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

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!

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

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.

Yup! 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.

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 :-)

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.

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"
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
HUGS

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

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

Not the best news from my consultation today.
My carcinoma was of the poorly differentiated, aggressive type, so head, neck and chest scans to come followed by probable neck dissection and possible chemotherapy/radiotherapy.
My poor wife is in bits. She's a natural worrier as it is, but she is not taking this well.

Hi Gilb, well I'm sorry to hear your news.
I well remember getting this news ourselves, twice.. As Kris's wife, it just shattered me. I was terrified. For him. For me and for our future.
You will both get through this, believe me.
I found the waiting very hard, but once a treatment plan was in place and underway, I was able to calm down And put my fighting hat on.
Give your wife time. Do let her voice her thoughts, fears and worries.
She may want to stay terribly close to you - I wanted to touch Kris constantly. A reassurance that he was still there, when I was terrified of losing him. Let her love you.
Thinking of you both,
Tammy

I know the news sucks but it is far better to catch it now than than later - hopefully they will do the neck dissection ASAP. tell your wife not to worry. It's a one foot in front of the other prospect. Time is of the essence here, you want it out, so push... Politely - for them to get you in as soon as possible. And scans normally only take 24 hrs for results. Don't be waiting a week to get the results. hugs and much luck to you.

Glib, your wife can join the OCF forum as well. This may help her to feel more in control. As a caregiver, she has a very difficult job in the near future. If she joins OCF she will be able to connect with other OC caregivers and find moral support which many caregivers need too. Some caregivers will need to use anxiety meds for a short while to help them handle all the stress. We are here for both of you.

Hi Tammy,
Thank you for your message.
You clearly understand the situation well. That's exactly how she has reacted. She's clearly terrified of being left on her own without me, especially as my job brought us to a part of the country far from family and friends.
Up to now, she hasn't wanted to talk about it to anyone, but she's always been a natural worrier, and I just worry that she's bottling it all up too much

Hi again Cheryl,
The 'time is of the essence' bit is worrying. Despite the nature of the news, my doctor could only spare about 3 minutes of his time to deliver it during a very busy clinic.
I will have to wait up to two weeks for the scans, then I suspect at least a week for the results.
I already pushed as hard as I could to have the scans done this week, but there's only so much you can say.
Unfortunately, there just seem to be too many patients and not enough resources.
If only I could have afforded �150 per month for medical insurance, I could have had the same treatment, but quicker.
Anyway, I'll push as hard as I can :-)

HUGS

Hi again Christine,
Unfortunately, Von doesn't like computers much, and she doesn't want to talk about this at the moment.
Our daughter's in the US at the moment, on holiday, but will be back on Friday. I'm hoping she'll be able to open up to her.
Also, my GP is on leave at the moment, and I can't get to see him for another 2 weeks but, when we do, I'll discuss her situation with him as well as my own.
Thanks to you and everyone else for being so supportive :-)

Gilb - I just wanted to chime in here as a (former) caregiver to my son. I know how terrifying it can be to have to face the thought of losing someone you love so much. It's good your daughter will be back soon. Just having someone else around can help to diffuse the tension for Von and give her something else to do or think about. Maybe you could give Von some jobs to do like picking up prescriptions, or shop for things you need at a store, certain foods you like or that she can prepare for you or any outside activity. Perhaps your daughter can think of some things she needs her Mom to do for or with her. Doing something else and being active can bring some relief from thinking about what you are both facing. Once a plan was underway in my son's treatment and I had several things that needed doing, I felt more in control and things went a lot better. For me, being very, very busy kept me from thinking too much about all the "what ifs". You will both get through this. It's a tough road but it is doable and you have lots of compassionate and knowledgeable people here to help you every step of the way.

Hi Anne-Marie,
Thanks for the advice, I'll see what I can think up.
Unfortunately, our daughter lives two hours' drive away, but at least she'll be in the country and will be able to talk on the phone for longer than a few minutes, and I think we'll arrange to go and see her as soon as possible.

On another thread, I'm wondering whether I've been unnecessarily cruel; when I went in for the laser surgery, I told Von I'd prefer her to stay at home because she doesn't drive, it would be a 3-hour train journey each way, the hospital only allows visitors for a couple of hours in the evening, and I wouldn't be able to talk to her anyway.
I just thought there was no point in going through all the hassle of trying to visit.
Was I wrong? Should we have booked her into a nearby B&B or something? I just felt I'd worry about her less if I knew she was safe at home.
Presumably I'll be having a neck dissection soon. What would anyone advise?

Gilb, I don't think that's cruel. My surgery was 14 hours and I told my parents there was no point in staying at the hospital, they might as well wait at home. My team promised to call with an update and when they would be able to see me. My surgeon called them at 8:30 pm (I went in at 6 am) and gave an update. Maybe you can arrange for the same thing.

As for the neck dissection, I had it on both sides. There is no pain from it (there is nerve damage so that's actually a bonus). Usually they will only do a ND when the PET is positive for lymph involvement. The ND was the easiest part of the surgery, but took the most amount of physical recovery time for range of motion in the neck.

Thanks Tina,
That's rather reassuring on all counts.
last time, they weren't very good at passing on messages in either direction. This time, I'll pester them to see if it has been done.
Even though I couldn't speak, at least i was able to send her texts once I was alert enough.

As another aside, I was wondering if there are any physical manifestations of lymph involvement.
I've had what feels like a trapped nerve in my shoulder which has made it very uncomfortable to ride my bike all summer due to the pain shooting down my arm.
Is this likely to be completely unrelated, or has anyone else experienced the same and it has proved to be linked?
I've assumed it's unlinked and, as the pain is not sufficiently severe, I haven't reported it to medics.

HI again... well a neck dissection will cause a few issues... what tina said is true there is minimal pain as the nerve damage causes numbness. Hopefully they will get you in for this very soon. The sooner it is done the soon you can start treatment - and with poorly differentiated cancer i would think that maybe they will recommend it.

That said - because they cut your muscle in your neck you will need physical therapy for your neck, shoulder and arm, if you follow through with the exercises you will regain good use again. (if you have a bilateral dissection, then you will have to work on both arms) If you have radiation after the dissection it causes things to tighten up. SO you will need to stretch.

You will also have lymphedema (swelling in your face and neck region. Once treatment is all over and you've had a clear scan and a few check ups, you can try lymphatic massage. Since the lymph moves throughout your body, you don't want to be spreading it until you know you are clean.

You shouldn't be in the hospital too long. since this is a second surgery and the least extensive. So I would tell your wife to stay home, and if you can bring an ipad and or a computer or cell phone and email or text her frequently. ;o)

maybe that will help. I would also maybe print off some of the messages from here to help her realize she's not on her own. best of luck and tell them to get their butts moving on the dissection.

;o)

Gilb, I disagree. Let your Wife come with you.
Kris didn't want me to come initially. But remember, what happens to you happens to your wife too. It really does. Don't exclude her, that is extremely painful. She will worry more and honestly you will appreciate having her there to support and advocate for you.
To get through this you must be a team. Work together and support each other.
With respect to Cheryl and Tina, they are both the patient and not the Caregivers. Maybe that's why I see this so differently from them both.
In the beginning I often told Kris, " what happens to you , happens to me" .
I get how your Von is feeling.
If she would like to talk to me she can PM me, I am always here.
Tammy

Thanks Cheryl & Tammy,
As regards visiting, I really don't want her making that train journey. I'll have a word with the MacMillan Nurses and see if they have somewhere close to the hospital where she could stay.
The description of the effects of a neck dissection is a bit scary.
I always wanted to retire at 55, so I could have a good retirement - I'd heard too many stories of people working to 65 or 70, and dropping dead soon afterwards.
To that end, we have loads of holidays booked:
At the moment we're supposed to be in the Lake District for 4 weeks - we may get up there for a few days after these scans.
Then we have a 4 week cruise booked for the end of November, another one for February, and another one for next November.
We were also planning a 2-month US Road Trip for Aug 2015.
I'm thinking that, at the very least, we'll probably have to cancel our November cruise.
I'm wondering whether I should make the final payment on the February one at the end of October, and I'm even wondering if I'll be fit to do a long drive at the end of 2015 if my shoulders aren't going to be working.
Any ideas?

The neck dissection while sounding daunting actually isn't that bad. At least I didn't find it to be that way. I mean you look horrific for a week or so (depending on how they stitch you up - mine used hidden stitches, some have been given staples etc... you will have a few drains in for a day or two and then a dressing for a few more days. My surgery was 14 hours as they grafted my tongue and removed nodes. I was in the hospital for 10 days went home and ten days later I went to mexico for a week. Came back and got my pathology report, then a little less than three weeks later I was in radiation.

So if everything goes okay with your path, and they say no more treatment required that nov. trip could happen. If they say they want you to do further treatment, then chances are it is a 5 -6 week wait for healing then into treatment. That's a reasonable time line.

Now I said let your wife stay home, only because it would be a hardship for her traveling. Don't make her stay home - unless she wants too. If she is insistent in coming then that's okay as long as you can find a place for her to stay. Unless there are complications you will not be in for long 3-5 days? You will be a bit swollen, and definitely numb from the surgery, but you will be okay. You will likely have weakness in your arm on the operative side but you can start physio on that right away and to be honest, I was functional - able to dress and shower, etc.... good luck

Thanks Cheryl,
It's really good to have a proper idea of what to expect.
Although it's quite a lengthy process, it seems, as you say, not too horrendous.
I'm impressed that you coped so well, given the added complication of the tongue graft.

We've found a solution to the visiting problem:
It would have taken 3 hours and cost 30GBP each way on the train via London but we've discovered that, by taking 2 buses each way, she can be there in 2 hours, and it won't cost anything with her Senior bus pass.
Visiting is allowed from 2-8pm, but she would have to leave at 5pm for the last bus, and wouldn't be able to do it at weekends, but she is happy with that, and very relieved.

I rang my Macmillan Nurses contact yesterday, and got a better description of my treatment program, which was good.
Then I had a call from the hospital - I can have my MRI scan today - they've had a cancellation. I'll still have to go back for my CT scan, but c'est la vie.
As I understand it, the MRI scan is of the head and neck where they're most likely to find something and the CT scan is of the chest and abdomen where it's less likely, so I guess this is the most important one to have done quickly.
The nurse said that, unless they find enlarged lymph nodes today, they won't need to do a neck dissection. Does that sound right?
Do they ever open up the neck and have a physical look, or remove nodes from the upper levels and test them just as a precaution when a cancer is known to be aggressive?

I'm so thankful to have found OCF and all you wonderful people. You're such an inspiration

HUGS

P.S. It must have taken a dozen attempts to make this post before I finally discoved it didn't like the 'pound' sign.

Usually they will do a PET scan to look for lymph node involvement (this measures the sugars that are given off by cancer cells replicating). The MRI looks at the structures that are in the area being scanned. The CT is often combined with the PET, so that may be how they are doing it.

Each doctor is different on the plan, but my PET came back positive, so they did the neck dissection, removed and tested a bunch of nodes, but all were negative for cancer. Because there is nerve and muscle damage (it takes a good long while to get that back), it's not usually something they will do to investigate, unless there's an indication of need.

Glad you worked out a system with your wife. It's always easier for a loved one to see how we are doing - it's much easier to lie by email or text, and she would likely have felt that you were downplaying how you were doing to protect her.

Hmmm,
Thanks for that nugget of information Tina.
As far as I recall, no-one has mentioned a PET-CT scan to me before, but I've just looked it up, and they do have such a scanner sat in a mobile unit outside my hospital, so I'll have a word with my nurse to see if they have one planned and, if not, why not.

Pet / ct are actually widely done in the states - Toronto not, so I think it depends on where you live. And MRI is quite definitive as well. Likely if they find no nodes they probably won't cut unless you ask them to and even then probably not. My dr. Is cautious after many years of treating this cancer. The minute he saw me he told me I'm removing the tumor and 40 nodes. Even though the ct showed no involvement. I showed him the node that had popped up before surgery the day of surgery - he said - doesn't matter it's coming out. if they do send you home and say no surgery just keep an eye on your neck for any unusual lumps, rashes etc... And go for a monthy follow up. best of luck on the scans

Hi again,
I had my MRI scan of the neck on Thursday, and my CT scan of the chest and abdomen is arranged for Tuesday. I think, if they both show negative, I'll ask for a PET/CT scan of the neck just to confirm there's no early activity that the MRI scan missed.

I was wondering; it's now 18 days since my laser surgery.
Is there anyone on here who had laser surgery close to the tip of the tongue, where the lateral nerve was severed as part of the margin, who can tell me whether or when I can expect the numbness of the tongue to go away, and be able to speak properly?

Good morning Gilb. I'm new to the forum myself, about 2 weeks behind you it appears. But I read your thread and it appears you have a real friend in CherylD. I learned a lot by reading your thread.

From your posts it appears you are staying positive about all this.

Keep on fighting, I'll be checking on you to see how the scans go.

take care.