Hi , I have been popping up on the forum mostly in what I hope has been some support for us all. Some of you might know my story. Many years ago I was diagnosed with and optic pathway glioma (brain tumour), treatment back then was a hefty load of steroids, radiotherapy and surgery. The very first imag scan for the head had just become available but my diagnosis was based on x-ray initialy. I had the steroids and radiotheray and was monitored very closely, was lucky enough to be at a specialised hospital in london who had one of the first scanners for my firts scan. It was noted that the tumour had stabilised and not grown further since the radiotherapy. so it was watch and wait for a couple for years. fast forward a few decades (four), I still have annual checks and there has only been marginal growth in the past decade, so still annual checheck and MRI every three years. These tumours tend to grow and invade locally but do not tend to metastesise they are also very slow growers so any changes can be acted on with out too much fear, the tumour is about the same size as my eyeball. I had developed a small lump on my lower left eyelid which I initially thout was a little cholesterol bump or something equally benign. when it started to change rapidly in the spring 2022 I went to see my GP who after examination and google images tried to reassure me that it was nothing to worry about. In my heart I think I knew what it was, it was the same side as the glioma and radiotherapy. Annual review was due in July so I thought I would bring it up then and felt another 8 weeks in the current waiting situation was ok. At my appointment the neuro ophthalmologist looked at this little thing with special lenses and slit lamps and whilst I was sat with her referred me straight to oncology at a specialist eye unitl that deals with the area around the outside of the eye. Was seen a week later by the oncologist, scan same day (no results yet!!) However using dermascope and a range of other lenses she was sure we were looking at basal cell carcinoma, the most common and easily treated skin cancer. During the radiotherapy for the glioma my pituitary gland took a big hit and so the side affects of that started to kick in and later in life became Hypopituitary with severe adrenal insufficiency ( I have to have rescue injections if I have adrenal crisis, a crisis can be fatal). The Oncologist felt that I should be transferred to another big hospital which also has the sister unit to the one I was at so the staff had access to intensive care if needed. Yesterday I was nil by mouth by 7am for a small biopsy with local anaesthetic to subtype the carcinoma ( there are quite a few within the group which I had learned about via this wonderful website) but also to stage it because some forms of bcc can become aggressive and not just spread locally. At my meeting with the surgeon yesterday he decided that we go ahead and remove the whole thing. No time for panic, over thinking etc, maybe a bit of anxiety, some relief that the cancer was going to be cut out. No general anaesthetic, I'm too high risk and even sedation was avoided. so with a large amont of local anaesthetic, a large dose of hydrocortisone on board (lack of adrenalin from the adrenal insufficiency) My emergency injection pack to hand for the surgeon I had my carcinoma removed. I didn't feel anything. They have had to remove a third of my lower eyelid and hope they have a clear margin. The lesion has gon to the lab for subtype etc. results should be back in a couple of weeks. The nurse said this surgeon like to push for the biopsies to be fast tracked incase they have to cut a wider margin. My follow up is in two weeks for post surgical reviw and three weeks for oncologist. The CT results are to see if there is local spread to the eyeball and brain. But I will cross that bridge when I get to it.
Question : The surgeon has said that I should ask my GP for an urgent referral to a dermatologist specialising in skin cancer because he thinks I have more and his area is eyes. One of the sub groups of BCC is Merkel Cell carcinoma which is a NET neuro endocrine tumour, the glioma belongs to that family and I am under Gastro and endocrine for something that enhanced in an MIBG scan last year with elevated blood markers. I know that my gp surgery will say no urgent referral unless written down by surgeon. has anyone else had luck with pushing for a 2ww withought a back up letter??
Love to you all
HM (Sarah) xxx
