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Hello Everyone #200023
04-05-2020 06:17 PM
04-05-2020 06:17 PM
Joined: Apr 2020
Posts: 2
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moze1022 Offline OP
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moze1022  Offline OP
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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

Re: advice newcomers [Re: moze1022] #200024
04-06-2020 04:26 AM
04-06-2020 04:26 AM
Joined: Feb 2015
Posts: 92
Boston suburb
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tlc356 Offline
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tlc356  Offline
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Joined: Feb 2015
Posts: 92
Boston suburb
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

TLC356
Re: advice newcomers [Re: tlc356] #200025
04-06-2020 03:26 PM
04-06-2020 03:26 PM
Joined: Apr 2020
Posts: 2
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moze1022 Offline OP
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moze1022  Offline OP
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Joined: Apr 2020
Posts: 2
Thanks for the advice, I will keep all that in mind

Re: advice newcomers [Re: moze1022] #200032
04-09-2020 01:26 AM
04-09-2020 01:26 AM
Joined: Jan 2020
Posts: 19
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Micki Offline
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Micki  Offline
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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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