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Eva Grayzel #152195 07-18-2012 08:50 AM
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hi Eva,

What stage of cancer did you have? His tongue has gotten more white since his first biop. We will find out of Monday.

Heather Griffin #152318 07-22-2012 07:34 PM
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I had sores on my tongue on and off for years. By the time I was diagnosed, I had been in pain for many months. During my first visit with the oncologist, she suggested that she would do the PET scan, however if there was lung involvement, she probably would not do surgery on my tongue. I was diagnosed with Stage IV SCC of the tongue in December, 2011. I had surgery January 9, 2012 and finished up with radiation and chemo in April. Had my first post-op PET scan mid-July and it is completely clear. At this point, I have issues with heavy phlem, speech and difficulty swallowing (I had 70% of my tongue removed)but I feel great! I only weigh 114 pounds at 5'5", but I am traveling and working and even had my husband and I flew our very active 5 year old granddaughter to Florida for a week long visit. After that we all flew to MD for a 2 week visit with our families (watched my granddaughter the whole time while our daughter worked. Then flew out to Vegas for 5 days and back to FL. I admit, I slept the next 4 days, but then right back to work. I would have never thought that possible 6 Months ago. Hang in there.

Last edited by CarolAnn; 07-22-2012 07:36 PM. Reason: Forgot diagnosis
Heather Griffin #152336 07-23-2012 02:22 PM
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Hi all,

Good news, my hubbys has been diagnosed with mild displasia, in his tongue. I could not go with him as we have kids and I was busy with them. The Dr. told him that he has a 10% chance of ever getting cancer. Does this sound correct? This is a form of "pre cancer", correct? She also told him he has to go every 6 months to see her. I am sure that my husband tells me the majority of info. but not all. Does this make sense, all this info.?

Heather Griffin #152340 07-23-2012 04:08 PM
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Heather --

I can't speak to the likelihood-of-getting-cancer percentage you were given, but yes, dysplasia basically means that the cells are not normal but also not cancerous. Most dysplasia does not turn to cancer; in my husband's case, it did, but it was caught as early as it could be and still be called "cancer." Early detection DOES save lives.

So it's a very good idea for your husband to get regular checks -- and to continue getting them over the years.

I'm glad you found OCF -- the best place around for information and support. In addition to what you see on the message boards, you can learn a lot by looking through the pages on the main OCF site.


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.
Heather Griffin #152894 08-05-2012 04:51 AM
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Hi. I first saw two drs. In Mississauga at trillium. Both sucked. If he continues to have issues go back every 6 mos (mine was clueless, and didn't suggest follow up check ups or anything), and if at some point he does get a positive dx (I did after 2 biopsies) tell him to get the heck out of trillium and down to princess Margaret ASAP. I know people within trillium and there's a lot of competition and back biting, particularly with the oncologists and they aren't truly specialized. Someone I know who actually works there said if she ever got cancer she'd be treated in TO. Take care and good 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
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