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| Joined: Apr 2020 Posts: 2 Member | OP Member Joined: Apr 2020 Posts: 2 | 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 | | | | Joined: Feb 2015 Posts: 134 Likes: 7 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Feb 2015 Posts: 134 Likes: 7 | 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.
SCC stage 1 Nov. '03, SCC stage 2 (clear mrg, no rad, no chemo) RND, Feb. '15 SCC stage 1, lower gum Mar '23, all lower gums and teeth removed
TLC356
| | | | Joined: Apr 2020 Posts: 2 Member | OP Member Joined: Apr 2020 Posts: 2 | Thanks for the advice, I will keep all that in mind | | | | Joined: Jan 2020 Posts: 19 Member | Member Joined: Jan 2020 Posts: 19 | 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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