB option you should take it. The more you know about the way your melanoma is acting, the better for you, because treatment early is the best treatment. Waiting for something to develop to a detectable size isn’t in my opinion a good idea. Just hoping that you’re ok internally and not checking it properly isn’t a good strategy, it might feel better, ignorance as they say is bliss, but why take a chance when you don’t have to?
In the days before my operation a lump flared up in my groin, so big that it was easy to detect. Whilst I went through the process of preparing for the SLNB on the day of the surgery, with the dye inserted into my leg to find the pathways to the nearest node, the consultant just removed the lump I’d felt, because it was obvious, it didn’t need the pathway to identify a potential lymph node to test, there was a palpable node standing out literally like a sore thumb!
As I was preparing to leave the hospital some hours after the operation the consultant called me and told me that he was pretty sure the node he removed was cancerous and before waiting for official results I should consider a next step of having a block dissection in my leg taking all of the lymph nodes in that area out, which is a major operation. That wasn’t the best of news to receive as you’re preparing to leave hospital just hours after surgery, believe me! It led to a lot of soul searching to consider what to do, which I will save for another blog post.
I didn’t get away without the after effects of SLNB that had been threatened. But I did overcome them!
My leg was very sore, naturally. I developed a seroma, the size of an egg where the infected node had been removed, I had to make several trips to hospital to have the seroma checked, it wasn’t drained it was decided to leave to resolve naturally. I had some lymphedema, my ankle and lower leg swelled and I had to sit with my leg raised at home and sleep in bed with it raised on cushions too. It took me 4-5 weeks to get on my feet properly and my mobility back to something like normal.
But that was it. The point is you will overcome it, the body has a great ability to repair itself. Of course the prospect of pain and problems isn’t a good one, but through positivity, determination and application to overcome it you will. There’s another very important factor in how you respond, and it’s how you prepare yourself through diet and fitness, and mental attitude, this is a major factor in the battle against cancer and I will write separately on this key subject soon.
To recap, in these circumstances I don’t believe a surveillance approach is in your best interests, it’s rough and ready when you could have precise information, good or bad, it is better to have knowledge than be in the dark, it really is.
My melanoma was spreading, I’m glad I knew. There’s a lot more to the story to follow…..
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