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Joined: Jan 2014
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WendyT Offline OP
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Thanks! I do have some lidocaine that was prescribed to me back in Dec. what happened is that about 1 1/2 days after the first surgery, I got to the point where I couldn't even swallow water. There was so much soreness and swelling. At the ER they gave me a lot of things through an IV, which certainly helped. Then they prescribed the Lidocaine and also Steroids. I took the steroids for a while, but then realized that I couldn't sleep because of them. At that point I didn't need them any more, so I was able to gradually discontinue taking them.

My throat isn't as sore now, but I am glad I have the Lidocaine in case it gets worse. I have had a really bad headache that has lasted for about a day and a half. I keep thinking it must be because I am not able to eat much, just Carnation breakfast shakes and juice. I tried to eat some soup yesterday, but found that kind of difficult. I really feel sad to think about how difficult eating must be for many of you, and I mean on a daily basis. I realize that could happen to me too.

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WendyT Offline OP
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Well, I got the call a little while ago. The biopsy results are (after my second surgery) that it is not cancerous, not even dysplasia!!!!! I am really happy, but am in shock. I was fearing the worst, maybe because the doctor was suspicious, and wanted to surgically remove tissue both times rather than just doing biopsies. After reading about some of your experiences, I still don't quite understand that.

In a way, I feel kind of funny for even having registered and posted messages here.... but I was scared, and was trying to prepare myself for the worst. That's just how I am. I feel like I learned a lot, which is good because although I was lucky this time, I feel that I am still at risk.

Thank you all for the information and support! Thanks especially to Cheryl. I will pray for all of you, including a man I just read about who was just diagnosed. Best of luck to you all!

Joined: Aug 2011
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ngk Offline
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So very happy to read your post! Take care.


Nancy (53 at dx)
Metastatic SCC. Stage III. HPV positive with occult primary. N1, no ecs
7/1/11 - L-Selective neck dissection. Tonsillectomy. All clean. No rad, no chemo.
5/29/13 - Found primary
7/3/13 - TORS
7/8/13 - Emergency Surgery/Blood vessel burst in throat
8/9/13 - Peg in
9/3/13 - Radiation starts 30 IMRT, 60gy BOT, 56gy both sides of neck
10/14/13 - Radiation ended!
11/12/13 - PEG out!
Joined: Dec 2010
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"OCF Canuck"
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"OCF Canuck"
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Best of luck - do keep a close eye on the area and relax and heal now. smile hugs


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
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WendyT Offline OP
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An update about me....Well, it has been nearly 5 months since my last surgery. I last saw the ENT in April. I thought everything was A okay. He felt the place where the incision had been, and said it felt harder than it should. He said that it may just be "scar tissue", but that he wanted to see me back again in July. I explained that we're moving out of state in Late June. He said "I DEFINITELY want to see you again before you leave". Meanwhile, although I have mostly felt okay, I have noticed that hard spot - although it's really not large. The strange thing is that the same side of my tongue feels kinda numb, and has for some time. I have read that this could be a bad sign. I am seeing the ENT on 6-9. I don't know what I'll do if he says I need surgery again. I mean, that's all I need is to have a Medical crisis right in the middle of moving. My husband and 10 and 9 yr. old kids are moving from Virginia to the St. Louis area (Illinois). He is in the Coast Guard, so we move about every 4-5 years. I am worried. I really hope he (the doctor) thinks it can wait. I know that not getting quick medical attention for something like this can be a huge mistake. Does anyone know of a good ENT / Oral cancer specialist (just in case) in the St. Louis area? Thanks.

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"OCF Canuck"
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If there is any thought it could be cancer you absolutely do not want to wait - best of luck..


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
Joined: May 2006
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"Above & Beyond" Member (500+ posts)
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[quote]Does anyone know of a good ENT / Oral cancer specialist (just in case) in the St. Louis area? [/quote]
The Siteman Cancer Center at Barnes-Jewish Hospital/Washington University School of Medicine in St. Louis is a member of the National Comprehensive Cancer Network, an alliance of 25 top U.S. institutions that work together to create and annually update the state-of-the-art treatment protocols.


Leslie

April 2006: Husband dx by dentist with leukoplakia on tongue. Oral surgeon's biopsy 4/28/06: Moderate dysplasia; pathology report warned of possible "skip effect." ENT's excisional biopsy (got it all) 5/31/06: SCC in situ/small bit superficially invasive. Early detection saves lives.
Joined: Sep 2006
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Do keep us posted.


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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