| Joined: Jun 2015 Posts: 9 Member | OP Member Joined: Jun 2015 Posts: 9 | Hello all, I have bren lurking & decided to post. My brother (almost 19 years old) had a biopsy on thursday. My mom said the doctor called it a "plaque lesion"...not sure if that's exactly the way he phrased it though. It is a sore/lesion on the bottom of his tongue & floor of mouth. It started in january of this year & it apparently has come and gone. It hurts him. Seceral years ago he had an allergic reaction to the packing used (contained petroleum) after having his wisdom teeth taken out. He had HPV vaccine when he was younger. I am so anxious b/c in my mind i think "what else could it be besides something really bad?!" When you google things....only cancer seems to come up. It really scares me. Thanks in advance. | | | | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Dec 2003 Posts: 2,606 Likes: 2 | There are many possibilities and, infortunately, until you get the biopsy results, there is no other way to find out if it is cancer. Let's hope not.
SCC Stage IV, BOT, T2N2bM0 Cisplatin/5FU x 3, 40 days radiation Diagnosis 07/21/03 tx completed 10/08/03 Post Radiation Lower Motor Neuron Syndrome 3/08. Cervical Spinal Stenosis 01/11 Cervical Myelitis 09/12 Thoracic Paraplegia 10/12 Dysautonomia 11/12 Hospice care 09/12-01/13. COPD 01/14 Intermittent CHF 6/15 Feeding tube NPO 03/16 VFI 12/2016 ORN 12/2017 Cardiac Event 06/2018 Bilateral VFI 01/2021 Thoracotomy Bilobectomy 01/2022 Bilateral VFI 05/2022 Total Laryngectomy 01/2023
| | | | Joined: Jun 2015 Posts: 9 Member | OP Member Joined: Jun 2015 Posts: 9 | Thank you for your response. I appreciate it. | | | | Joined: Jun 2015 Posts: 9 Member | OP Member Joined: Jun 2015 Posts: 9 | The waiting game is awful. I remeber the anxiety of waiting between each course of action when my mother had cervical cancer when i was much younger. Thankfully she is cancer free & doing great today | | | | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Dec 2003 Posts: 2,606 Likes: 2 | That's good news plus you have some experience being around cancer, if that's what the biopsy shows.
I know a lady who is a 35 year survivor, June 4 was her anniversary. She was diagnosed at 22 years old.
Until that biopsy comes back, stay away from the Interent. It will wait for you to come back. Enjoy the time.
SCC Stage IV, BOT, T2N2bM0 Cisplatin/5FU x 3, 40 days radiation Diagnosis 07/21/03 tx completed 10/08/03 Post Radiation Lower Motor Neuron Syndrome 3/08. Cervical Spinal Stenosis 01/11 Cervical Myelitis 09/12 Thoracic Paraplegia 10/12 Dysautonomia 11/12 Hospice care 09/12-01/13. COPD 01/14 Intermittent CHF 6/15 Feeding tube NPO 03/16 VFI 12/2016 ORN 12/2017 Cardiac Event 06/2018 Bilateral VFI 01/2021 Thoracotomy Bilobectomy 01/2022 Bilateral VFI 05/2022 Total Laryngectomy 01/2023
| | | | Joined: Mar 2015 Posts: 55 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Mar 2015 Posts: 55 | My experience is that not knowing was the hardest part of this. That is, sadly, is where you are right now. Uptown's advice is right on target. You get through this a step at a time, not looking too far ahead, and keeping a positive attitude while hoping for the best and preparing for whatever happens. Good luck to you and your brother. Be sure to let us know what happens.
Peter, age 62 at Dx 3/27/15 Dx T2N2aM0 Tonsilar P16+ G3 SCC 4/6/15 Full PET clear except for above 4/24/15 TOLM tonsillectomy/clear margins. Neck dissection 20 nodes (1 w/cancer & extracapsular extension) 5/28/15 PEG in 5/27 - 7/10/15 Daily Radiation to 66 units cumulative; Cisplatin weekly X 7 8/24/15 PEG out 9/24/15 Full body PET - N.E.D. 12/22/15 CT and physical exam. Continued clear. 3/11/16 Physical exam. Continued clear. 7/12/16 One year post-treatment! CT clear. 7/7/17 2 years post - still clear
| | | | Joined: Mar 2014 Posts: 286 "OCF Down Under" Gold Member (200+ posts) | "OCF Down Under" Gold Member (200+ posts) Joined: Mar 2014 Posts: 286 | The doctor has limited time to explain things to you, so sometimes Google is helpful for understanding what the doctor is telling you. It is NOT useful for answering questions like "is this cancer" and "will this kill me", which is what you want to know. Only cancer comes up because thats what you are looking for.
There is a lot of waiting for a cancer patient. Waiting for test results, waiting in treatment rooms, waiting for years after treatment to see if it will return. Once you have it cancer never really goes away, its a storm cloud hanging just over the horizon.
Worry is a misuse of imagination. Do what you need to do, see doctors, get biopsies etc, and then put it aside. There is more to life than this. Make a conscious effort to keep a positive outlook on everything you do, and be grateful for every day you get to wake up healthy.
That is pretty much a letter to my younger self, of things I wish I appreciated last year. I hope you and your brother never go through what we've had to, but we're here for you if you do. 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: Jun 2015 Posts: 9 Member | OP Member Joined: Jun 2015 Posts: 9 | | | | | Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2006 Posts: 2,671 | Cal - your comment about thinking "What else could it be besides something bad?" is exactly what we were thinking after my son's treatment ended, and he had been told he had a spot on his lung which they were checking out. When you are in the "waiting game" it too easy to assume the worst and difficult to realize that the waiting is taking longer due to some reason other than the bad one. In my son's case, it was due to clerical issues because they had to wait on results from two different hospitals. And he's been cancer-free for several years, now. Sometimes "a spot is just a spot" If you can try to think of all the reasons for a positive outcome, it will keep you from worrying about all the negative stuff. And keep busy. Come here often and let us know how things go.
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 2011 Posts: 596 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Aug 2011 Posts: 596 | Hi, Cal. Here's to hoping for nothing but the best results on your brother's biopsy. Whether it is relevant to his biopsy or not, I am so glad to hear that he has been vaccinated against the worst strains of HPV. We need more of this all over the world. Education is key. I know how extremely hard it is to wait. We've all been through it, sometimes too many times. Just try to keep yourself and your mind occupied. Go to a funny movie or dive into a good book. Spend time outdoors or do anything that makes you feel some sense of comfort...except alcohol or illicit drugs, lol! I look forward to hearing some good news soon. Love and strength in OCF, Kerri
37 y/o fem at Dx (23 wks preg @ dx on 3/16/11) SCC L oral tongue (no risk factors) L partial gloss/MND 3/28/11 @ 25 wks preg T1-2N0M0; no rads/chemo Tonsillectomy on 8/6/12 +SCC L tonsil T2-3N1M0 (HPV-) Treated with 35 rads/7 carbo & taxol (Rx ended 10/31/12), but many hospitalizations d/t complications from rx. Various scans since rx ended are NED! Part of genetic study for rare cancers @ MGH. 44 years old now...I wasn't sure I would make it! Hoping for 40 more!
| | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,260 Likes: 3 | Cal.... let me share.
He needs to keep a close eye on it. I had the exact same thing years ago!!! and it was removed. 10 years later after two biopsies they found a tumor IN my tongue... and yes IT HURT.
I am not saying it's cancer I am not saying it will become cancer, I am saying he needs to keep a close eye on it and see someone every six months particularly if it persists. It cannot be ignored. Plus if it becomes more painful and worse he needs to go back right away.
My first biopsy came back the same as his. My second one came back inflamed tissue (they had removed the plack years before it had healed in that area, but a tumor grew UNDERNEATH so there was no sore or lesion just redness and pain) a few years later it had developed into an actual lesion and it was a stage 2 cancer.
He needs to be diligent. He's young. It's very rare, but not unheard of.
I am a veg head, have never smoked or drank in my life. I believe it was related to chronic irritation by a tooth in that area.
best of luck. and yay on the cancer free.
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: 286 "OCF Down Under" Gold Member (200+ posts) | "OCF Down Under" Gold Member (200+ posts) Joined: Mar 2014 Posts: 286 | Yes, be diligent, but don't let that build to paranoia. Be informed by the doctors not the internet (including us). We're not doctors we are mostly patients and carers. We'll share our experiences and suggestions with the best intentions, but you should take everything that concerns you to your doctor.
I use the internet to understand why the doctors are doing/saying what they do. If they say don't worry about it for 3 months because of xyz, I try to put it aside for 3 months. don't worry about it. The worry never quite goes away, but if I can't put it on a shelf for a while it would drive me nuts. 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: Jun 2015 Posts: 9 Member | OP Member Joined: Jun 2015 Posts: 9 | Results of biopsy showed mild dysplasia. The oral surgeon will strip the area and clear the margins. Not sure if i am using the correct term for removing the lesion. | | | | 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 | I know it probably sounds bad to you but to oral cancer survivors you are very fortunate! Its not cancer so hopefully only a quick surgery and thats the last you will have this problem.
Best wishes with your upcoming procedure.
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: Jun 2015 Posts: 9 Member | OP Member Joined: Jun 2015 Posts: 9 | Thank you so much Christine. | | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,260 Likes: 3 | Yes... that's terrific. Keep an eye on the area after the surgery. Go for regular check ups. Anything unusual go back to your ENT immediately.
hugs and YAY!
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
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