Hi,

This is my first post on the forums. I was told I had BCC by the Macmillan Centre in my area in June. However, when I attended hospital several weeks later, the consultant wasn't very pleased that I'd been told I definitely had skin cancer without a biopsy result. Therefore, instead of removing the growth, as I'd expected, he took a shave biopsy. It took 12 weeks to get the result, which was of a BCC on my lip margin. 

I was told that I'd need Moh's surgery to remove it, as it's in an awkward place (just above my left top lip, touching the margin of my lip). The waiting list is 52 weeks. 

I was concerned as I'd had the growth for at least 2 years and was worried that the cancer may have spread (having done some reading about it). I have repeatedly been told that this sort of cancer doesn't spread. However, according to my research, although it is unlikely to spread, it can and is more likely to have spread the longer you've gone undiagnosed. I have also been getting abnormal liver function results in my last few blood tests - including a GGT blood test, which I think confirms the abnormal results are definitely coming from my liver, as opposed to my digestive system etc. 

I am 50 and in poor general health, due to a number of other chronic illnesses, so it's difficult to know what illness is causing what symptoms. I have a blood disorder, arthritis, fibromyalgia, IIH with a shunt in situ to name but a few! I'm also on many medications.

Whilst on my Patient Access app, I saw that someone at my GP surgery had described the confirmation of it being cancer as 'nodular & infiltrative.' Again, having read about this, I understand it to mean that the cancer has spread in to other areas? 

None of the medics involved in my care have told me this! When I queried it at a routine appointment at my GP surgery, I was shown a letter from the hospital, using the terms above - nodular & infiltrative - but I have not been sent a copy of this letter,  although I usually get copied in to all letters. There are a couple of documents on my Patient Access that say I can't access them and then there is a report saying that my case had been discussed at a team meeting at the hospital regarding Moh's surgery, but that the letter shouldn't be 'shared with patient.'

Could anyone please tell me if my understanding of these terms is correct, in that the BCC has spread? My next appointment at the hospital isn't until mid February and that is just a consultation regarding the Moh's surgery. 

I would really like to know what it is, as it's my body it's happening to!

Thank you all for reading this and I apologise for the long post