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#171335 - 09/20/13 11:07 AM Oral Lichen Planus leading to Cancer  
Joined: Sep 2013
Posts: 25
Gilb Offline
Contributing Member (25+ posts)
Gilb  Offline
Contributing Member (25+ posts)

Joined: Sep 2013
Posts: 25
Kent, UK
Hi everyone,
I was diagnosed with Oral Lichen Planus so long ago, I can't remember - sometime in the 80s or 90s.
It was usually just a sort of white spider's web on the right inside cheek and would occasionally 'flare up', causing ulcers on my tongue. These were cured with a steroid mouthwash or Adcortyl in Orabase.
No-one ever told me it could lead to cancer so, when we moved from Manchester to Kent in 2006, I didn't bother to register with a specialist for check-ups because it wasn't giving me any grief.
After 7 years, when I next got an ulcer, the normal treatments didn't work, and it took 5 months to even get a biopsy.
That showed cancer, so I have just had laser surgery to remove it. I still have over half of my tongue, and am getting back to eating normally, thought I can't yet speak properly at all.
I'm just wondering what are the chances of recurrence and what horrors might be in store if it does come back


1990s: Oral Lichen Planus
Feb 2013: Persistent lateral tongue lesion
Jul 2013: Biopsy
Aug 2013: Diagnosis - T1N0SCC
Sep 10: Laser surgery to remove 1cm lesion with 1cm margin and biopsy of smaller second lesion further back
Sep 23: Tumour confirmed poorly differentiated & aggressive. Scans pending.
#171337 - 09/20/13 11:39 AM Re: Oral Lichen Planus leading to Cancer [Re: Gilb]  
Joined: Jun 2007
Posts: 9,747
ChristineB Offline
Administrator, Director of Patient Support Services
ChristineB  Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 9,747
PA
Welcome to OCF! You are very fortunate to have eliminated your cancer with the laser treatment.

If you would like to learn about other treatment options I suggest you read the Treatment section of the main OCF pages. Try not to get caught up with "what if" and make the most of everyday.

Best wishes!




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
#171346 - 09/20/13 02:50 PM Re: Oral Lichen Planus leading to Cancer [Re: Gilb]  
Joined: Dec 2010
Posts: 5,260
Cheryld Offline
"OCF Canuck"
Cheryld  Offline
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)

Joined: Dec 2010
Posts: 5,260
Toronto canada
HI there... okay - not to scare you... if you were only surgically treated there is a high incidence of recurrence - this being because this cancer can be quite aggressive and seed to the nodes and in it's early stages cannot be detected by a CT. I had a biopsy and CT that showed no spread, within three weeks a node popped up. When I had my surgery I had 40 nodes removed along with a 3rd of my tongue, and sure enough that node I had been feeling was full of cancer and had moved outside of it's encapsulated area. My dr. recommended me for radiation and chemo. Which I finished almost 2.5 years ago. Drs. have a tendency to think... great I got it all and the margins were clear - go home you're cured. However what tends to happen is a node will pop up shortly after and if you haven't been warned it may get left for too long - which can be deadly. This of course isn't 100 percent. Some people are blessed in that the removal of the area is all they need. Usually this is a stage one cancer. It depends a lot on the aggressiveness of the cancer as well. By the sounds of it either they were being cautious by taking a large amount (half a tongue) for bigger margins, or your tumor/lesion was quite large.

Did they do a neck dissection? If so then that's a good thing with this cancer. If it is HPV related (normally this kind is not) then that may be avoidable with radiation and chemo, but if it's non HPV related - then hopefully along with the surgical removal they also did the dissection.

If they did a dissection and that came back clear with clear margins on the tongue then that's the best scenario possible. Just keep a look out for any unhealing sores or lesions, and unusual lumps.

lichen planus can flare up from stress. 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
#171366 - 09/21/13 07:37 AM Re: Oral Lichen Planus leading to Cancer [Re: Gilb]  
Joined: Sep 2013
Posts: 25
Gilb Offline
Contributing Member (25+ posts)
Gilb  Offline
Contributing Member (25+ posts)

Joined: Sep 2013
Posts: 25
Kent, UK
Hi Cheryl,
Thanks for the warning and for taking the time to give such a detailed response. The ulcer was about 1cm on the right side close to the tip of my tongue and they took a margin of 1cm.
They didn't do a neck dissection and no scan, so they haven't even looked at my neck yet.

I'm seeing my medic on Monday. Any suggestions for what I should say to him?

p.s. My job WAS pretty stressful in the 80s & 90s when the lichen planus was at its worst. That might explain why it improved after I moved to a different job.


1990s: Oral Lichen Planus
Feb 2013: Persistent lateral tongue lesion
Jul 2013: Biopsy
Aug 2013: Diagnosis - T1N0SCC
Sep 10: Laser surgery to remove 1cm lesion with 1cm margin and biopsy of smaller second lesion further back
Sep 23: Tumour confirmed poorly differentiated & aggressive. Scans pending.
#171378 - 09/21/13 02:56 PM Re: Oral Lichen Planus leading to Cancer [Re: Gilb]  
Joined: Dec 2010
Posts: 5,260
Cheryld Offline
"OCF Canuck"
Cheryld  Offline
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)

Joined: Dec 2010
Posts: 5,260
Toronto canada
Yup! smile some people internalize their stress too which makes it worse. I would get to know my neck well. I had an actual tumor in my tongue it was 2.4 cm and 1.4 cm deep (the depth does matter - if it goes deep enough to touch a nerve that's troublesome) also you want to know the differentiation - this will tell you the aggressiveness of it. Weill differentiated - least aggressive, moderately differentiated - moderately aggressive, poorly differentiated - highly aggressive.

Frankly - you should have a scan - particularly to find out if any nodes highlight. A woman I was going through treatment after was a T1 tumor - like yours - but her ENT was worried it might be aggressive so he removed the part of her tongue and nodes and sure enough found cancer in one node and it had moved out of its capsule - so it's not always about the size of the lesion.

I would want to know how much cancer your ENT sees annually (you should go to a specialist who deals primarily with cancer of the head and neck ) I would want to be checked every few months (minimum) and I would keep an eye on my neck to see if there are any lumps. A feel once a week is fine. Just so you know what usual.

Best of luck.


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
#171379 - 09/21/13 03:39 PM Re: Oral Lichen Planus leading to Cancer [Re: Cheryld]  
Joined: Sep 2013
Posts: 25
Gilb Offline
Contributing Member (25+ posts)
Gilb  Offline
Contributing Member (25+ posts)

Joined: Sep 2013
Posts: 25
Kent, UK
Thanks again for the advice.
I Googled my Medic - he specialises in oral & maxillofacial surgery. I found a document for the startegy for treatment of oral cancer in my area, and his name was top of the list of experts.
They hold what they call MDT meetings to discuss and agree treatment with representatives from Surgery, Radiotherapy, Chemotherapy and Palliative & Supportive care.
I suspect I won't get better treatment without moving house.
I'm getting my treatment free on the NHS, but I also looked up who does the private treatment, and it was the same person.
I'll ask him about depth of penetration and differentiation, and about neck scans on Monday.
I understand I'll be having monthly check-ups.
Thanks again. This is a big help :-)


1990s: Oral Lichen Planus
Feb 2013: Persistent lateral tongue lesion
Jul 2013: Biopsy
Aug 2013: Diagnosis - T1N0SCC
Sep 10: Laser surgery to remove 1cm lesion with 1cm margin and biopsy of smaller second lesion further back
Sep 23: Tumour confirmed poorly differentiated & aggressive. Scans pending.
#171406 - 09/22/13 03:47 AM Re: Oral Lichen Planus leading to Cancer [Re: Gilb]  
Joined: Dec 2010
Posts: 5,260
Cheryld Offline
"OCF Canuck"
Cheryld  Offline
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)

Joined: Dec 2010
Posts: 5,260
Toronto canada
Usually for oral cancer it's an ENT - oral surgeons can only do so much - it's an ear nose and throat specialist who is supposed to treat this type of cancer. I would try to get you gp to refer you to one. I'm Canadian we have the same system. And oral surgeon can only do so much as far as I know things like neck dissections are out of their area of expertise.


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
#171411 - 09/22/13 07:59 AM Re: Oral Lichen Planus leading to Cancer [Re: Cheryld]  
Joined: Sep 2013
Posts: 25
Gilb Offline
Contributing Member (25+ posts)
Gilb  Offline
Contributing Member (25+ posts)

Joined: Sep 2013
Posts: 25
Kent, UK
For my last two consultations, there was another Dr present - an Oncologist. Medic #1 said "We don't think we'll be needing him, though" laugh
I'll have a word with my GP - see what he knows about the two medics I already have, and whether there is anyone else with more relevant expertise that he has access to.
You know - you're really a very useful person to talk to smile
HUGS


1990s: Oral Lichen Planus
Feb 2013: Persistent lateral tongue lesion
Jul 2013: Biopsy
Aug 2013: Diagnosis - T1N0SCC
Sep 10: Laser surgery to remove 1cm lesion with 1cm margin and biopsy of smaller second lesion further back
Sep 23: Tumour confirmed poorly differentiated & aggressive. Scans pending.
#171421 - 09/22/13 01:00 PM Re: Oral Lichen Planus leading to Cancer [Re: Gilb]  
Joined: Dec 2010
Posts: 5,260
Cheryld Offline
"OCF Canuck"
Cheryld  Offline
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)

Joined: Dec 2010
Posts: 5,260
Toronto canada
It wouldn't hurt to inquire - I originally saw an oral surgeon here in canada - he removed a thickened piece of skin from my tongue - the oral surgeon was a referral from my dentist. I liken them to a step up from a dentist and they do surgeries of the face and mouth reconstructive and otherwise and are qualified to remove growths and tumors in those areas. And ENT does that as well but their care is more expansive. I got the feeling that had my initial biopsy done by the oral surgeon had come back as cancer he might have removed it - then would have referred me to an ENT if there was more than a small amount of involvement. Now I just looked it up - because I was curious. In North America, Australia, and new zealand. They are members of the college of dentistry and in England they are members of the college of medicine. I do know there are ENTs in England as we have quite a few members here who have or are being treated, by ENT. ENTs treat disease of the head and neck. A lot of them make a great living doing tonsils etc. These guys don't see a lot of cancer and are likely ill equipped to deal with cancer as it is not their specialty. I was treated by an ENT with a specialty in surgical oncology.

The difference in education may be the key. Here they get their degree in dentistry - and do a two year fellowship in surgery. I believe in England they need a degree in dentistry and medicine/micro surgery.

The standard treatment for oral cancer here. Usually if you are diagnosed after a biopsy they do blood work and immediately send you for a scan to check for spread. Then they refer you to a ENT - I asked to be referred to an ENT at a top cancer center. Once it's determined the extensiveness and the type of cancer. (Including markers for HPV) they determined treatment.

HPV is often either found in the base of tongue (down your throat) or tonsils, sometimes they'll remove the tonsils and hit you with radiation and chemo, because this type of cancer responds well to rads and chemo, if it's in your base of tongue they may choose to debulk the tumor, or go straight to radiation and chemo.
Non HPV is treated often differently since it can be more aggressive and because it's not virus related is not as easily killed. Often they will remove the tumor itself and a bunch of lymphnodes, (I lost 40) this cancer has a habit of seeding to the nodes and they don't always present in a scan because its mocroscopic cancer. Which tends to become full blown tumors once the primary has been removed. At this point you could be in trouble if no further treatment was applied post surgery.

there are several markers they look for when deciding if further treatment is needed the size is one, the aggressiveness is, another, the third is nerve involvement (was the tumor deep enough to touch a nerve?) and finally - we're there lymphnodes involved (sometimes not determined until after the nodes have been removed) if one or two of the latter are present they will radiate and do chemo (chemo is optional in some cases )

So I guess I would ask your dr. What the difference between the two specialty areas are, why a maxillor- facial surgeon over an ENT - and what happens if a node pops up - and why no scan. If he or she says you'd need to see an ENT if a node pops up - I might be inclined to ask for a referral to one with a lot of experience in head and neck cancer now, Not later. And I would likely want the scan no matter what.

As I said we do have members from the UK - anyone have any other advice? Best of luck - I am a very positive person - just so you know - not a negative nelly at all (I know I sound scary and all doom and gloom) - there are two things this cancer has taught me that are very applicable here, 1 educate yourself on your dx know what is the norm with your cancer treatment and what's not standard protocol, and then ask questions so you know why there are any variances, and 2 better safe than sorry. Often if we make a mistake we can get a redo, cancer is a scary partner - it doesn't often leave room for a redo. In this case with this disease you don't want to be in a position of chasing it.

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
#171436 - 09/22/13 06:52 PM Re: Oral Lichen Planus leading to Cancer [Re: Cheryld]  
Joined: Sep 2013
Posts: 25
Gilb Offline
Contributing Member (25+ posts)
Gilb  Offline
Contributing Member (25+ posts)

Joined: Sep 2013
Posts: 25
Kent, UK
Wow Cheryl,
Thank you so much for going to so much trouble on my behalf.
We do have ENT specialists here, but I was referred to oral surgery because I had a persistent ulcer in my mouth, not my ear, nose, or throat.
Once cancer was diagnosed, I was already his patient.
I've asked for an appointment with my GP to discuss all of this, and I will be discussing it with my specialist tomorrow as well. I'll also be finding out exactly what the oncologist does.
I shall do my best to insist on scans and to ascertain exactly what they have learnt from the stuff they removed.
I know they included a nerve, but that was only supposed to be part of the margin, so I'll check on that specifically when asking about depth of penetration.
I'll add an update after my consultation tomorrow.
Once again - Thank you for all your advice
Hugs


1990s: Oral Lichen Planus
Feb 2013: Persistent lateral tongue lesion
Jul 2013: Biopsy
Aug 2013: Diagnosis - T1N0SCC
Sep 10: Laser surgery to remove 1cm lesion with 1cm margin and biopsy of smaller second lesion further back
Sep 23: Tumour confirmed poorly differentiated & aggressive. Scans pending.
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