| Joined: Nov 2014 Posts: 10 Member | OP Member Joined: Nov 2014 Posts: 10 | I had a white swirly spot the left side of my tongue for a few months that I treated like a canker sore When it didn't go away I went to the dentist who advised it was a leukoplakia. Well the first biopsy showed a severe dysplasia and then it started growing back. 3 weeks after the first surgery I had a second procedure. The biopsy showed cells suggesting squamous cell carcinoma on the border of the sample. I was shocked! I don't drink or smoke, I am heavily active.(Honest on all 3) I am overweight though...my diet could use some work. And I am 41. Genetics is a factor as most of the females in my family are BRACA 1 and 2 positive. So now I will have third procedure on December 18 and a have referral to the cancer clinic for possible radiation. I was told it is localized but WOW. I am a healthy, strong person. So I am also having a bunch of blood work done and will be seeing a physician and naturopath too. So I think I have my bases covered. Any advice? | | | | 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! There are several oral cancer patients who are members who have no known cause. Im sure this has come as quite a shock. Stick with us and we will help get you thru this.
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: Sep 2014 Posts: 87 Likes: 2 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Sep 2014 Posts: 87 Likes: 2 | While there are common risk factors that increase the likelihood of getting cancer, there are many of us who were otherwise healthy and found themselves having to deal with this horrible disease. I never smoked, didn't drink all that much and am a competitive dragonboat paddler. Actually qualified to go to the world championships this year but had to leave the team (temporaily) because of my surgery (partial glossectomy, wrist flap, skin graft from thigh, etc.), recovery and radiation treatments. I'm back on track to race competitively again next season, with my spanky new tongue and fancy wrist scar.
It sounds like you are getting a team of doctors together, so that's about all you can really do. Make sure you get the best treatment available to you, and the rest is in their court to do their best to fix you up. Easier said than done, but try not to let your mind dwell on it and worry constantly - this will not benefit you at all. I know it's really scary, but you've taken steps to get on the right path to get rid of whatever baddies you have growing in there.
Dx 2014Jan29 (42 yr old otherwise fit nonsmoker) SCC tongue stage III T3N0M0 subtotal glossectomy, partial neck dissection, RFFF, trach, NG tube 2014Feb25 16 days in hospital RAD 25 zaps 2014May5-2014Jun9 Back to work, paddling & hiking shortly afterwards
| | | | Joined: Nov 2014 Posts: 10 Member | OP Member Joined: Nov 2014 Posts: 10 | Thank you I appreciate it! | | | | Joined: Nov 2014 Posts: 10 Member | OP Member Joined: Nov 2014 Posts: 10 | You know that's my biggest fear not being able to be active. I'm trying to just wait for my appointments and put things out of my mind. I'm best kept busy so I added a little bit more training to challenge myself. My parents coach dragonboat teams and I appreciate the power and strength of a paddler! Thanks for the advice! | | | | Joined: Mar 2014 Posts: 286 "OCF Down Under" Gold Member (200+ posts) | "OCF Down Under" Gold Member (200+ posts) Joined: Mar 2014 Posts: 286 | Hi and welcome. There's not a great deal of value in looking back at the cause, any thoughts of guilt or regret are just a burden you don't need for the journey ahead.
There are all sorts of alternative therapies and activities that can compliment your treatment and support your recovery. Just don't let them interfere with the proven scientific treatment methods. You'll be surprised how many of your friends will send you links about miracle cures. Naturopathy is fine for a support role but I'd be very alarmed if they recommended you ditch the traditional treatment and live on pumpkin seeds, as one tried to do with me. Cheers, Dave (OzMojo) 19Feb2014 Diagnosed T2N2bM0 P16+ve SCC Tonsil. 31Mar2014 2 Cisplatin, 70gy over 7 weeks (completed 16May2014) 11August2014 PET/CT clear. 17July2019 5 years NED.
| | | | Joined: Nov 2014 Posts: 1 Member | Member Joined: Nov 2014 Posts: 1 | Your situation sounds very similar to mine. I'm recovering from 2nd partial glossectomy &first selective neck dissection now. Which procedures have you had? What are you having done on 12/18? Which city do you live? I'm am 44yrold female in NYC and can introduce you to great doctors around here. What is poor abt your diet?
| | | | Joined: Oct 2013 Posts: 559 Likes: 1 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Oct 2013 Posts: 559 Likes: 1 | Hello LR: Don't be too bothered by the fear of not being able to remain active. For some, during treatment they are so physically drained and fatigued, just getting through the day is an accomplishment. For others, we were able to remain pretty active throughout treatment, no marathon running mind you, but in no way was I confined to the couch or bed. In fact, unless I told people about it, they didn't even know I had cancer.
So, don't get to worrying too much right now. Your body will let you know what it can and can't do. And seven or so weeks from now, when radiation is over, you will start back on the road to recovery to your new normal. It will be different from before cancer I promise, but that doesn't mean it's all bad either.
I'm almost one year post treatment and outside of food still tasting bad to neutral (a few things taste good) and occasional dry sinuses and throat I have no problems. I did lose 42 pounds during treatment, so the new skinnier look is most appreciated.
Hang in there, you will get through this just fine. When it gets tough, lean on us for strength; we have all gone through what you are facing; we did okay, you will too.
Tony
Tony, 69, non-smoker, aerobatics pilot, bridge player/teacher, avid dancer (ballroom, latin, swing, country)
09/13 SCC, HPV 16, tonsillectomy, T2N0. 11/13 start rads, no chemo 12/13 taste gone, dry mouth, 02/14 hair slowly returning 05/14 taste the same, dry sinuses, irrigation helps. 01/15 food taste about 60% returned, dry sinuses are worse in winter. 12/20 no more sinus problems, taste pretty good
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