Share your story in our online journal space.
I have no idea where to start or to go.....and i am apologizing in advance for what will probably be a bit of a ramble
Biopsy 18 December followed by a pet scan and mri on 19th with an appointment at hospital today that saw my loved one and i along witn our son attending a ent clinic. I think i am either still processing what happened or am in shock with how this was managed...a little room where i counted 6 doctors and 2 nurses who proceeded to disclose the results and their recommendation.... no introductions to who was who and the role each played in this process.....a diagnosis of tongue cancer ensued followed by "we think you would make a suitable candidate for surgery" and that the team needed to know today whether to proceed with surgery so they could book it in....when asked whether it was in the lymph nodes as there is swelling in the neck...the team were not sure and that another mri was required ...subsequently 2 additional mri tests were undertaken...the whole process of learning about the diagnosis, undertaking more mri tests plus completing pre op questions took over 6 hours....my question is...is this a normal process? To require someone to make a decision the same day that they have been told that they have cancer seems out of line....and in my view appeared to be a way to steer a person to agreeing to the preferred recommendation, with out due consideration of what other options, if any, that may be available...in this case they seem to be pushing surgery to remove the tongue and jaw...and they made it sound so straightforward...so we will just take a part of your leg bone to reconstruct your jaw....i am interested to hear other viewpoints or experiences......is surgery the only option for tongue cancer? My gut is telling me to get a second opinion...surgery may be good from a doctor's point of view, but what about quality of life? We are required to return again Thursday to meet with another team....i think they mentioned something about a dietician and speech therapist and anaesthesist and to ask any questions we may have...overwhelmed
Hello Emma18,
I am unable and uncertain how to express words, everything must of been sudden and shocking at the same time - not the best combination. It sounds like the treating staff wanted or thought immediate action so they could start making arrangements and appointments. They wanted the best and probably went into action instead resulting in some lose of general socialites e.g. Introductions. But heck, a day to review all the new information and to absorb your options would of been ideal as well.
May I ask by any chance, how are things going now??
In terms of treatment, the general approach seems to be "cut, poison and kill" or "surgery, chemotherapy and radiation".
Unsure why they wanted to go so fast but I'm sure they had the best intentions - probably just really invested in of removing it while they still had a chance/it hadn't spread to other organs. The only thing I'd suggest always asking is "How will this affect my quality of life?" and "Is the purpose of this (whatever they're suggesting) to cure, control or manage?" as doctors will probably be focusing on how to save/cure you ASAP without really considering the side effects that it will have on you. Not due to a lack of humanity though! Just the desire to save lives.
Good luck - I hope things go well for you.