Looking for peers who diagnosed with Saliva Duct Carcinoma

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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however what I would say is, looking things up on Google can be very stressful and worrying, it has a lot of out of date, misleading and much of it is untrue information.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. 

  • Thank you so much Ray!

  • Hi there,

    Thank you so much to take the time to respond.