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Joined: May 2006
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"Above & Beyond" Member (500+ posts)
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"Above & Beyond" Member (500+ posts)

Joined: May 2006
Posts: 720
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I also am in the DC area, and Mike and I began posting here around the same time as he and my husband were diagnosed within weeks of one another (and saw one of the same doctors in northern Virginia). After the excisional biopsy that totally removed the leukoplakia (where it was identified as SCC in situ), my husband saw a cancer specialist at Hopkins who said no further treatment was necessary at that time. Had my husband needed radiation, he would have gone through a similar decision process as Mike, so I kept his blog tucked away in my mind.


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: Jun 2012
Posts: 31
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Joined: Jun 2012
Posts: 31
Hi, Glocita:

I'm new to the group and it looks like many have offered their words of support and encouragement; but I wanted to do the same. Your story sounds very similar to mine. I never smoked in my life, social drinker, HPV- but ended up with oral cancer on my tongue. I had about 25% of the tongue removed, but I (and everyone else) was amazed at how quickly most of it grew back. I still have a little divot in the tongue, and can't whistle much at all; but otherwise all is well. I look forward to getting a lot of good information on this forum, and asking for advice, and possibly sharing advice when I can.


Tim D., 43, married (Maurine), San Antonio, TX. Two-time OC survivor, first diagnosis May 2010 - partial glossectomy + neck dissection (17 nodes), recurrence Jan. 2011 - chemo + 2nd neck dissection (18 nodes) + radiation, completed treatments 4/28/11, PET/CT 12/23/11 - clear, scans 6/29/12 - clear
Joined: May 2012
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glocita Offline OP
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Thanks Tim! Glad to meet you! Yes, I had about 25% of my tongue removed as well. I still am not talking normal...but I think I am still healing. It is exactly 1 month since my surgery and this morning a stitch from my tongue came out. I didn't even know there were any left!

So happy to hear that you are doing well! You and all the others who have gone through this give me so much hope and courage!

The most random thing of me being diagnosed is that I am wayyyy more positive about everything than I normally would be. But I like it - for the first time in a long time I feel like my mind is healthy and after all my treatments are finished I know my body will be too!

Have you all heard about one of my newest idols, Zach Lederer? Im a Terp alum and he has become such a huge inspiration to me!
-Gloria


T2N0M0
26 at diagnosis. Non smoker, social drinker, HPV -
Surgery May 15, 2012: Left Partial Gloss + 48 nodes removed, not 1 cancerous! Perineural Nerve Invasion. IMRT x34. Staying positive!
Joined: Dec 2010
Posts: 5,260
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"OCF Canuck"
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"OCF Canuck"
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Hey Tim... Welome.. Hope you're Back on your feet after treatment it can take a while but you will get there.


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: Jun 2012
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Hi Gloria:

The first week or two after the glossectomy was not so fun - pain and couldn't eat anything solid. Most of the tongue grew back within the first 6-8 weeks. It still has a numb feeling sometimes, but otherwise isn't so bad.

It seems like your attitude is great, and that will make a big difference. I wish I knew about this forum the two times I had to deal with this....it would have made things easier. But I'm still glad to be on the forum because there's always things to discuss and learn.

I hadn't really heard much of Zach....I think I saw something on the evening network news one day as I was doing something else but didn't give it my full attention. I did look up some information on him and it does sound very inspirational.

Have a great day!


Tim D., 43, married (Maurine), San Antonio, TX. Two-time OC survivor, first diagnosis May 2010 - partial glossectomy + neck dissection (17 nodes), recurrence Jan. 2011 - chemo + 2nd neck dissection (18 nodes) + radiation, completed treatments 4/28/11, PET/CT 12/23/11 - clear, scans 6/29/12 - clear
Joined: Jun 2012
Posts: 31
Contributing Member (25+ posts)
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Posts: 31
Hi Gloria:

It looks like you haven't been on here in awhile, so I was checking to see how your treatments are going. Or have you finished?


Tim D., 43, married (Maurine), San Antonio, TX. Two-time OC survivor, first diagnosis May 2010 - partial glossectomy + neck dissection (17 nodes), recurrence Jan. 2011 - chemo + 2nd neck dissection (18 nodes) + radiation, completed treatments 4/28/11, PET/CT 12/23/11 - clear, scans 6/29/12 - clear
Joined: May 2012
Posts: 19
glocita Offline OP
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Hi Tim!

Sorry, I have not logged on this website in a while. Treatments are finished. This week will be my 6 month mark post surgery.

How is everyone doing??


T2N0M0
26 at diagnosis. Non smoker, social drinker, HPV -
Surgery May 15, 2012: Left Partial Gloss + 48 nodes removed, not 1 cancerous! Perineural Nerve Invasion. IMRT x34. Staying positive!
Joined: Jun 2007
Posts: 10,507
Likes: 7
Administrator, Director of Patient Support Services
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Hope you are doing ok with your recovery, Gloria!


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
Joined: May 2012
Posts: 19
glocita Offline OP
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Posts: 19
Thanks Christine!

I did make it through my treatments - hurray! I actually finished radiation 2 days after my 27th birthday. It was painful and hard, but still doable smile.

Now I think the hardest part is trying not to worry about a recurrance. Everytime I get a sore in my mouth I want to cry frown. But they eventually go away.

Can you all eat spicy food - or sugar? They both burn my mouth so horribly bad (especially chocolate).


T2N0M0
26 at diagnosis. Non smoker, social drinker, HPV -
Surgery May 15, 2012: Left Partial Gloss + 48 nodes removed, not 1 cancerous! Perineural Nerve Invasion. IMRT x34. Staying positive!
Joined: Jun 2007
Posts: 10,507
Likes: 7
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
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Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,507
Likes: 7
Chocolate is a difficult one that many people really struggle with. It didnt bother me. I drank yoo-hoo all thru my treatments and afterwards drank chocolate milk to sooth my mouth when I ate anything spicy. Gosh, I remember eating canned soup and thinking it was pure salt. To me everything tasted like it was burnt and very salty for about 3 months after rads. It takes a long time to recover. Ive learned it takes a month of recovery for every week you have had radiation. It really can take up to a full 2 years for a complete recovery. Hang in there, things really will still improve for you.


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
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