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Joined: Nov 2009
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I had a neck dissection as well, and didn't think that it was nearly as bad as the radiation and chemo. I also had a good part of my tongue removed. Right now, my teeth are my most annoying problems, and I do have some eating issues. And, yes, I do lisp a bit. You have come to the right place for support. These people here are amazing!


Female, nonsmoker, 70, diag. 5/09 after tongue biopsy: stage IV. Left hemi-gloss. and left selec. neck disec. 30 lymph nodes removed May 20. Over 7 weeks daily rads. with three chemo. PEG removed 12/4/09 Am eating mostly soft foods. Back to work 11/09 Retired 4/1/11. 7 clear scans! Port out 9/11. 2/13. It's back: base of tongue, very invasive
surgery involving lifestyle changes. 2/14: Now speaking w/Passey-Muir valve. Considering a swallow study. Grateful to be alive.
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"OCF Canuck"
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How long ago? It's been a month for me... Everyday it gets better - I still have trouble with d, t, sh... Give it time - I know it's embarrassing - people who know me understand - those that don't know me I apologize and tell them I just had surgery. They are always ok with it. It takes time. I hate being incapacitated but this is a journey - I know it will get better. My surgeon told me if it needs a little tweaking ( de bulking ) they would do it. But they did an amazing job. Seriously a lot the people here have had this surgery and a few months out their speech is almost normal. My dr. Told me that my speech will be fine - I may only have a small lisp when I'm tired. The tip of my tongue is still numb as well but it's tingly too... That means it's healing. Eat a little more slowly - watch the tip for a while. Truly give it a little time... And take care.


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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[quote=Cheryld]How long ago? It's been a month for me... The tip of my tongue is still numb as well but it's tingly too... That means it's healing. Eat a little more slowly - watch the tip for a while. Truly give it a little time... And take care. [/quote]

My surgery was 1/26/11, so about a week before yours....we'll have to compare notes! The tip of my tongue is tingly too(almost a metallic tingle) so I hope that means it will get better eventually. I've always been terribly self concious (I also have vitiligo), and this just makes it that much worse.

It does feel comforting to find a place where my fears are understood, and not judged....and be treated with so much compassion.

Thank you all so much!
Kellijojo

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"OCF Canuck"
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"OCF Canuck"
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It makes sense that you sound mumbly - everybody heals at different rates but according to my daughter I sound like I have A lollipop in my mouth but I woke up a few days ago and sounded better - it takes time. I understand being self conscious - I have the opposite of you - I have melasma - it's been a pain in the arse for me - moreso because I do film work as well. Try auditioning when you mumble - so I get embarrassing believe me. Plus I am forever having to worry about makeup to cover my darkened areas... Everything shows up on camera. For now I told my agent I need time off but i would like to get back to it at some point.
Please do get your diagnostic tests -- just to be on the safe side... Take care and yes lets compare - you can pm me or email me anytime.
And yes this is an amazing place the people here are fantastic.

Last edited by Cheryld; 03-05-2011 08:35 PM.

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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I am so terribly sorry for what you are going through! As the others have said, though, this is a wonderful place for support.

Your situation sounds a little similar to mine in that you had several benign plaques removed before the SCC was diagnosed. My total cancer area (after biopsy and two excisions) is less than 2 cm and my doctor told me this is a good place to be. He said that SCC is usually grouped at 0-2 cm, 2-4 cm, 4-6 cm, etc. The smaller the lesion the more likely that you don't have spreading elsewhere. This is why he didn't recommend a neck dissection, chemo or radiation for me. But even if I have a recurrance and eventually wind up having to have these I know from the example of all the fine folks here that it can be handled.

My oncologist ordered a PET scan after initial diagnosis. This measures the metabilization of sugar within the tissue and is an excellent indicator of lymph node involvement.I now know that I don't presently have metastasis to the lymph nodes or anywhere else. I would follow ChristineB's recommendation and get a scan once the inflammation has calmed down.

The speech too will improve. My impairment is worse than after the excision in October but its improving daily. Sometimes I remind myself of Sylvester the cat with my schloppy ssh's and I couldn't roll an r if my life depended on it. But today I learned that if I put a t in front of the r I can begin to coax the tongue into action. My biggest chuckle came with the suggestion that I put my tongue into my cheek and push. Are you serious? I can just barely get past my teeth let alone reach my cheek. But its a goal and one I keep reaching for. :-)

Life has handed you an awful lot in the last year and I'm sure you are feeling terribly overwhelmed. You sound strong to me however and I'm sure that once you sit down and take a deep breath and allow yourself to feel all the caring and support coming to you from these forums that you will find the strength to fight.

Wishing you all the best in the days ahead!!


Catherine, SCC floor of mouth DX 2010,unclear margins, PET scan clear, no chemo or rad,biopsy in 9/2010, 2nd excision 10/2010 didn't get all carcinoma in situ; partial gloss & excis. right floor 2/2/2011 margins clear. Part.gloss-10/5/2011 sev dys clean marg. HPV neg. Don't smoke or drink. SCC floor of mouth left side 4/2016. Dysp excis. rt palate 7/2017 Part gloss sev dys lat marg 2/2019 Part gloss free flap rt neck disc 5/2020 Part gloss bilat neck disc 7/2020 33 rad 3 cis.
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