| | Joined: Mar 2010 Posts: 21 Member | OP  Member
Joined: Mar 2010 Posts: 21 | Hi,
My name is Michele and since I have been lurking for about 2 days, I thought it was time to introduce myself.
I am 38 years old and I was diagnosed last week with Squamous cell carcinoma in my right lateral tongue. I've had a CT scan of my brain, face and neck-along with a chest x-ray and have an appt tomorrow with the ENT and surgeon to go over the results, discuss staging, etc. At this point all that I know, is that I am going to have a partial glossectomy, everything else is up in the air until tomorrow.
My heart bleeds for my parents because they are having a really hard time with this. I am their second child with cancer (my brother died of luekemia at 5 yrs old a long time ago) At least my mother will talk about it, but my father completely internalizes everything.
I also have Multiple Sclerosis (was diagnosed at 19) and kind of have an irreverant sense of humor (I decided a long time ago that making light of something serious doesn't make it less serious, it just makes it more entertaining and therefore easier for me to endure) One of my sisters (who does not have the same sense of humor as I do) was questioning why she and my other sister are so healthy and I have so many health issues/complications--I told her faulty manufacturing. She did not find it funny. I thought it was amusing.
I was on an MS treatment called Tysabri which was a monthly IV infusion, but the protocols are really strict for the Tysabri and now will not be allowed to have the infusions. I'm having a hard time with that, as it's been the only thing that even seemed to keep the MS remotely in check. But, I have to put that on the back burner for right now and just deal with what is right in front of me. Like they sang to the bumble in one of those christmas specials "just put one foot in front of the other..."
Sorry, this post is so long as you can see, I am a "talker"--yes, I realize, there is an irony somewhere that I got cancer of the tongue...
But, seriously--thank you so much for this site. It's been the most valuable resource I've been able to find online. I sent the link to my sisters and my husband (and would have to my parents, but they don't have internet) 
Be well all,
Michele [font:Comic Sans MS] [/font]
SCC, R Lateral tongue, T1N0M0, Diag: 3/15/10
38 yrs old at diag HPV Neg, Non Smoker Non Drinker
4/12/10 Partial Glossectomy, No Rads or Chemo
7/15/10 excision biopsy L mid posterior tongue - NEGATIVE
| | | | | Joined: May 2007 Posts: 622 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2007 Posts: 622 | Hello Michele and welcome to our little spot on the net.
Keep that sense of humor going, one of the things that got me through all of the treatments. You tumor is in the same place mine was. I wish I had found this site before my treatments started as you have.
Jump in, there are a lot of good helpful folks here.
Kevin
18 YEAR SURVIVOR
SCC Tongue (T3N0M0) diag 06/2006.
No evidence of disease 2010
Another PET 12-2014 pre-HBO, still N.E.D.
�Remember to look up at the stars and not down at your feet. It matters that you don't just give up.�
Stephen Hawking | | | | | Joined: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,219 | Michele,
Sorry that you are now adding cancer to your life, but you have come to the right place. I love your attitude and sense of humor. You never have to worry that your post is too long.
As you can see from my signature, I had lateral border SCC and needed no radiation or chemo. I will be celebrating my 5 year anniversary on 4/6. Depending on your staging and your doctor's protocol, you may need both in addition to the partial glossectomy.
Are you being treated at a comprehensive cancer center?
If you would like to email me with any questions or speak on the phone, you can contact me through email by clicking on my name and then profile.
Good luck.
Jerry
Retired Dentist, 59 years old at diagnosis. SCC of the left lateral border of the tongue (Stage I). Partial glossectomy and 30 nodes removed, 4/6/05. Nodes all clear. No chemo no radiation 18 year survivor.
"Whatever doesn't kill me, makes me stronger"
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | I like ytour sense of humor too. It has gotten me thru many a bad time and I just will never change my attitude but will continue to make people smile or at least try to. LOL Noone has gotten a crack cheek from smiling yet.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 | Michele, welcome to OCF. You have found the best place to get info and support for oral cancer. We will give you help by answering questions. In the beginning, its a whirlwind of appointments. Try to take someone with you and write down your questions with the answers. Some people tape record their doctor sessions so they dont forget anything. Make sure you eat everything you want now. Dont worry about calories, if you have radiation it may get difficult to keep weight on.
Best of luck with everything. Never lose that wonderful sense of humor!!!!
ChristineSCC 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  | | | | | Joined: Aug 2007 Posts: 1,301 "OCF Down Under" Patient Advocate (1000+ posts) | | "OCF Down Under" Patient Advocate (1000+ posts)
Joined: Aug 2007 Posts: 1,301 | A welcome from me as well Michelle. Read your quote too before you posted. Please let us know the results of your visit tomorrow.
History Leukoplakia bx 8/2006 SCC floor mouth T3N0M0- Verrucous Carcinoma.
14 hour 0p SCC-Right ND/excision/marginal mandibulectomy 9/2006, 4 teeth removed, flap from wrist, trach-ng 6 days- no chemo/rad.
6 ops and debulking (flap/tongue join) + bx's 2006-2012.
bx Jan 2012 Hyperkeratosis-Epithelial Dysplasia
24cm GIST tumour removed 8/2013. Indefinite Oral Chemo.
1/31/16 passed away peacefully surrounded by family
| | | | | Joined: Nov 2005 Posts: 1,128 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Nov 2005 Posts: 1,128 | A little bit of gallows humor, esp the dark and twisted kind <g>, will take you a long way!! We don't get to choose the path, but we do get to choose how we will walk it.
Any change of getting back on the Tysabri after the cancer is settled?
Age 67 1/2
Ventral Tongue SCC T2N0M0G1 10/05
Anterior Tongue SCC T2N0M0G2 6/08
Base of Tongue SCC T2N0M0G2 12/08
Three partial glossectomy (10/05,11/05,6/08), PEG, 37 XRT 66.6 Gy 1/06
Neck dissection, trach, PEG & forearm free flap (6/08)
Total glossectomy, trach, PEG & thigh free flap (12/08)
On August 21, 2010 at 9:20 am, Pete went off to play with the ratties in the sky.
| | | | | Joined: May 2008 Posts: 357 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: May 2008 Posts: 357 | Hi, Michele.
This is the best place you can be for information, reality checks and common ground.
Humor doesn't make your condition less serious, but it makes it easier to bear.
Hang in there and good luck!
Marlene
Marginal mandibulectomy 6/17/08 resulted in DX of Stage I SCC - gingiva (3 mm) right mandible, buccal side. Clear margins. Occasional social drinker. Smoked last cigarette in 1979. Clear pet: 12/08; 7/20/09. Yay!
| | | | | Joined: Sep 2008 Posts: 711 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Sep 2008 Posts: 711 | Welcome Michele, and as you can see, your sense of humor will be right at home here.
David R. 65 yr old male non-smoker, light drinker, stage 3 or 4, depending on which doc you ask, scc rt. tonsil, 2 nodes, 7 weeks radiation and chemo. No surgery. Teatment ended 3/20/08. PET scan 8/08 showed no cancer.
And now, as of oct, 2010, caregiver to wife, Linda, with breast cancer.
May, 2013, Linda diagnosed with stage 3 ovarian cancer. Enuf already.
| | | | | Joined: Jul 2006 Posts: 388 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jul 2006 Posts: 388 | Welcome Michele - Stick with this forum and these folks will get you thru it. Hang on to the sense of humor, it's vital and lastly, I loved your verse about the stained glass - I've never seen that one before and truly enjoyed the sentiment. Best of all treatment to you!
Husband: 3 SCC gum and cheek cancers 2002, 2005, 2006: surgery only. Scans clear after removal of small, well differentiated, non-invasive cancers. No radiation. 4th SCC lip diagnosed 4/13/07 - in situ, removed in biopsy. More lip removed 2/8/08 - dysplasia. 2 Biopsies 3/17/09 no cancer (lichenoids)
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