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#201806 03-29-2023 11:41 AM
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I am a newly diagnosed patient. About a month ago the dental hygienist discovered a white spot on the bottom of my tongue. They had me return in two weeks and when it had not yet healed referred me to an oral surgeon who biopsied the lesion. He lest a little bit of the margin in case it was cancer so that anyone he referred me to would know where it was.

One week later (Monday) I got the news. It is a well differentiated squamous cell carcinoma that is one mm thick. They have referred me to a head and neck surgeon that I will see at Swedish Medical Center in Seattle in about 3 hours.

All of this is really overwhelming me. I am wondering if anybody has experience with Swedish or is there a better facility in western Washington?

What kind of tests can I expect ? How worried should I be ?

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Hi..wondering how you made out at your appointment? If I recall correctly, I had the biopsy and a CT scan and blood work prior to surgery. Everything happened quickly.
It all is very scarey, but you can do it. Keep us posted! Praying for you.

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The surgeon did an oral exam. He said the spot was extremely small and that this was caught quickly. He said the depth and differentiation is such that there needs to be no scans. I am scheduled for surgery on April 11. It will be general anesthesia and that he will remove small sections an immediately send them to pathology. This will continue until the pathologist sees no other cancer cells.

He says that it will be painful so they will prescribe narcotic pain relievers and that it will be about 1 month total recovery. It should not affect my taste or eating long term.

Should I request that a scan be ordered ? He kept emphasizing that the cancer was caught very early.

Thank you for any support and most especially prayers. I am so afraid.

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Dear Another Journey,

Welcome to OCF. Glad you reached out. Tons of wonderful people here that want to help.

The good news is you caught this very early. Oral cancer is much easier to treat when caught early. You are treatable and now also aware so you will be able to stay on top of this. Your dentist and medical team did all the right things up front quickly.

Cancer is a scary, fickle beast but they know how to attack it.

Mine was caught late (stage 4) so I went through major surgery, radiation, and many months of recovery three years ago. I have been back to full bore life for over 2 years. It was a hard rode but I am better for it. I learned to be more grateful for every day and found a faith I never could before.

You can do this. Keep asking lots of questions of your medical team. I found information helped me deal with it. I recommend a book called "Anticancer". It is packed with all kinds of details and research, data, etc.

Stay safe and keep the faith. Keep us up to date and sending more prayers.

Nels


OC thriver, Tongue Stage IV, diag 3/12/20, surg 4/1/20, RT compltd 7/8/20
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Thank you so much for your reply. I am scheduled for the surgery on April 11. My worst concern at this point is that I will wake up from the surgery and they will have removed most of my tongue. The surgery paperwork I have been provided indicated that I am undergoing a partial glasectomy. Details are that it is less than half the tongue. The surgeon explained that even if they remove a cubic mm it is still called that. Is there any input anyone can provide on this ?

I am also very concerned that the surgeon has indicated that scans are not needed. I hear this from him and others. I keep hearing that this is an early diagnosis and that is good news.

And of course I am hyper vigilant about anything on my tongue now. I think I bit my tongue yesterday when I was eating and of course now I have a little pain. In my mind the cancer has spread. This is how worried I am.

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Hello another journey,your cancer was caught super early so don't worry mine spread to 2 lymph nodes and 18 nodes total were removed 3 years ago I am here doing fine after neck dissection radiation and chemo so don't worry your journey will be easy compared to lot of us here read as many posts as you can Goodluck.

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It is quite scary when you read the details and then suddenly it seems like the scope could be much broader than expected. They took half my tongue and my speech is now clear and I can manipulate foods fairly well again. I do have a small lisp and it did take months to recover to this point. My surgery prep included knowing they were removing about half my tongue, rebuilding it with skin and artery from my left forearm, performing a tracheotomy, skin grafts, feeding tube, etc. The medical team made it well known what they were planning to do days in advance. From what you described above, I don't think you are anywhere near this level of surgery or recovery.

As for scans, you may want to get a second opinion on that. Not much risk in a scan just some cost and time. But, I really have no knowledge of the value of a scan for early detection.

Another thought, I was lucky enough to find a few people that had recently gone thru similar surgery. I spoke with them so I could ask all kinds of questions. It really helped. The medical team was able to connect us with each other. Maybe they can connect you with someone that had a similar diagnosis. I would also be happy to speak with you live even though our procedures sound quite different.

April 11 - you got this. Keep us up to date.

Best,
Nels


OC thriver, Tongue Stage IV, diag 3/12/20, surg 4/1/20, RT compltd 7/8/20
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Thank you for the suggestions. I have so much going through my head right now. I have been doing a lot of reading on this board and I realize that my cancer was caught early as far as we can tell at this point.

One thing that puzzles me is that cancer treatment has no equivalent of a primary care physician. It seems that you go to a specialist based on the type and body area affected. It is just so strange. For tongue cancer it seems surgery is the first step. Then you are referred to radiation or chemo if necessary. Is this how it works ? Do I rely on this head and neck surgeon to refer as needed ?

I want all the tests possible yet at the same time I’m afraid to have a bunch of tests for great of what else may be found. I want to know but I don’t want to know.

For those of you who have done this , how did you navigate all of the steps ? Did you rely on the surgeon or a social worker or your primary care physician ?

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I went to ent who did biopsy and refered me to surgeon after more scan to make sure they are getting all cancer while they are doing this so more tests and scans are normal and some people need chemo and radiation some don't.

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Please don't wait do these tests fast and surgery these cancers are aggressive do it asap

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