| | 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)
| | | | | Joined: Jun 2009 Posts: 440 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jun 2009 Posts: 440 | Welcome Michele!
I love your sense of humor, brought a smile to my face! Keep us up to date on your appts!
Dx 3/27/09 @ 28 years old with High Grade MEC T4N2M0
Elizabeth, 33, mother of 3 girls (4,7, &8yrs old)
3 rds of chemo(Carbo/Taxol)
Rt Mandibulectomy, rt fibular flap,& rt ND with trach, picc,& g-tube.
30 rds of rads with weekly cisplatin
SCANS ALL CLEAR!
OCF Regional Coordinator of San Antonio Walk
| | | | | Joined: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Dec 2008 Posts: 1,004 | Hi Michele and welcome to OCF. I agree with you on having a sense of humor. You have to if you plan on getting through life. Well, you certainly found a great group of people to help you through this.
I know what you mean about feeling bad for your parents. I hate knowing how my family must feel...that is one of the hardest parts.
Suzanne
***********
T1 SCC on right side of tongue
Age 31...27 when diagnosed
4 partial glossectomies
No chemo or radiation
Biopsy on 2/2/10-Clear
Surgery needed again...no later than April 2011
Loving life and just became a mother on 11/25/10
It's not what we CAN'T do..it's what we CAN do:)
| | | | | Joined: Sep 2009 Posts: 701 Likes: 1 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Sep 2009 Posts: 701 Likes: 1 | Michele,
Ditto from me--I love you sense of humor and glad you found OCF. Count me in as one of you supporters.
Anita
Anita (68)
CG to husband, Clark, 79,
DX SCC 11/07, T4N0Mx, PEG 1/08, RAD, post rad infection 3/08,
HBOT 40 dives, ORN, Surg 11/09 mandibulectomy w/fibular graft.
Plastic Surg 4/10, 12/10, 3/11, 10/11, 4/12, 10/12. All PETS clear,
PEG out 1/11. 6/11 non union jaw fracture
Fractured jaw w/surgery 7/14
Aspiration pneumonia 7/21, 10/22
PEG 7/21
Botox injections
| | | | | Joined: Nov 2009 Posts: 396 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Nov 2009 Posts: 396 | welcome to the OCF! you will rely heavily on your sense of humor in the coming months. i love your quote...its beautiful!
Teresa
-----------
CG to ANDY. Nasopharyngeal Carcinoma (NPC)
T2N2cMxG4 stage 4. 43 @ dx 8/31/09
tx 9/21/09-11/06/09 cispatin/docetaxel/5-FU X3
PORT 9/9/09, PEG 12/07/09
35 IMRT-1/wk carbo 11/30/09-2/3/10
tx stopped due to complications
IMRT BOOST 3/08-3/12/10
PET 4/12/10 CLEAR!
PEG out 4/14/10
| | | | | Joined: Mar 2010 Posts: 21 Member | | OP Member
Joined: Mar 2010 Posts: 21 | Hi Everyone, Thank you for your warm and wonderful replies. I got some good news on Friday--The cancer is stage 1. I have an appt this coming Friday with the radiation oncologist to see if he recommends radiation, but I don't need chemo and right now they're thinking I'm just going to need the partial glossectomy. I'll keep you all posted. Jerry: It's funny you ask about the CCC because, I live about 20 minutes out of Boston and my nuero is in Boston and I'm one of the people that usually make a big deal about having renowned hospitals right in our backyard so it's ridiculous not to take advantage of them---However, as I've gotten older, I've learned to trust my intuition about people (and almost 20 years with a chronic illness has taught me a great deal about advocating for myself) and I just feel super comfortable with the energy of my surgeon--and the ENT (along with the fact that a close friend works in the local hospital in which they are based and they both have very good reputations) Pete: Unfortunatly, the protocols for the Tysabri are very strict. They fastracked it through FDA approval once and then the company voluntarily withdrew it due to some deaths--they re-released it, but under VERY strick guidelines and honestly, I think there are alot of unknowns regarding long term treatment with it. So, If anyone has a major health issue (other than MS) they won't allow them on the Tysabri again because, they don't know for sure, if they Tysabri caused it. For all we know--in 10 years, when they look at the reporting, they could see a trend of Oral cancer in individuals who have been on Tysabri over 3 years-- no one knows. I knew their were unknowns when I decided to do it--and honestly, it made such a difference in my quality of life with the MS--I would continue with the treatments if they would let me... Be well, Michele
Last edited by Michele71; 03-30-2010 12:26 PM.
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: Jan 2004 Posts: 1,116 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2004 Posts: 1,116 |
Diagnosed May 2002 with Stage IV tongue cancer, two lymph nodes positive. Surgery to remove 1/2 tongue, neck dissection, 35 radiation treatments. 11/2007, diagnosed with cancer of soft palate, surgery 12/14/07, jaw split. 3/24/10, cancer on tongue behind flap, need petscan, surgery scheduled 4/16/10
---update passed away 8-27-11---
| | | | | Joined: Jun 2009 Posts: 875 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jun 2009 Posts: 875 | Now that, Michelle, is the kind of posting that brings a big  Welcome, and keep us informed. julieann
Julieann Nov 2007 SCC on right tonsil following tonsillectomy. Was smoker, QUIT. (Stage IV T2 N2b) 7 weeks radiation one day/wk chemo (carboplatin and 5-FU). Allergic to Taxol; PEG in, lost 30 lbs. TX completed January 2008. PEG out mid- 2008. PET/CT 1/17/2011;2/3/12 NEGATIVE for cancer | | | | | Joined: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Dec 2008 Posts: 1,004 | That's great news Michele. I agree what you mean about the big hospitals...it's nice to have them if you need them but if you have a good relationship with your docs...that is more important in my eyes. Keep up posted...
Suzanne
***********
T1 SCC on right side of tongue
Age 31...27 when diagnosed
4 partial glossectomies
No chemo or radiation
Biopsy on 2/2/10-Clear
Surgery needed again...no later than April 2011
Loving life and just became a mother on 11/25/10
It's not what we CAN'T do..it's what we CAN do:)
| | | | | 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 | That is good news Michele. Look forward to seeing what the result of your visit on Friday brings...it can only be positive as it is Good Friday 
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: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Having faith in your Drs to me is a vital part of the armor we need for our fight. I had one I didn't think much of and he was from the biggest and best known Hospital I have been in. The team from the smallest Hospital, also a CCC, is the ones I have my trust and faith on. I am older than them but they treat me as if I was one of their kids. LOL I wish my "daddy" had that kind of bucks but I loved him anyway.
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
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