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Interpreting my Chinglish Biopsy #196468
05-22-2018 06:15 AM
05-22-2018 06:15 AM
Joined: May 2018
Posts: 4
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WorriedinChina Offline OP
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WorriedinChina  Offline OP
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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.




No
Re: Interpreting my Chinglish Biopsy [Re: WorriedinChina] #196469
05-22-2018 06:17 AM
05-22-2018 06:17 AM
Joined: May 2018
Posts: 4
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WorriedinChina Offline OP
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WorriedinChina  Offline OP
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Joined: May 2018
Posts: 4
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.


No
Re: Interpreting my Chinglish Biopsy [Re: WorriedinChina] #196470
05-22-2018 08:08 AM
05-22-2018 08:08 AM
Joined: Oct 2012
Posts: 1,134
Toronto, Canada
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gmcraft Offline
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gmcraft  Offline
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Joined: Oct 2012
Posts: 1,134
Toronto, Canada
Whereabouts are you in China? If you are really worried, is it possible for you to go to Hong Kong for a second opinion?


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.
Re: Interpreting my Chinglish Biopsy [Re: gmcraft] #196471
05-22-2018 08:46 AM
05-22-2018 08:46 AM
Joined: May 2018
Posts: 4
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WorriedinChina Offline OP
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WorriedinChina  Offline OP
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Joined: May 2018
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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 :-/


No
Re: Interpreting my Chinglish Biopsy [Re: WorriedinChina] #196472
05-22-2018 09:03 AM
05-22-2018 09:03 AM
Joined: Oct 2012
Posts: 1,134
Toronto, Canada
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gmcraft Offline
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gmcraft  Offline
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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.


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.
Re: Interpreting my Chinglish Biopsy [Re: WorriedinChina] #196476
05-22-2018 12:50 PM
05-22-2018 12:50 PM
Joined: Jan 2003
Posts: 109
Kansas
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WZ Offline
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WZ  Offline
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Joined: Jan 2003
Posts: 109
Kansas
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.


WZ | Stage 4, Tonsillar Cancer Aug, 2002
Re: Interpreting my Chinglish Biopsy [Re: WorriedinChina] #196480
05-22-2018 06:43 PM
05-22-2018 06:43 PM
Joined: Jun 2013
Posts: 345
alabama
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KristenS Offline
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KristenS  Offline
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alabama
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.


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
Re: Interpreting my Chinglish Biopsy [Re: WorriedinChina] #196481
05-22-2018 06:47 PM
05-22-2018 06:47 PM
Joined: Apr 2018
Posts: 48
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DeniseG Offline
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DeniseG  Offline
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Posts: 48
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!


Diagnosed 11/17 SCC right side of tongue
Surgery 2/18 Partial Glossectomy
Radiation 3/18 - 5/18
Clear PET scan 10/18
Non smoker, occasional alcohol use
Re: Interpreting my Chinglish Biopsy [Re: WorriedinChina] #196483
05-22-2018 07:56 PM
05-22-2018 07:56 PM
Joined: Jan 2006
Posts: 751
Pennsylvania
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Susan2992 Offline
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Susan2992  Offline
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Posts: 751
Pennsylvania
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.


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
Recurrence/Surgeries: Jan & Apr 2010
Biopsy 2/2011: Moderate dysplasia
Surgery 4/2011: Mild dysplasia
Dental issues: 2013-2017
Re: Interpreting my Chinglish Biopsy [Re: WorriedinChina] #196486
05-22-2018 09:31 PM
05-22-2018 09:31 PM
Joined: May 2018
Posts: 4
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WorriedinChina Offline OP
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WorriedinChina  Offline OP
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Joined: May 2018
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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?


No
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