Since childhood my son had a small ball type of growth in the left side of his neck just under the chin. After showing it to doctors in the UK and abroad, some said ignore it as this is normal lymph nodes enlarging to fight infection. We noticed in 2008 then aged 10 that this ball was bigger and more noticable. Again we saw doctors and only 1 wanted us to remove it and have a biopsy done. We went ahead and had an operation to remove this ball under a general surgeon. No further tests were done or anything assumed.
The pathology report identified this growth as a 'benign pleomorphic adenoma'. This is an extremely rare tumor of the salivary gland usually found in women over the age of 40. No one advised us any further and we continued life as usual.
Now exactly 2 years on he is 12 years of age, there is another growth in exactly the same place except it is not 1 ball but a bunch of small pomegranates. It has been mentioned that the 1st surgeon 'did not do what was necessary'. We are in a more complicated situation now and my son has had MRI, CT, bloods etc. As you can imagine this has shocked us and now insist on a full investigation before surgery. After consulting with surgeons in the UK, KSA and Germany the results are inconclusive, no one knows what it is and whether it is truly and recurrance of the 1st rare tumor.
He shall undergo surgery to have his submandibular gland removed to which this tumor is attached and it seems as if the surgeon will need to make decisions at the time to what else needs to be done whilst in surgery.
We shortlisted many salivary gland tumor speacialitsts and our experiences (some very strange) and communications have led us to one in the UK who has at no cost and seems for the love of medicine has responded to us with requests of blood tests and ways forward.
My son will have this op next week, then we may know the nature of this tumor and the follow up programme.
The moral of our experience so far is never assume anything, never rush to surgery, always get more than 1 opinion and ask lots of questions.