Posted By: moze1022 Hello Everyone - 04-06-2020 02:17 AM
Recently diagnosed from biosy base of tongue sqcc p-16 positive. Initial CT scan Shows spread to 2 lymph nodes. Will be having full PET scan tomorrow to determine spread, meet with Oncologist Surgeon on next day to discuss results. I am staying positive, but having this happen during a pandemic is unnerving. I am looking for tips on what to expect next. There is so much information on the Internet, it is like trying to drink from a fire hose. I usually am pretty good at sorting through the bad info, using only reputable data. I guess I am looking for people with shared experience, thanks to open forums like this. Please advise, Thank You
Posted By: tlc356 Re: advice newcomers - 04-06-2020 12:26 PM
I've posted this in the past, I hope it helps.

Based on my experience having had two operations for oral cancer since 2003, I would like to suggest four thoughts for newcomers.

1) Since oral cancer hits only about 1% of the population, seek professional care from a medical center that specializes in cancer and has oral cancer specialists on staff.

2) Don’t be afraid to travel extra hours to such a center-your disease can be life threatening.

3) Follow-on care may be done at a location closer to your home that the cancer center works with.

4) Don’t wait to get help, and don’t second guess expert opinion but do get a second professional opinion if concerned.

In your case they will probably do an RND, (radical neck dissection). Be prepared for a scar across your neck.
Posted By: moze1022 Re: advice newcomers - 04-06-2020 11:26 PM
Thanks for the advice, I will keep all that in mind
Posted By: Micki Re: advice newcomers - 04-09-2020 09:26 AM
All great advice. Keep in mind this is a marathon not a sprint. Ask your healthcare team every question you can think of and be sure you have someone with you to also hear the answers. You can’t possibly remember everything plus this is scary as hell! Take care yourself especially when you just feel lousy.

Micki
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