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jrick Offline OP
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Hi, I'm a 35-year-old male. I haven't smoked or drank for about 7 years, though I smoked socially for many years before that, and drank regularly for about 7. About four months ago, my dad died unexpectedly from a brain hemorrhage. Shortly after, I developed two strange health problems. First, I developed extremely high blood pressure, despite having never had high blood pressure, and despite neither of my parents having it. A 24-hour test showed that my top number got as high as 207 while sleeping, and the bottom number got as high as 127. I'm medicated now, and it's under control. But no one has been able to figure out why this has happened.

Second, a more relevant to this forum, I developed a small white patch under my tongue -- also something I've never had before. The look of it scared me, so within a week I'd made an appointment to have it looked at. The doctor thought it was probably nothing, but excised it, and sent it for biopsy to rule out dysplasia. It came back "mildly dysplastic, which he said meant that the risk of progression is probably well under 5%.

The doctor said that a company in the beta stage was offering to do free testing of all his patients' samples using a new method to look at protein expression and cytometric markers to try to better predict which people were are risk for malignant transformation. The doctor and his assistant seemed to think it would be quite interesting to get these results. Needless to say, I was expecting to be told that I was "low risk". But the results came back deeming me "intermediate risk", with the estimated likelihood that I will develop malignancy in the next 5 years being 49% (95% confidence interval: 32% - 68%). So, my main question to you all is how seriously I should take this. I have a follow-up appointment with my doctor in 6 months. But, after that, he is planning to leave it to my dentist to follow me, even though my impression is that my dentist doesn't really know anything about this stuff. Is it possible to see an oral cancer specialist at regular intervals with only pre-cancerous lesions? (Also, I'd of course be grateful if anyone has any insight into the possible connections between my blood pressure and my dysplasia. But I'm not expecting that!) Thanks, in advance.

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Welcome to The Oral Cancer Foundation! You are very fortunate to have your biopsy come back as dysplasia. I know it can be worrisome as dysplasia often comes back after it is removed and it can progress into oral cancer (OC). The chance of your dysplasia ever becoming OC is very slim but it can happen. We have had some of our members whose OC started out as dysplasia but not too many.

You didnt mention what kind of doctor you were seeing. Im not sure why your doctors assistant would encourage patient to do this "free" testing. Is this doctor and their assistant a specialist? If so what type? I have seen so many doctors over the past 11 years and I dont think I ever had an assistant instead of one of my regular doctors. Something else that I wasnt quite sure about in your post... normally biopsies are done to rule out cancer, not non-cancerous lesions like dysplasia. Oral cancer (OC) can be especially tricky to discover unless there is a visible tumor, often there are no major symptoms. Who would suspect a mild ear ache or a hoarse, scratchy throat could be a symptom of OC and is easily overlooked. Even the most experienced OC specialists need a biopsy to test for certain what exactly a spot or sore in someones mouth is. OC tumors can appear very similar to other non-cancerous lesions.

As far as your dentist following your dysplasia thats up to you. Ive seen a few of our members over the years who were not diagnosed with OC but have some other mouth issue for their dentists to keep an eye on them. I dont think an oncologist would take on a patient who does not have cancer, instead they are being referred there as a result from a 5 year malignancy prediction test. Its usually an ENT who treats oral cancer patients is who follows up things like this. Unfortunately, many dentists focus on only seeing the patients teeth and nothing else. Surprisingly quite a few dentists are not experienced with oral cancer tumors or OC patients. If your dentist is on top of things and has experience working with oral cancer patients then they could be all you need to monitor your dysplasia. I would have a chat with your dentist prior to allowing them to monitor your dysplasia. The last thing a patient wants or needs is for a change in the dysplasia to get missed as the dentist is more focused on the teeth. You can also check it one a month yourself and check in with a specialist if you notice any changes. Some patients wouldnt have the self control to only check their mouth once a month. If the patient is constantly checking their mouth, its unlikely they would notice their lesion slowly changing. Kinda like seeing your baby every day you wouldnt notice subtle changes but someone who sees the child every few weeks can spot the changes right away.

As far as the testing of your biopsy sample goes, sounds like its something newer. Im not a big fan of statistics. The odds for my survival were stacked against me, even my doctors did not expect me to survive. I think I had around only a 15% chance of survival. Anyway, I luckily did survive and next month it will be 11 years since my first OC diagnosis,. When I see a number like 49% it makes me think its pretty much a 50-50 shot. I suggest talking your situation over with the doctor who suggested the "free test" to predict your future chance of malignancy in greater detail. This is probably a newer approach that could work but there are so many other variables that come into play when trying to predict cancer appearing within the next 5 years. I would want to know how long this extra testing has been around specifically for dysplasia. If its hasnt been at least 10 years with a wide sampling of patients over at least 10 years then its hard to take the statistics very seriously. I dont know how a blind or double blind study would pertain to this type of testing or if it has been published in peer reviewed medical literature. Its very possible this type of testing which I think I may have heard of for other (more well known) types of cancer is just getting started for OC. Make yourself a list of questions prior to seeing your doctor.

Sorry, but my medical knowledge is mostly about OC and not other health conditions. As far as blood pressure spikes, in someone who has not been thru OC treatments Im not familiar with any info. In OC patients/survivors who have undergone radiation treatments, they can develop huge fluctuations in their blood pressure.


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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jrick Offline OP
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Hi, Christine!

Thanks so much for your thoughtful reply.

Yes, I was very grateful to learn that I didn't have cancer. I guess I got entitled after being given the "under 5%" figure!

The doctor I saw is a specialist in oral cancer and precancer. By his "assistant", I meant a student or something who was training under him. He is a professor at NYU.

The test is definitely new, and, I think, has only been tested on 200 people according to the literature they've published on it. Also, their most recent publication, which was supposed to establish that their method was much more reliable than looking at grade of dysplasia, had to be retracted for wrong sensitivity and specificity numbers. They still maintain that their approach is superior, however, and they seem to have big name experts working for them and on their board. So, I'm just not sure what to trust -- the "mild dysplasia = very low risk" message or the "50% over 5 years" message... I don't want to freak myself out, but don't want to be naive either. I'd be grateful if anyone has any thoughts on this.

Thanks so much, again, for the feedback.

Last edited by jrick; 03-13-2018 08:02 PM.
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As far as I've been able to tell, nobody gives you a prediction for past five years. Take the low risk one because it was a more established procedure, right? And let them tinker with the numbers for their new study. That's way too small a sample size for you to worry over yet. They just don't have enough to work with.

It's not the same thing at all, but have you followed any of the stories of folks using those family / ancestry DNA kits? They give you some interesting random ethnic information. BUT ... the more of your family try it, the more accurate it supposedly becomes. And if you log in at some future date and find out that more folks with ties to you have also logged in (and this can even be relatives you didn't know you had), it will adjust your percentages accordingly. The more data they have, the more accurate they can be. Wider samples are better. That sets aside the questions I've read about some Native American groups getting mixed up with some Middle Eastern groups (there are discussions on those) and the ethical discussion of what they do with all the data later.

BUT ... it does demonstrate that the larger the sample, the more refined the answers can get. 200 folks is a small sample for something as specific as Oral Cancer risk. I'd do my best to put that out of my head if at all possible (and not even show it to your insurance folks for their perusal, sigh) because your odds are good and that's the part you hold on to.


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
Joined: Dec 2017
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jrick Offline OP
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Thanks, Kristen! I really appreciate it. I'll try to take your advice!


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