| Joined: Mar 2014 Posts: 34 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Mar 2014 Posts: 34 | Hello everyone. Well, I am a new member to this site and to this board. I hope that hearing from others who have gone through similar situations will make me understand better what is happening.
Thursday of last week I noticed that a white patch/sore on my tongue that I had had since August of 2013 was getting worse. I had it looked at by a doctor who then referred me to an ENT back in September and he gave me Prednisone and some type of antibiotic mouthwash to use. Two weeks later I had a follow up and it had mostly healed except for a small white patch that had remained. He told me to get it removed but I figured it was nothing and went on my way. When it began hurting again I finally did some research online, scared myself, and made an emergency next day appointment and had it biopsied. While waiting for my results, I read an infinite amount of posts on both this board and in other locations on the Internet mostly trying to find out how long a biopsied tongue hurts for. I didn't see anyone else complain about it too much, but it was not fun. Anyway, I finally got my biopsy results back today and turns out that I do have Stage 1 squamous cell carcinoma of the tongue.
I am 25 years old, can count the amount of times I have ever smoked on one hand and only drink socially. I am 90% positive that I am HPV16 negative but they sent it off today for additional testing. Anyway, I am scared. I had a CT scan done today too (which as I was sitting here typing luckily came back clear) and I have a doctors appointment tomorrow morning for a second opinion. They said that they have to do another surgery to check the tissue surrounding the cells to make sure they are clear. I know that many here have faced much worse and I am truly sorry for what you are going through. My heart goes out to you all. I am so scared though. I don't do well with surgeries and I am prone to anxiety and I just want to tell someone who will understand.
If you made it this far in reading my introduction, I thank you.
3/2014: 25, no risk factors (nonsmoker, rare drinker, HPV negative) SCC right lateral tongue, T1N0M0 - well-differentiated; surgery - removal of tumor, salivary gland + neck dissection 11/2017 - ovarian torsion 12/2018 - basal cell skin cancer
| | | | Joined: Apr 2013 Posts: 319 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Apr 2013 Posts: 319 | Hi Kfisher and welcome to our family!
I understand your fear, it's quite natual, however it should be relatively easy to control if you try.
First, let's start with the worst of the news, you have cancer. Fortunately, you caught it at stage 1 and are young and resilient. This means that your case should be fairly easy to treat, and almost surely means that you will come through this with flying colors. Don't spend any time trying to find descriptions of the treatments, you will learn all that when the time is at hand, and that's plenty soon enough.
The best part is that stage 1 is usually quite curable. Focus on this fact for the present, you are among the group with the highest probability for a complete cure! Not all of us are in that group, I am not.
So you've got a curable condition. Now the treatments are not going to be pleasant, but whatever they might be or might not be, they will have a definite start, and a definite end; and once behind you, they will only be a memory!
Fear of the unknown is what's plaguing you at the moment, and that fear is always worse than the reality. If you click on the link at the top of my signature block and read my own intro, you will see that I'm not exaggerating when I say that.
I'll quit now but others will be along to add a lot of other useful information for you!
Again, Welcome to the family!
Bart
My intro: http://oralcancersupport.org/forums/ubbt...3644#Post16364409/09 - Dx OC Stg IV 10/09 - Chemo/3 Cisplatin, 40 rad 11/09 - PET CLEAN 07/11 - Dx Stage IV C. (Liver) 06/12 - PET CLEAN 09/12 - PET Dist Met (Liver) 04/13 - PET CLEAN 06/13 - PET Dist Met (Liver + 1 lymph node) 10/13 - PET - Xeloda ineffective 11/13 - Liver packed w/ SIRI-Spheres 02/14 - PET - Siri-Spheres effective, 4cm tumor in lymph-node 03/15 - Begin 15 Rads 03/24 - Final Rad! Woot! 7/27/14 Bart passed away. RIP!
| | | | 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 | Welcome to OCF. Your 'patch' could be any number of things. Glad to read your CT came back ok.
Hopefully it will not be anything serious and easily cured.
Best wishes! 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: Mar 2014 Posts: 22 Member | Member Joined: Mar 2014 Posts: 22 | Welcome Katherine,
I'm fairly new to this forum as well, but it seems like a great group of folks and sharing your fears with people who've walked in your shoes will definitely help ease your mind. Waiting for test results has always been the worst part for me because I'm always thinking of the "what ifs." Just take a deep breath and focus on the things you can control (easier said than done right?).
I was 28 when I was suffering from a constant sore throat. I glanced in the back of my throat and, "huh, that's funny...my left tonsil appears to be covering half my throat up..." I went to an ENT (after figuring out what ENT stood for), and he said, "huh, that's funny...your left tonsil appears to be covering half your throat up..." He told me it was probably nothing; put me on prednisone and antibiotics (just like with you). The enormous tonsil was still there after a few weeks and I had it biopsied. It was stage 2 non-hodgkins lymphoma. Like you, I never smoked, never did drugs, wasn't a heavy drinker. But my brother died of lymphoma; guess it's in our genes. Long story short, I caught the cancer early and I'm still in remission, 10+ years later.
So you've caught it even earlier. I know you don't have the same cancer I had, but you can beat this thing!! Like I said, just focus on what you have control over. And listen to Bart! Have you read that guy's history?!? Shot at, declared DOA after an airborne car crash, not to mention all the chemo and radiation. I think he's some kinda cyborg. :-)
Brian Liebenow, Stage 2 NHL survivor (left tonsil), I eat everything through a PEG tube. http://travelingtubie.blogspot.com/2013/04/why-i-tubie.html11/03 - started CHOP chemo 12/03 - remission 1/04 - finished chemo 4/04 - started 25 rads to make sure they got all the cancer 5/04 - stopped rads after 20 due to severe reaction to radiation 5/05 - began seeing damaging effects of radiation 7/08 - PEG 4/09 - 5th unsuccessful jaw surgery Smile!! Laughter is the best medicine!
| | | | Joined: Aug 2013 Posts: 54 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Aug 2013 Posts: 54 | Welcome Katherine! You have found the best place to get information. I was Stage 2 on the tongue and am out 6 months from surgery. It's a tough surgery..... But it will save your life. When you find out details of your treatment let us know so we can tell you what to watch out for and expect. Stay strong.....try not to stress out. It will be over soon. Your stage is very curable.
48 yo female, quit smoking 4yrs ago, light drinker, Stage 2 SCC, Bx3, Dx 8/22/13, surgery 9/11/13. Partial glossectomy, bilateral neck dissection levels 1-4. Tongue reconstruction with flap from forearm. 87 Lymph nodes CLEAR. Tongue margins good at 1 cm. No further treatment planned. Monthly monitoring planned for upcoming year then periodic monitoring for next 4
| | | | Joined: Nov 2013 Posts: 37 Contributing Member (25+ posts) | Contributing Member (25+ posts) Joined: Nov 2013 Posts: 37 | Katherine,
I am a survivor and you are going to be also. Two things to take the the bank, you have cancer and its treatable. I know its easier said than done, but get a comfort level with your docs, read other blogs who have gone through what your going to go through. Ask for advice which you are already doing. Get your attitude ready to kick cancer butt!
SCC front left lateral tongue T2N0M0 After neck dissection. partial glossectomy 12/26/13. Perinueral Invasion. IMRT 60gy 30 treatments beginning 2/5/14 through 3/19/14.
| | | | Joined: Dec 2010 Posts: 5,264 Likes: 4 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,264 Likes: 4 | Hey Katherine - two things to be aware of - even stage one cancer can move to your lymphnodes so keep an eye on your neck post op, and chances are your cancer is not HPV related usually it is confined to the base of tongue and tonsil area. Regardless knowing for sure is good, welcome and ask any questions you need to. Hugs.
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: Mar 2014 Posts: 34 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Mar 2014 Posts: 34 | Thank you all for the words of encouragement! It's really nice to hear some positivity from people who have been there/done that. I really appreciate the support.
3/2014: 25, no risk factors (nonsmoker, rare drinker, HPV negative) SCC right lateral tongue, T1N0M0 - well-differentiated; surgery - removal of tumor, salivary gland + neck dissection 11/2017 - ovarian torsion 12/2018 - basal cell skin cancer
| | | | Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2006 Posts: 2,671 | Hi Katherine - Just one thing I would add to the excellent suggestions above. You mentioned being anxiety prone and that is treatable, too. So if you're anxious about the surgery, do mention your feelings to your doctor. He/she might be able to prescribe something for you that would help. Try to give yourself a time limit when you start being anxious - one minute or so and then switch to something more positive to occupy your mind. It takes practice, but it works! You caught this very early and you will survive this. My son was at Stage 2 and he's doing fine, now 7+ years later! Don't Google stuff. It's a crazy-maker. Come here often and you will get all the most recent, accurate information available.
Anne-Marie CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)
| | | | Joined: Aug 2013 Posts: 33 Contributing Member (25+ posts) | Contributing Member (25+ posts) Joined: Aug 2013 Posts: 33 | Welcome! I am very sorry about your circumstances that brought you here, but everyone here a r e great  I know it's scary. I have the same cancer except mine is stage 3. The surgery was hard but it got easier everyday. You will learn so much here and ask any questions you have. I know I do  we are all here to support you! You are no longer alone!♡
Last edited by ChristineB; 03-26-2014 06:25 AM. Reason: fixed heart (very cute!)
Age 36 Mommy of 4  Diagnosed 8/5-tongue cancer T2 tumor with partial-glossectomy 8/13/13 along with neck dissection HPV positive Path report all clear margins! 11/5/13- enlarged taste bud and mild Dysplasia Surgery planned for 11/12 11/12 cancer cells removed Staged increased to stage 3. T3N1 Chemo and rads started 3/4/14 33 rads and 6 chemo Peg tube 3/7/14 37 radiation and 8 chemo treatments Completed treatment 4/25/14 recurrence 12/1/15 surgery for Hemiglossectomy 12/11/15
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