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Joined: Mar 2018
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I have had Lichen Planus all my adult life. About 18 moths ago I found out my gums, bone and two teeth were all damaged from bacteria. I have erosive Lichen Planus and yet, before surgery, my Oral surgeon did not take a biopsy. He pulled two teeth, grafted new gum and bone in the area. After over a year he put the "bolts" in my left rear gum and bone as it did heal. Although because of Lichen Planus it was always painful. Somewhere along the line something happened. When I came back for more dental work, the lichen planus was worse. I was using a mouth rinse continually. I finally said, I want a biopsy. Even when the oral surgeon took the biopsy he said it was Lichen Planus and nothing to worry about. In two weeks, the day I was scheduled to see him again, I get a phone call from my dentists office. On behalf of their oral surgeon they said he had to cancel the appointment. I asked why. There was hesitation and then the receptionist said that I had to find a new oral surgeon. Finally, she said he can't see you because your biopsy showed cancer. Could he have had a little more consideration.

I'm terrified. I have an appt. to see an oral surgeon that is part of the CCC at Johns Hopkins. My biopsy from the dentist showed a Squamous cell carcinoma. It is also noted the lesion may have arisen within a verrucous carcinoma. My wife is great support but can't helping thinking the worst. I have a ten year old son who doesn't know. The back of my gum, to just under my tongue and onto my cheek is all a raised area. I have had similar lesions with Lichen Planus in the past. Does anyone else have experience with LIchen Planus going this way? I'm wondering if all of the raised area is OC, or a mix of Lichen Planus, being hopeful.

Interesting also that the oral surgeon who put the posts in always put in his notes that the area was healing well, when I don't rember it ever healing well. However, the area changed in character after he put the bolts in the grafted gum and bone.

Anyone who can reply with hope, encouragement, their own experiences it would be appreciated. I'll find out tomorrow but I'm afraid to. Also, I teach, so speaking is what I do for a living.

Trout (learning to breathe underwater)


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Well, you are definitely better off with a different surgeon. So sorry you are having to go through this, and with such an inconsiderate doctor! When is your next appointment? Tomorrow? Try to take someone with you, if you can, to help you remember all the things you're told ... you think you'll remember, but you might not, and an extra pair of caring ears is helpful. And then when you have extra questions, don't be afraid to call them and ask ... that's what they do.

((hugs))


Surgery 5/31/13
Tongue lesion, right side
SCC, HPV+, poorly differentiated
T1N0 based on biopsy and scan
Selective neck dissection 8/27/13, clear nodes
12/2/13 follow-up with concerns
12/3/13 biopsy, surgery, cancer returned
1/8/14 Port installed
PEG installed
Chemo and rads
2/14/14 halfway through carboplatin/taxotere and rads
March '14, Tx done, port out w/ complications, PEG out in June
2017: probable trigeminal neuralgia
Fall 2017: HBOT
Jan 18: oral surgery
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Welcome to OCF! Im very sorry to read about what you have been thru. Im sure you must be shocked.

From what I know of lichen planus, it can turn into cancer but the odds are low. We do have members who have had lichen planus. Off the top of my head I cant remember anyone recently had it turn into cancer. Even if we had 10 patients with almost the same medical history as you, its still not a equal comparrison. Everyone is different and will react to medications, procedures, medications in their own unique way. Regardless of what caused this, the next steps should be the same for all patients.

Im very happy to read you are being treated at a CCC. Thats the very best place for someone who may have a complex diagnosis. A CCC uses a team based approach so all doctors are on the same page. Thats called a tumor board meeting, as the patient you are able to attend as well. If you attend make sure to take someone along with you for an extra set of ears and to take notes. Too often these types of meetings cause the patients ears to temporarily stop working after they hear something that sounds like bad news or scares them.

One thing to remember is worrying has never helped anyone, all it does is get them upset. For some patients they become paralyzed by fear of the unknown. Do your very best to stay super busy to keep your mind from dwelling on your situation. Start a hobby, read a book, watch a movie that holds your attention, shovel snow (if you're in the NE), etc are all great ways to help pass the time and help you to avoid worrying. There is nothing about this situation right now that you can change. If you can focus on things that you are capable of controlling that also will be a big help in adjusting to your diagnosis. I understand completely what you are going thru, Ive been there myself (3 times). I know how hard it is and how our minds play tricks on us. That little voice inside your head gradually moves from the shock of hearing "you have cancer" to fast forwarding to contemplating your mortality. Do yourself a huge favor and find something positive to do when you find yourself "going there".

Theres a million and one more little tidbits I can give you. Im sure you are a bit overwhelmed right now. Take it step by step and day by day. You found OCF which is the very best online resource for anything to do with oral cancer. Were here to help, you can lean on us to get your thru this. We will do our very best to give you info and support so you can get you thru whatever your future holds with this horrible disease.

Hang in there!!!





Christine
SCC 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 smile
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Thanks to both Kristen and Christine for your your heartfelt replies. I am glad I found the site. Christine you could be a counselor. There are a lot of words of wisdom there.

I go today to see a
Head neck surgeon at Hopkins. Luckily I live in Baltimore. I’m praying for some new information, even though I know I won’ know that much until more tests. Since I found out, getting of bed in the morning is very difficult. Facing the day, particularly today, is hard. But I guess there will be many more days.

Thanks so much for your support. I’m happy to hear tidbits anytime.

Trout


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Hi Trout,

My husband’s ENT sent him on to the professor of the Otolaryngology Department at the university in much about the same way. We had to wait six weeks for our appointment. But once John had seen the doctor, I actually felt better because I knew he was in good hands. The doctor ordered a biopsy and post-biopsy, the treatment options were very clearly explained to us, including where John would be getting radiation, the possible wait times,etc. It was reassuring, to say the least.

Like Christine said, we took it one day at a time and we tried to keep our sense of humor. I would do little things like buy the doctor standing in line behind us at the coffee concession a coffee. It was my way of showing gratitude and the effusive thanks we received made both John and I feel good for the rest of the morning. It also made us more aware of people around us instead of being wrapped up in ourselves the whole time. It helped us to shift our focus away from the illness from time to time and to remember that life was still going on around us and we were still players in it. I encouraged John to,talk about his illness with his friends and, that, way, we got the emotional support and offers of help. It’s the isolation, I believe, that causes the feeling of loneliness in patitnets who have a serious illness. This is why I think this forum is such a good idea, that it allows us to ask questions and to develop a sense of togetherness because we have all been through it one way or another.

Please do keep posting. Vent when you need to, we will be here for you.




Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards

Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
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Today my wonderful wife accompanied me to Hopkins to meet with their surgeon. Everyone at Hopkins really does make you appreciate where you are. It’s a blessing I live in Baltimore and can easily go to Hopkins. Everything there pretty much ran smoothly. Once I saw the surgeon and she was done her questions and observations, in another 5 minutes she laid out everything that needed to be done. I basically will have the left lower mandible removed, reconstructed, and all my lymph nodes on the left side removed as well. She was upbeat that this is beatable and luckily I don’t seem to have a very aggressive type of OC. Verracosous, I think is the term. In two weeks or so, I should have surgery and then a week or so in the hospital. Of course a few things to do before that time. Plus, there could always be changes. The positive thing is that I should be able to keep teaching after recovery. Although I am scared, I am thankful as it could have been a much worse prognosis. I hope to be here often, because I can tell this place is filled with angels, wise ones and the strongest of warriors.

I am headed over to treatments to see what I can learn. Please keep in touch with me. Thank you gmcraft for your encouragements.


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Trout125,

You’re at one of the finest hospitals for head and neck cancer, John Hopkins! I’m sorry to hear of your diagnosis, but glad you’re getting sound advise here and elsewhere.

Good luck,

Paul


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






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Trout125,

I’m glad you are going to Johns Hopkins. Speaking from experience it is one of the best in the country. I started off at a local hospital where I had my first surgery. Over the years because of a number of issues I went to a few different larger hospitals, and finally ended up at Hopkins - by far the best experience and knowledgeable doctors and other staff. My last two surgeries were at Hopkins and if I had started there I would not have the many problems I do now.

If you want more details about my “oral cancer adventures” see my signature below. You can also search the posts that I made - I first went to Hopkins in 2010, so look for that time frame.

Wishing you the best!


Susan

SCC R-Lateral tongue, T1N0M0
Age 47 at Dx, non-smoker, casual drinker, HPV-
Surgery: June 2005
RT: Feb-Apr 2006
HBOT: 45 in 2008; 30 in 2013; 30 in 2022 -> Total 105!
Recurrence/Surgeries: Jan & Apr 2010
Biopsy 2/2011: Moderate dysplasia
Surgery 4/2011: Mild dysplasia
Dental issues: 2013-2022 (ORN)
Joined: Mar 2018
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Thanks to Susan and Paul for the encouragement and experience. Hopkins was impressive. Right after I saw the head/neck surgeon, I had to get an appt. with the surgeon who would remove bone from my leg. The admin. Asst. for that surgeon came out to the waiting area where I was and found me. One can tell their communication channels are excellent and everyone is focused. I am thankful Hopkins is where I will be.


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Trout125,
My husband is almost 4 months post treatment at Hopkins. You are very lucky to be there. I was so impressed by their sense of urgency, communication and team strategy. You are, no doubt, in good hands.

A tip for you. Use the Valet parking at the Weinberg building if you are going to be in the Weinberg or Zyad buildings. You can validate the parking pass and it costs the same as parking in the lot. In the last 3 weeks of my husbands treatment and the first 6 weeks post, it was a life saver to not have to walk from the garage.

Best of luck in your treatment.


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