"Denial of necessary information"

Left to suffer with an enlarging neck tumour for 10 years due to initial failure to diagnose it and being denied necessary specialised tests to get more information needed to make informed choices about care going forward.

There has been a persistent dismissal of valid concerns about surgery, past medical history  and other long term health problems; also difficult personal circumstances. I'm talked to like I'm a a naughty child instead of an intelligent person and disparaged by my valid concerns (which have actual scientific basis) being called "prevarication" (a word which implies I'm being deceitful which is not the case at all, my concerns are genuine and have never been properly answered).

Now bizarrely apparently I'm being told that there will only be an MRI done if I agree to surgery - which essentially feels like blackmail - highly unethical and contrary to the consent laws and guidelines. The enlarging tumour has not been biopsied or scanned for about 8 years and I was advised from elsewhere that it needed biopsied by a Specialist Soft Tiissue Pathologist and Sarcoma Oncologist because the general and thyroid pathologists previously were unable to diagnose the tumour - I have been denied this repeatedly.

Consultant says that it won't change the recommendation - which is based on now 8 year old data - tumour cells can change over time and recommendations are supposed to be based on current hard evidence and science not a pre-judged dictat imposed on the patient which ignores significant unanswered questions. Consent by a patient to treatment is only legally valid if it is fully informed and truly voluntary (i.e. without duress or ultimatums such as agreement to surgery, which puts pressure on the suffering patient and blocks access to other Specialists for further investigations or explorations to get more information about the exact nature of the tumour (eg why it has muscle tissue in it and stained positive for smooth muscle actin); any possible alternatives to surgery such as newer targeted therapies, specific genetic testing that would be helpful indicator any adjuvant treatments and closer monitoring required after surgery due to higher risk of abnormal tissue growth.)

Nor do I have confidence that the specialised soft tissue biopsy would be done on the resected tumour or that there would be input from an appropriate oncologist (many soft tissue lesions are rare and need very specialised care) as the interest seems only in the thyroid involvement (which is undisputed but does not exclude possibility of fibromatosis or another growth process at play here.)

Surgery makes fibromatosis worse if that were involved, it needs targeted therapies and adjunct treatments but I have been denied the specialist pathology and genetic testing for CTNNB1 or APC mutations and my history of fibroblastic lesions and familial bowel cancer has been ignored.

I also showed a new lump on my shoulder which was dismissed as being probably just "a skin thing" but did not refer me anywhere to get it checked out.

While I don't actually doubt the high surgical skills of the ENT Consultant, I am being denied my Patient's Rights to sufficient information for informed consent, my other health problems are being ignored, along with other concerns and evidence (which could affect surgery) and generally I'm being treated like I'm a nuisance (the consultant sounds annoyed when they speak to me ).

All of the above has put my life at risk ongoing due to the increasing growth of the neck tumour as I cannot in good faith consent to surgery without the necessary information that I have been so far denied. This heartless attitude about my health as a whole is also offputting - surgery without concern about the patient's wellbeing and longer term outcome is not healthcare and unacceptable in any modern health system.