#87405 01-06-2009 05:29 PM | Joined: Jan 2009 Posts: 33 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Jan 2009 Posts: 33 | Hi everyone. I had no risk factors for oral cancer...no family history, never smoked a cigarette in my life, only drink maybe one drink a week with dinner, if that...yet, on my 24th birthday I had a biopsy done after being bothered by what I thought was a canker sore for a couple of weeks. I got the results back shortly after that, just 1.5 weeks before my wedding nonetheless. It turned out I had tongue cancer, borderline between stage 1 and stage 2. I had surgery done this past October, 2 days after I was married (having our honeymoon in the hospital was a real joy :\) by a great surgeon who was able to remove the entire tumor without needing to do any reconstruction/skin flap. He also removed all the lymphnodes from the right side of my neck and the salivary gland there as a precaution. All the edges of the removed section of tongue plus lymphnodes and gland returned negative for cancer. Therefore it wasn't recommended that I get radiation at this time, although I have check-ups scheduled with a radiation specialist for the next year or so. They also tested me for HPV, but I was negative. Who knows why I got oral cancer...bad luck I guess. I guess the reasons I decided to join this board are: 1. To find other people like myself who were young without risk factors. 2. To have support as I constantly worry about every bump or pain I get anywhere close to my mouth. For instance...I burned my tongue on some hot coffee yesterday and now today, since my tongue still hurts and has a few tiny bumps on it, I'm dreading my cancer has returned. I'm pretty sure this must just be the result of burning my tongue, but I'm just so paranoid all the time. It'll be nice to get support from other parnoid people in remission and advice as to when to alert the doctor outside of my 6 week check-ups. I look forward to being a part of these forums. Thanks in advance to everyone for your help and support. -Jen
9.29.08: Dx @ 24 w/ T2 SCC, tongue 10.14.08: Partial gloss. & r. neck dissection. Margins/nodes all clear. No HPV. No rad. 10.06.09: Recurrence in l. lymphnode 11.16.09: L. neck dissection + lost nerve XII 12.28.09: 33xIMRT w/ concurrent 3xCisplatin (no PEG) 02.15.10: Done with treatment!
| | | | Joined: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Dec 2008 Posts: 1,004 | Hi Jen,
Welcome to OCF. There are a lot of great people here. Always feel free to ask any questions.
I am 29 and was diagnosed when I was 27 with squamous cell carcinoma on my right tongue. I also had no "risk factors" but as you will learn there are many young people here with OC. I have only been treated surgically also and am getting married in March!!! The cancer/wedding combo stinks doesn't it?:)
I can relate to the anxiety and constantly worrying. My fiancee looks at my tongue all the time to make sure it looks ok. He always knows what he's looking at too...maybe your husband can do that for you. That is how I have learned to not be nervous all the time. Also, you can never be too careful. If you are ever concerned just call your doctor. It's always better to be safe than sorry.
Welcome again and I look forward to getting to know you and helping way I can.
Suzanne
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: Jul 2008 Posts: 228 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Jul 2008 Posts: 228 | There are a bunch of us out there! I turned 23 about two months before I was diagnosed with stage three (borderline stage 4) SCC on the right side of my tongue. I was put through the ringer with surgery in May and then I finished radiation and chemo at the end of July. I have officially been in remission since October. I didn't have any of the risk factors either, never smoked, drank maybe a couple times a year, no family history of cancer, etc... and I've always been very healthy - but I guess that's the way it is sometimes.
Maybe some of the other young'ns will come out of the woodworks and say hi. I have a blog listed in my profile if you need some entertainment. I started it when I was diagnosed and I still keep up with it.
Anyway, welcome to the boards!
Stephanie, 23, SCC on the right side of my tongue, surgery on 5-19-08, over half my tongue removed, free flap constructed from my forearm, bilateral neck dissection, one positive node. Radiation (32) and chemo (carboplatin) started on 6-16-08. Recurrence 4/09 in lungs.
**** Stephanie passed away 12.15.09.... RIP our dear friend****
| | | | 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 | Hi Jen: Welcome to OCF. You are young to have OC. Im sure you have been told that by so many people. There are several people on the forum who are in their 20s. I wish I could say I was one of them Last year we had a girl who was only 18 on here. She rarely posts and has moved on with her life. You are very fortunate to be young, and have not been treated with chemo and radiation. The surgery Im sure was bad enough especially happening right when you got married. Dont feel bad about being more aware of your body. Cancer can be very traumatic and opens your eyes to be watchful for what doesnt seem right. Try not to worry, healing takes longer after you have gone thru cancer. It will be nice having you here. Im sure you will be able to share your experience with others who are just starting out. 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: Sep 2008 Posts: 489 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Sep 2008 Posts: 489 | Welcome Jen and I'm so jealous of you being in AZ right now. Hopefully you are in the warmer part of the state. I lived in Show Low for approximately 6 years and miss the mountains and the desert terribly. There should be plenty of wild flowers this year with all the moisture that you have been getting - actually they should start showing up in the next month. So sorry that OC has brought you here, but I hope that you are completely done with any more cancer or treatments. The group of people here are wonderful and there is no comparison to information from people that have been there too.
48 SCC Floor of Mouth 7/06 9/06 Surgery, bilateral neck dissection, 58 nodes clear PT2pN0pMx 35 rad 2006 Recurred 6/08, 1 Carboplatin, 1 Cisplatin Surgery 9/08 - Total glossectomy, free flap from pectoral muscle, left mandible replaced using fibula 35 IMRT & Erbitux 11/08 4/15/09 recurrence 6/1/09 passed away, rest in peace
| | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | Jen
In 1971, I was a guest speaker at an University Abnormal Psychology class and I closed out my lecture with the old axiom: "Even Paranoids have Real enemies". This is the place to post your worries and concerns and get support not mindless platitudes or breezy dismissals. I don't think you are paranoid at all - especially considering what you have gone through.
65 yr Old Frack Stage IV BOT T3N2M0 HPV 16+ 2007:72GY IMRT(40) 8 ERBITUX No PEG 2008:CANCER BACK Salvage Surgery 25GY-CyberKnife(5) 3 Carboplatin Apaghia /G button 2012: CANCER BACK -left tonsilar fossa 40GY-CyberKnife(5) 3 Carboplatin Passed away 4-29-13
| | | | Joined: Nov 2005 Posts: 1,128 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Nov 2005 Posts: 1,128 | [quote=suzanne98]My fiancee looks at my tongue all the time to make sure it looks ok. He always knows what he's looking at too...maybe your husband can do that for you. That is how I have learned to not be nervous all the time. Also, you can never be too careful. If you are ever concerned just call your doctor. It's always better to be safe than sorry.[/quote]
I find that it's best to look once a week or so, not every five minutes, because I won't detect the gradual changes.
BTW, this is a good example of what someone can do to help -- Sharing the burden of looking for changes.
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: Feb 2007 Posts: 790 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Feb 2007 Posts: 790 | Hi Jen- I'm 35 and was diagnosed when I was 33. Not as young as you but definitely on the younger side. I'm so glad that you were able to have the surgery without the freeflap and didn't have to have radiation. Just be very familiar with your mouth and tongue and check it often. Sounds like they caught it early.
I smoked very briefly in college and only drank wine and beer on weekends so I was considered not to have many risk factors either. Soemtimes it is just what you said.. bad luck.
Take care and know that you have a lot of support here.
KATE
Tongue Cancer T2 N0 M0 / Total Glossectomy Due to Location of Tumor
Finished all treatments May 25 2007 Surviving!!!
| | | | Joined: Nov 2008 Posts: 72 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Nov 2008 Posts: 72 | Welcome Jen! I can relate pretty well to what you are going through! I am 23 with no risk factors either. I was married 10.19.08 and my biopsy was 1 month later. I had my partial glossectomy and neck dissection 12.20.08. I am new to remission and I am going through a lot as well. I have a blog as well www.remissionorbust.blogspot.comFeel free to contact me anytime [email protected]. I know that by having a contact for support and questions has helped so much. I look forward to talking with you!
*Shaylynn* 11.25.08 SCC of tongue diagnosed @ age 23 T2N2cM0 12.20.2008 Partial glossectomy & left neck dissection. Clear margins. 6.24.09-Pet Scans show 2 areas of concern 8.5.09-Recurrence-Perotid Gland and swollen node removal 9.29.09 Carboplatin & Taxol x8 Tomo x39 11.19.09 WILL COMPLETE TREATMENTS!
| | | | Joined: Dec 2008 Posts: 8 Member | Member Joined: Dec 2008 Posts: 8 | Hi Jen - it's frightening how many of us are going through this at such a young age. I was diagnosed 2.5 months ago, age 29.
Never smoked in my life, and drink only occasionally. I had major surgery, two flaps built as my first one died. No radiation at the moment, but I've been strongly encouraged to get a second opinion - which I'm doing.
Take care and keep in touch.
Tamara
Diagnised 29th Oct 08 (29 years old): SCC, T2N1 - partial glossectomy (25%); flap construction (twice - first one died); neck dissection 8 nodes removed, 1 node positive; trache - 14 days, partially collapsed lung. No radiation at this time.
| | |
Forums23 Topics18,170 Posts196,933 Members13,105 | Most Online458 Jan 16th, 2020 | | | |