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Hello, I could use some advice please #200415
09-21-2020 04:00 PM
09-21-2020 04:00 PM
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Mrs. Karl Offline OP
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Mrs. Karl  Offline OP
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Joined: Sep 2020
Posts: 5
Hello,

I have had issues with "white patches" on my tongue for about 1 year. 3 doctors later and 6 months I went to well known cancer clinic in boston. Following a left partial glossectomy in July 2020 I was diagnosed with"squamous mucosa with acanthuses, parakeratosis, and mild to focally moderate dysplasia." In March I told doc it was growing, but they time they resected in July it was about 4 cm. The did not get clear margins and plan to go in with a CO2 laser to get the mild dysplasia at tip of tongue, I am 2 months post op and the left over lesions are growing and I now see other spots have formed. I have a follow up appointment Oct 19th. Doc said "mild dysplasia does extend to the tip of the tongue, however, I am not sure whether it can all be easily resected without resulting in a significant defect in her tongue." He is recommending observation till Oct.

My question is why are they moving so slowly? He asked me to take a picture of tongue and send it. These white grey patches are hard to catch with a camera. It feel like he doesn't believe me. If we know they are there, I told him they are growing and he can't resect them without "significant defect of tongue." What is he waiting for? Should I be worried? I am thinking of going to nyc for second opinion. Last time it took 6 months to get in, and in my opinion the lesions more than doubled in size. I don't want this to happen again, but it is like the doctor's office doesn't believe me. I of course am filled with anxiety.

This happened 15 years ago with lumps in my neck. 5 doctors later and 8 months later, I was diagnosed with thyroid cancer. Treated for a year, and been fine ever since. If I hadn't pushed, I would have been diagnosed so much later. I am having same fears with this tongue issue.

Thoughts? Any advice appreciated. Anyone have similar situation? Or am I filled with anxiety over nothing? I hope so and hope this is not a huge deal. The tongue surgery definitely was the hardest I experienced. My hearts go out to all of you dealing with this cancer.

Thanks in advance and sending good thoughts for all of you going through oral cancer currently.
Mrs. Karl

Re: Hello, I could use some advice please [Re: Mrs. Karl] #200418
09-22-2020 10:27 AM
09-22-2020 10:27 AM
Joined: Aug 2020
Posts: 19
Huntington Beach, CA
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Nels Online
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Nels  Online
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Joined: Aug 2020
Posts: 19
Huntington Beach, CA
Mrs Karl,

I am sorry to hear all this. Trust yourself on this. I suggest getting a second diagnosis and pushing for much quicker than 6 months from now. Take as good a pictures as you can (maybe have someone else take them? easier to focus in a mirror? try portrait mode?) to prove your case and also keep pushing your existing doctors.

Ultimately, if you upset them by pushing and you are wrong, you can simply apologize. But, if you are right, it is your health and the quicker the better.

Best of luck to you. Hang in there.

Nels


OC thriver, Tongue Stage IV, diag 3/12/20, surg 4/1/20, RT compltd 7/8/20
Re: Hello, I could use some advice please [Re: Nels] #200419
09-22-2020 11:11 AM
09-22-2020 11:11 AM
Joined: Sep 2020
Posts: 5
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Mrs. Karl Offline OP
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Mrs. Karl  Offline OP
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Joined: Sep 2020
Posts: 5
Thank you. Memorial Sloan Kettering is seeing me in NY for second opinion. I appreciate your support....some days I just want to ignore it.

Re: Hello, I could use some advice please [Re: Mrs. Karl] #200420
09-22-2020 11:34 AM
09-22-2020 11:34 AM
Joined: Aug 2020
Posts: 19
Huntington Beach, CA
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Nels Online
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Nels  Online
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Joined: Aug 2020
Posts: 19
Huntington Beach, CA
Ugh. I know that feeling. I had my sore on my tongue for about a year before I saw a doctor. Not a smoker, not a dipper, not a heavy drinker, healthy my whole life, eat well, runner, surfer, skier, blah, blah, blah. Never thought it could be cancer until my new dentist grabbed me by the shoulder and said "Nels, you have to promise me you will call your doctor tomorrow morning." It was the look in his eye and tone in his voice. Suddenly, I realized I was likely in for a real health challenge.

Boy do I wish I had even known what tongue cancer was. Never heard of it much less this website and forum. If I had sent a simple note on this forum after a month or two, I would have been way ahead. Good on you for reaching out and staying on top of all this.


OC thriver, Tongue Stage IV, diag 3/12/20, surg 4/1/20, RT compltd 7/8/20
Re: Hello, I could use some advice please [Re: Nels] #200421
09-22-2020 11:43 AM
09-22-2020 11:43 AM
Joined: Sep 2020
Posts: 5
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Mrs. Karl Offline OP
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Mrs. Karl  Offline OP
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Joined: Sep 2020
Posts: 5
Nels,
Sorry to hear your story but thank you for sharing. Reminds me to keep pushing. I spent most of the day on this.

My dentist was the one who took 2 second to make me get a biopsy. Primary care said my tongue was one of the healthier ones he has seen, oral surgeon told me it was related to HPV. It isn't and it kept growing. They all told me not to worry. Kept growing so I Called my doc who treated my thyroid cancer....he sent me to Onc surgeon. Now it "seems" to be an issue. Never smoked, I only drink wine for the most part, not heavy drinker, active, runner, water sports, hiking etc. I stopped all drinking but about 2 glasses a week at this point. Second opinion at MSK early next month. NYU said they could see me Oct 7th. Cross fingers.....would like to stay ahead of this.

I am sending good thoughts your way...... I hope you are doing well. So appreciative of you reaching out.
Mrs. Karl

Re: Hello, I could use some advice please [Re: Mrs. Karl] #200424
09-22-2020 01:15 PM
09-22-2020 01:15 PM
Joined: Aug 2020
Posts: 19
Huntington Beach, CA
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Nels Online
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Nels  Online
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Joined: Aug 2020
Posts: 19
Huntington Beach, CA
Thanks for sharing and thanks for the thoughts. I feel nearly 100%. Working full time and full exercise regime again. Only thing left is some foods that are still wonky.

Have you heard of the book "Anticancer"? Some really good research summarized and interesting thoughts on how to live cancer free.

Oct 7th is pretty fast! Let us know how it goes.

Nels


OC thriver, Tongue Stage IV, diag 3/12/20, surg 4/1/20, RT compltd 7/8/20
Re: Hello, I could use some advice please [Re: Nels] #200425
09-23-2020 04:02 AM
09-23-2020 04:02 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
It's good that you are getting a second opinion. I've sent you a message.


SCC stage 1 Nov. '03,
SCC stage 2 (clear mrg, no rad, no chemo) RND, Feb. '15

TLC356

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