Hi All!
I am looking for peers to share the experience and the survival rate as I was told this is a rare cancer.
I tried looking for info online but most are related to Saliva Gland Cancer.
Thank you in advance!
PonyWai
Hi PonyWai, welcome to the group. I can't help with your question unfortunately, however what I would say is, looking things up on Google can be very stressful and worrying, it has a lot of out of date, misleading and much of it is untrue information. Hopefully someone will post who can help you with the information you are looking for.
Ray
Hi PonyWai,
I was diagnosed with primary 'Submandibular gland Adenocarcinoma' with secondary brain metastases back in August/Sept 2022. Research suggests brain mets from submandibular glad is rare. In fact, a member of staff doing a biopsy of my neck/jaw lumps told me he had been doing this job for 10 years and had never heard of or read research of submandibular going to brain before.
In September 2024, I was diagnosed with bone mets.
Echoing what Old biker said in his reply, online info can be very misleading.
Something my consultant said to me when I got diagnosed in 2022 has stayed with me. I'm a healthcare student so I'm interested in looking at research on my condition. Not a great idea but when I started reeling stats off to him, he said, 'Ben, I could give you 'an average based on lots of cancer research but it doesn't apply to you.' I interpreted a lot of the info online as negative.
I'm 51 now. Never had any pain, weight loss, loss of appetite, night sweats, seizures etc prior to treatment, just 2 small lumps under my jawline. Never been in any pain while having treatment either.
Not sure what you are interested in but I'm here if you want/need to reach out.
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