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Joined: Feb 2007
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Hi Brenda- Good luck with your Drs. visit. I am thinking of you and hopingfor the best outcome possible. LOVE Kate


Tongue Cancer T2 N0 M0 /
Total Glossectomy Due to Location of Tumor

Finished all treatments May 25 2007
Surviving!!!
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Hi Brenda, Welcome and good luck. Keeping you in my thougts.

Wendy


Wendy
46yrs@ DX 9/16/09 T1N0 SCC of leftlat tongue, poorly differentiated.Partial glosectomy 10/01/09 & 10/16/09 & 11/10/09 60-70% tongue removed, Radical fff, 38 nodes-clear, no rads/chemo. 3 petscans-clear

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Update after the visit with the ENT doctor.

I still can't believe it but I did not have a biopsy today.

The doctor convinced me he does not believe I have cancer at least of the head/neck.

He said he could find no masses that were suspicious looking and my lymph nodes were normal. He ran the tube down my nose to look at my esophagis and he said although it was blood red he didn't see a mass or unusual swellling. He said I will do a biopsy but you tell me where since you don't have a mass. I don't think you need one and I'm pretty positive it would come back normal but if that will help you sleep tonight I will do it.
He said he thinks I have acid reflux which is kinda of a joke since I have only eaten soup and oatmeal in very small portions for two weeks. He could not explain my ear pain, numbness in mouth,no taste or reason for lump on tongue.
He said the lump was soft tissue normal color so not concerned about it, but it has changed the shape of my tongue and been there over a year.
I said I would wait two weeks and then seek a second opinion or call him back for a biopsy. I did ask if I had cancer in another areas what would be the chances of this being a metasis and he said that could happen but very rare.
So for now I will monitor my symptoms and wait and see. BTW I have taken photos three different times just in case I need them down the road.
I'm not sure if I'm being overly paranoid. I felt the doctor was honest, caring and kind.

Thanks for everyone that posted as it really helped me a lot. I was in a total panic. I'm still worried but feel better.
Did anyone here have cancer and no visible hard mass?

The story does get a little more involved which I may go into on another post after I gather my facts .

I'm very grateful that this place is here for support and information. The courage of the people and what they have had to face leaves me in awe.

Brenda smile

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You can always get another opinion. Not saying our circumstances are similar but I ended up going to 4 different docs before one took a FNA and ended up getting 5 opinions before I allowed someone to treat me.


David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
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Hi David
Sorry this has been such a difficult journey for you.

I'm not sure if this is fate or someone trying to tell me something but my daughter called last night and said my granddaughter was doing a school project and needed a list of three generations and all their illnesses. Strange timeing!

It is a long sad story but I haven't seen or heard from my father since I was four and found out he passed away on his 62nd birthday the year before I found the info on the internet. I was able to obtain his death certificate.
For some reason I had thought he died of a heart attack but today looking at the certificate it says he died of throat and lung cancer. Of course I'm sure he was a smoker and lung and throat cancer are common. The thing is my daughter also had cancer of the thyroid in her 30's.

btw my fathers name was david!

I just find it a strange coincidence this was brought to my attention the day after my appt. with the ent.
Wonder if I'm reading too much into this.

I'm having two more tests next week so maybe I will know more soon. The problem is I have no regular doctor. I go to a free clinc and they work with doctors that reduce thier fees but whenever I go to the clinic I see someone new and usually nurse practioners. I'm very happy and grateful to be getting the care I'm getting but it does make me anxious not having someone putting the pieces together(A primary).

Lastly just to make it all more puzzling there is a possibility I have NF1. The neourolgist I saw several years ago for severe migranges was hesitant to dx without three onfirmed findings. I only have two that were found.
The common cafe au lait brith marks and scoliosis.
Still looking at at info on this sight and others there are soft sarcomas especially with NF1 and I wonder if all ent would be able to recognize cancer from a rare disease that does sometimes present orally.

It is a lot for my little pea brain to take in! confused




Thanks for your help!!

Brenda

wendys #124146 11-04-2010 11:05 AM
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Thank you Wendy

Good nes I guess but still not convinced. Will post as I continue to search for answers. confused

Brenda

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