Posted By: WorriedinChina Interpreting my Chinglish Biopsy - 05-22-2018 01:15 PM
Hi everyone,

Sorry this is quite convoluted.

I'm a 34-year-old British male who has been living and working in China for almost a decade. About 3 years ago, I noticed a small, white and painless keratinized lesion on the left hand of my tongue towards the rear. I'd convinced myself, based on obsessive Google searches, that it was Oral Frictional Keratosis and for a very long time I ignored it. On a visit home around two years ago, however, I visited a dentist who took one look at it and immediately said that it didn't look at all like cancer but that it should be biopsied just to be on the safe side.

I didn't, of course, take his advice until last week - in large part because, at that stage, I'd started to freak out that it was changing slightly and also because around Christmas I'd noticed another lesion parallel with the one on my tongue, this time on the buccal mucosa. That one is hidden away, however, and could have been there a lot longer.

Anyway, I finally plucked up the courage to visit the dentist here in China. He took a look at both lesions and straight away said he thought it was Oral Lichen Planus - probably a reaction to amalgam fillings that line up pretty much perfectly with the lesions. Like the British dentist, though, he said he'd feel more confident with the diagnosis following a biopsy.

So, I got one done.

A few days later, he called me and said the diagnosis showed squamous epithelial hyperplasia. It wasn't cancer, he said, and there were no signs of malignancy at this stage but I would have to have surgery. He also said he'd never seen a case like mine but assured me that I shouldn't be too worried because "whatever it is, we've got it very, very early." This just served to worry me even more. So, I went to the hospital and picked up the results to see them for myself. Despite going to a international hospital, they were in Chinese, so I had to have them translated.

Basically, the diagnosis says it's Oral Lichen Planus. But I'm not sure about the description because some things may have been lost in translation.

I'm pasting them below in the hope that someone can make sense of them.

Chinese hospitals are notorious for trying to scam their patients and this has been a constant fear of mine throughout all of this. I went to visit the surgeon for a consultation yesterday. He confirmed there was no sign of cancer but, despite the diagnosis in his hand, he said he thought it was leukoplakia and continued to suggest what he called 're-section' surgery to remove the lesions. Again, he didn't even mention OLP until I pointed out that this is what the pathology report said it was. He expressed surprise that I understood the Chinese, at which point he conceded it 'could be' OLP but that leukoplakia and OLP are very hard to distinguish from a biopsy. He said it looks more like leukoplakia. I think it looks like every photo I've seen online of OLP. Anyway, at this point he dropped the surgery angle and suggested a 'wait and see' approach.

The results are here:

Clinical diagnosis: 1. Oral Lichen Planus: 1 tongue (large) (1-1) 2 cheek (small piece) Ct〜block; The size of NAXA2XN.3cm, the area of mucosa O.6xa2cm, the area of mucosa O.6xa2cm, the area of mucosa AT was 0.4sekm, slightly higher than that of mucosa, B_ ( M) mucosa and submucosa 41m, 0.Ssa3sa2em, 5 tapir a5x0.3crn, sticky surface gray, The pathological diagnosis was: ( E.ee) Squamous epithelial mucosa was chronically inflamed with squamous cell hyperplasia, the adhesive acanthosis was associated with hyperkeratosis and lymphocytic infiltration was found in the submucosa.


I've been going out of my mind about this for over a year. I foolishly buried my head in the sand hoping it would go away - but it hasn't. At this stage, I want to get it sorted out - no matter what.


Posted By: WorriedinChina Re: Interpreting my Chinglish Biopsy - 05-22-2018 01:17 PM
Sorry a more accurate translation of the last part is:

The pathological diagnosis was: ( E.ee) Squamous epithelial mucosa was chronically inflamed with squamous cell EPITHELIAL hyperplasia, the adhesive acanthosis was associated with hyperkeratosis and lymphocytic infiltration was found in the submucosa.
Posted By: gmcraft Re: Interpreting my Chinglish Biopsy - 05-22-2018 03:08 PM
Whereabouts are you in China? If you are really worried, is it possible for you to go to Hong Kong for a second opinion?
Posted By: WorriedinChina Re: Interpreting my Chinglish Biopsy - 05-22-2018 03:46 PM
Thanks for the reply. I'm in Beijing. I could go to Hong Kong and I will if necessary but there are still some good Western options to exhaust here which I've not checked out yet. I was hoping just to get some insight into these results and, I guess, someone to tell me everything looks like it's ok :-/
Posted By: gmcraft Re: Interpreting my Chinglish Biopsy - 05-22-2018 04:03 PM
I’m afraid the members of the forum are patients and caregivers. We don’t have the medical training to thoroughly understand a biopsy report and determine what it really is saying. Your best bet is to try for a second opinion with an English-speaking doctor.
Posted By: WZ Re: Interpreting my Chinglish Biopsy - 05-22-2018 07:50 PM
Try this hospital in Beijing. It has the top ENT doctor in China.

Beijing Tongren Hospital (北京同仁医院) is a famous [1] institution which specializes in ophthalmology and otolaryngology (ear, nose and throat medicine). Its records state that it was established in 1886 by an American Methodist church.

The hospital has had to take steps, including registering its name as a trademark, in order to protect its reputation against people fraudulently using the "Tongren" title.
Posted By: KristenS Re: Interpreting my Chinglish Biopsy - 05-23-2018 01:43 AM
If it's of any comfort, we didn't know or suspect mine was cancer when I went in for surgery. It was a sore that wouldn't heal, and all other options had been exhausted. My ENT surgeon said that sometimes, you just have to cut it out and give it a fresh start. At that point, I had nothing to lose, so we went for it. Fortunately, he had the sense to go ahead and check biopsies as he went, because it did turn out to be cancer, and he kept going back till he got clear margins (I was asleep this whole time so didn't know till after, but I gather it was fairly nerve-wracking for my family). BUT ... it wasn't a completely unreasonable treatment to go ahead and just remove the sore and see if it would heal better that way. It wasn't even a case of a doctor not wanting to tell a patient a worst-case scenario (I can usually spot those a mile away) ... it simply wasn't what was expected.

This is NOT to say you have cancer. It's to say, having the surgery isn't an unreasonable treatment option, if it's what it takes to make that area heal. Worth asking for a second opinion, though, if you aren't sure about it. (This was my third doctor, so by the time he gave the advice, I trusted it.)

Either way, ((hugs)). Surgery is scary no matter what you face.
Posted By: DeniseG Re: Interpreting my Chinglish Biopsy - 05-23-2018 01:47 AM
I was diagnosed with leukoplakia about 3 years ago after a biopsy. At that time no doctor wanted to operate. My ENT said lets watch it and come back once a year. He also told me that only 1% turn into cancer. Well, I had to be that 1%. Things stayed pretty stable until one spot turned very sore, and was diagnosed with squamous cell carcinoma on the tongue. Can't tell you what to do in your case but I would get a second opinion somewhere. And if it turns out you don't need surgery now, keep an eye on it, have a doctor check it out regularly. Good luck!
Posted By: Susan2992 Re: Interpreting my Chinglish Biopsy - 05-23-2018 02:56 AM
I’m not familiar with how things work in that part of the world, but when I went for a second opinion (multiple times) the new doctor/hospital would have my actual biopsy slides sent to them first for their pathogy group to review. In the USA there are oral pathologist who are better trained in oral abnormalities. I would recommend a second opinion at some point.
Posted By: WorriedinChina Re: Interpreting my Chinglish Biopsy - 05-23-2018 04:31 AM
Thank you for all the replies. I realise it's unreasonable to ask people on a forum to diagnose me based on this. I will go and get a second opinion. It's just that the past few months have been absolute hell. I have an extremely high pressure job and the emotional strain I've been under has been immense. I thought the oral lichen planus diagnosis was definitive but now it appears not. I was just wondering if anyone could shed light on those details in the biopsy report. Doctor said no malignancy, no dysplasia, no cancer.

Presumably oral lichen planus has a pretty definitive appearance, histologically speaking. Is that not the case?
Posted By: gmcraft Re: Interpreting my Chinglish Biopsy - 05-23-2018 11:52 AM
I think you need to have some faith in your doctors. None of us is in a position to make a definitive statement. If you can’t trust the doctors you have seen, then you need to go find a second or even third opinion.
Posted By: ChristineB Re: Interpreting my Chinglish Biopsy - 05-23-2018 01:15 PM
Welcome to OCF! Im very sorry you are going thru a scare at this time.

Ive watched your posts and seen you have received many replies with good advice on what your next steps should include. Unfortunately, medical systems, hospitals, doctors and even specialists can vary greatly depending on which one you see in which part of the world. Off the top of my head I cant think of any of our members who are from your area to help guide you thru Chinas medical system. Here in the US, dentists mostly focus on teeth and do not usually treat mouth sores. Only a very few will do an occasional biopsy but this is normally done by an ENT or oral surgeon. Patients always should go to someone who is very experienced to get the best medical care possible. Even experienced medical professionals can not tell by simply looking at something what it is. A biopsy is the only way to tell for certain what any sore, bump, lump, etc is.

To further explain... Any sore, bump, spot, etc that appears in the patients mouth that has not resolved itself within 2-3 weeks should be checked by a professional. By "professional" I mean an ENT who specializes in treating oral cancer patients. Not all ENTs are the same, you do not want to see one who primarily puts tubes in childrens ears. An oral surgeon may be another reliable specialist to get checked by but only if they specialize in treating oral cancer patients and not TMJ or wisdom teeth removal.

As others have already advised, our site is made up of oral cancer patients/survivors and caregivers. We do NOT have years of medical school, clinical patient experience, the patients full medical history, or even the patients in front of us to be able to determine what is going on. Even seeing photos isnt a help to us as we are NOT medical professionals and arent qualified to explain test results written in complex medical jargon (or translated from another language). Another thing to take into consideration when asking questions here is that every single patient is different and will respond to things in their own unique ways which may or may not be similar to another patient who has a similar history. Comparing patients is never an equal comparison. You can take 10 people who on paper appear identical... same age, sex, weight, tumor size, tumor location, stage, node involved, live in the same general area, same habits (smoking or not, drinking or not), etc. On paper you would think all of these people would pretty much go thru the same things with treatments, recovery, etc. But they do NOT! This is why patients need to seek out the very best medical care they can and follow their doctors instructions until they are completely healed.

Since you have first noticed the sores in your mouth a few years ago and noticed more recent changes 6 months ago, its time to take this problem seriously. Your next step should be to get a definitive answer as to what exactly you have going on in your mouth. You should seek out a qualified medical professional for at the very least to review your test results. Since the test was so long ago you may need further testing to determine exactly what you are dealing with. This time I suggest listening to your doctors advice. You will need to follow up on this until you have a complete understanding of what you are dealing with and how to fix it. The more time that is wasted delaying a diagnosis and treatment, the harder it will be to treat. If your mouth issue is diagnosed as cancer, you MUST take care of this and not brush it off. Untreated cancer can quickly advance and become very difficult to treat. You do not want to be in a position in what could have been easily fixed months ago, is not able to be treated any longer and is considered terminal.

Another thing that could be negatively affecting your mouth issue is stress. Its not easy to avoid stress but stress can make medical issues far worse than if the patient led a less stressful life. One other thing that would be helpful is to avoid any mouth irritants. Anyone who has a mouth sore (that could be a serious problem) should avoid alcohol, all forms of tobacco (e-cigs too), mouthwash that contains alcohol, etc. These things can play a significant role in irritating your mouth. Over the years, Ive seen many people who simply avoided the mouth irritants and their mouth healed itself.

I hope you can do your best to get to the bottom of what brought you to our online public forum. Its up to you to make this a priority and get it taken care of. Please let us know how you make out. Best wishes with everything!
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