I was motivated to write this post, by an article sent by Blood Cancer to me this morning, entitled ‘Second Opinions’.
I thought it somewhat coincidental as my last few Posts have been on this subject.
In July I had been told that I was going into Chronic lymphocytic leukaemia (CLL) treatment after 5 years of W&W. About this time I also developed what I was told, was 'Bells Palsy, and put on a 10 day course of Steroids.
This did not work, and I was sent for an MRI Scan, which showed a small tumour travelling from my Mandible area, to my Skull Base.
I was told that it was not ‘Bells Palsy’ but a palsy related to the tumour. I was also told that it was inoperable due to my age and complex medical history. and informed that I would be on Palliative care, not Curative.
i was sent back to the NHS for treatment, as Private care cannot deal with certain serious health conditions. The NHS consultant sent me for a neck and body scan, and a two needle biopsy of my neck, left and right side.
This confirmed the presence of the tumour, but as it was inaccessible, they could not get a Biopsy of it. It also confirmed that my Lymph nodes on my right side neck, and body, had grown substantially, and Chronic lymphocytic leukaemia (CLL) treatment was likely. However, this would be put on hold until the Tumour was dealt with.
I was also sent back on the 29th, September, to the same Radiologist, who tried another method of obtaining a Biopsy. After much contortionist type maneuvering, and discomfort, he managed to obtain a sample of sorts. He told me that he wasn’t sure if it would show what the tumour was. (Result awaits)
Given that the prognosis was dire, in the extreme, I decided to get a 2nd opinion from the ENT man who originally diagnosed my Chronic lymphocytic leukaemia (CLL) in 2018, and who also saw me last year regarding my neck nodes. One of his specialisations is ‘Neck Tumours’., and he is familiar with my medical background.
I saw him yesterday, and I am so glad I did. He checked all my MRI and Cat Scans, and went into a detailed time line from when I first noticed the Palsy, and asked searching questions regarding the symptoms I have had since.
He was surprised at the Palliative, not Curative statement, and also, the fact that an Operation had been ruled out. He is also of the view that my Palsy is in fact a ‘Bells Palsy’, but one that is permanent, as many are.
Given my 40/50 year old mixed parotid tumour history, (Pleomorphic Adenoma’s) with radium treatment, he thinks that it may be a residue from that time.
He is not at all sure that it is in fact a tumour, as if it was, my symptoms would be different, with very painful earache, and neck base pain.
He of course stressed that until he gets a result from the Biopsy, he cannot be one hundred percent sure. He went on to say that even if it was a tumour, be it, benign or cancerous, there was a good chance that it could be operated on.
I had been told by the NHS ENT man that after the result of the Biopsy, that I would be transferred to an NHS Hospital in Edinburgh and come under their Multi Disciplinary Team (MDT)
I was delighted to find that my 2nd opinion ENT man would be in charge of my treatment, as he also works at the Edinburgh NHS hospital involved.
He examined my face palsy, and is sending me for an operation within the next two weeks, on my eye, and mouth, which will not only be Cosmetic, but practical in that I will be able to see clearer and eat without constant dribbling. (It will be a relief to dispense with the straw, and ‘Baby Bib’ I have been using over the last two months.
My Chronic lymphocytic leukaemia (CLL) treatment is still on hold, as is my half tooth extraction, until the other matters are resolved.
In relation to my Chronic lymphocytic leukaemia (CLL) I am also getting a 2nd Opinion on the 16th of October. I am very lucky that I am being very much encouraged and supported by my GP and ENT man.
In conclusion, I am aware, that 'Second Opinions can be a contentious issue, amongst some. One of the factors involved is that no one want to upset anyone. Or it may be that they feel that if they ‘Rock the Boat’ their treatment may be affected in some way. Or it may be loyalty to the NHS. (It is fairly easy to get an NHS a second opinion too)
I understand and respect all those reasons for not going down this route, and it is a personal thing, I think. However I would certainly advocate it, especially for life threatening diagnosis.
All he very best to all. Ron