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What questions to ask pathologist? #199619
12-20-2019 08:43 PM
12-20-2019 08:43 PM
Joined: Dec 2019
Posts: 19
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Janey Offline OP
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Janey  Offline OP
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J

Joined: Dec 2019
Posts: 19
Hello,

What once was candidiasis on my tongue has turned into a solid white mass.

Yesterday, this mass and its core were removed by the pathologist.

She told me it is, at the very least, precancerous, and she has sent the specimen to a lab for analysis.

I see her again on January 9th, 2020.

What questions should I ask at this appointment?

I also have some white spots on sides of tongue and what appears to be leukoplakia on the inner cheeks of my mouth.

Thanks in advance!




PS... What questions to ask pathologist?: #199620
12-21-2019 07:47 AM
12-21-2019 07:47 AM
Joined: Dec 2019
Posts: 19
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Janey Offline OP
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Janey  Offline OP
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J

Joined: Dec 2019
Posts: 19
Hello,

I'm wondering whether there is anyone from Halifax, Nova Scotia here.

If so, could we meet?

Might you be able to accompany me to my January 9th oral pathologist appointment?

I'd like someone to help me ask questions ...


Re: What questions to ask pathologist? [Re: Janey] #199621
12-21-2019 08:38 AM
12-21-2019 08:38 AM
Joined: Feb 2015
Posts: 88
Boston suburb
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tlc356 Offline
Supporting Member (50+ posts)
tlc356  Offline
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T

Joined: Feb 2015
Posts: 88
Boston suburb
If it is cancer, find out if it is from HPV. If it is not, I've been told it is often from earlier smoking and later drinking. If not from HPV you'll need to avoid all smoke and drink. You'll also need to find treatment where they have experience with head and neck cancers (and not just cancer).
There must be more you'll need to ask.


SCC stage 1 Nov. '03,
SCC stage 2 (clear mrg, no rad, no chemo) RND, Feb. '15

TLC356
Re: What questions to ask pathologist? [Re: tlc356] #199622
12-21-2019 09:20 AM
12-21-2019 09:20 AM
Joined: Dec 2019
Posts: 19
J
Janey Offline OP
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Janey  Offline OP
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J

Joined: Dec 2019
Posts: 19
Thank you, Tic.

I've had HPV, but not sure if it's the throat.

It's most likely due to cigarettes and alcohol and I've cut both out.

I'm scared.

Re: What questions to ask pathologist? [Re: Janey] #199623
12-21-2019 11:03 AM
12-21-2019 11:03 AM
Joined: Jun 2007
Posts: 10,495
PA
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ChristineB Offline
Administrator, Director of Patient Support Services
ChristineB  Offline
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Joined: Jun 2007
Posts: 10,495
PA
Welcome to OCF, Janey! Im very sorry to read about what you have recently experienced!!! Its never easy when someone is told they could have a serious health condition. Even worse is waiting for test results to come back. Passing the time by staying super busy helps many to avoid the "what if..." way of thinking/worrying. As I reread this reply, I noticed Ive used the little tiny word that has a GIGANTIC meaning quite often.... IF!!! . Theres so many variables and nothing so far has been confirmed so everything is just speculating what could happen which may not happen at all. Staying more to the present helps to avoid "borrowing trouble from tomorrow" which we all can do when we're worried about something unknown. Oral cancer is NOT anything Id ever wish on my worst enemy!!! Hopefully you do not have this at all and will not need our services. We're here if you do need us anytime in the future.

Hopefully your biopsy results will come back as the lesion being leukoplakia. The ONLY way to determine exactly what something is would be is to do a biopsy. Even the most brilliant and most experienced specialists can NOT identify what a spot/sore/lesion/lump/bump etc is visually. Often leukoplakia is something health professionals like to "watch and wait" as it frequently returns even after it has been surgically removed. Most patients will nervously watch the area closely after having leukoplakia removed, only to see it come back. This can be very upsetting!!!

I think what you described as "now being a solid white mass" is thrush. For patients who have other ailments affecting their health, thrush can be difficult to eliminate. Thrush requires antibiotics like nystatin or it will continue to flourish which can be very painful!!! Anyone with a compromised immune system is prone to go thru thrush from time to time. Oral cancer patients/survivors tend to fall into that category with many here reporting they've had thrush after they had oral cancer. Something else I noticed in the info you posted, "a big white mass covering a large area" is NOT normally how oral cancer presents itself. Many oral cancer patients do not have any noticeable symptoms at all. Some will have pain while others do not, some have a sore throat or intermittent earaches or other seeming mild issues so you just never know!!!

Im sure none of this is easy for you right now! Its always a terrifying experience to hear you may have a serious health condition. Unfortunately I dont know how much more help we can be to you besides what I shared above. I'll try to explain some other things to help you better understand cancer, patients, OCF, your situation, etc. At OCF, we take our members private identities and health conditions very seriously. Everything here is completely anonymous. We only know as much about a member as they are willing to disclose to us. Some people are very private people and want to remain anonymous to the hundreds maybe thousands from all over the world who read this and every post 24/7 every single day and night. Our site has members coming from countries all over the world. That said, our members do NOT normally attend other members doctors appointments or even meet up in person. Like a needle in a haystack, finding any one person that is living in your general area and also has been thru leukoplakia where it changing into oral cancer is highly unlikely! That is IF that individual would feel comfortable sharing their own private medical history with a total stranger plus they're willing to meet you in person or if that one rare individual is even available at the time/day of your appointment. Im sorry!!! I definitely do NOT want to burst your bubble of hoping to find someone thats experienced and willing to accompany you or if you actually are ok with allowing a person you do not know to sit in on your doctors appointment hearing about your private medical info. Its not going to be very easy to first find someone nearby let alone all the other requirements you're looking for. Plus.... you may not have considered if the person you want to help you actually understands enough about leukoplakia to be a positive and knowledgeable influence.

Every one of us is an individual that will experience different things than others with a similar diagnosis. Theres far too many variables involved when comparing patients who at first may seem identical. Even if on paper everything matches, comparisons still do NOT work! For example... take several people who are all the same age, height/weight, sex, have the same type stage and location of their tumor, live in the same general area the majority of their lives, have the same profession, work the same shift for the same amount of time, be exposed to all the same carcinogens at the same point in their lives, have the same allergies, vaccinations, general health histories, same family dynamics, same amount of stress in their lives, take the same medications for the same other ailments, have the same smoking/drinking histories, eat the same diet... even their food is from the same store and original locations.... all those things look as if the people are the same individual but they will still have vastly different reactions to medications and/or treatments! It could all come down to one patient having some unforeseen complication for them to have a predisposition for a specific disease. You just never know!!! Something could work great for one person but even someone who appears identical could and will likely have an opposite reaction/experience that brings us right back to a phrase we commonly use ... everybodys different.

Besides everyone being an individual, we're just a group of people with a common bond as oral cancer patients/survivors and caregivers. Our members freely share their own experiences to help each other by drawing from what we have learned first hand ourselves. We do NOT have medical backgrounds/degrees or years of medical school, clinical patient experience, the patients full medical history, or the patient right in front of us to examine (we wouldnt know what we were looking at anyway) and ask clarifying questions to help figure out their specific medical condition. Since we all have been touched by oral cancer, a very serious, potentially deadly disease that leaves many with a host of lifelong health challenges its not unusual for us to know more about cancer than many other lesser serious health conditions. Please understand, almost every OCF member has or had oral cancer which is a rare disease. Also rare is to be formally diagnosed with leukoplakia. We do have some members but not many who first had leukoplakia before it changed into oral cancer, which does NOT usually happen. Off the top of my head, when I think of leukoplakia, I instantly think of only a couple members that have remained active without their leukoplakia ever becoming cancerous. I think the link below will help to understand premalignant lesions. Im sorry we do not have more info about leukoplakia or other pre-malignant conditions!!!


Wishing you all the very best with everything!!! Hopefully your biopsy results will return with a diagnosis of what you have as only leukoplakia!!! If not, and you actually have oral cancer... we're here to help you with info and support for anything/everything to do with oral cancer. Good luck!!!


Main OCF Site, Premalignant Lesions

PS... Ive just read you had been using tobacco and alcohol. That changes almost everything Ive written... those things are likely playing a huge part in your current situation. Im VERY glad to see you stopped using those things!!! Those items could be why the PH in your mouth is thrown off so much you have thrush. By eliminating the poisons of alcohol and known cancer causing additives from tobacco use, your mouth will have a chance to heal on its own without all the unnecessary and negatively impactful influences causing further complications. Usually patients who had used alcohol and tobacco stop they will see a huge change in their mouths by 2 or 3 weeks. Please let this be your wake up call and permanently eliminate them from your life, they really are that bad for you. Its GREAT news that you have quit!!! Good luck!!!






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
Re: What questions to ask pathologist? [Re: ChristineB] #199624
12-21-2019 12:07 PM
12-21-2019 12:07 PM
Joined: Dec 2019
Posts: 19
J
Janey Offline OP
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Janey  Offline OP
Member
J

Joined: Dec 2019
Posts: 19
Christine, you've been so generous with writing all that you have written.

I thank you from the bottom of my heart.

Monday, I see my psychiatrist. You see, my first risk of early death is actually suicide. Second cancer. Third a vascular event. I really don't know how much fight I've got left in me, considering I am not without considerable mental challenges.

So far, I've called a crisis line and have told two friends and you all here on this forum. I haven't told family, as it's the holidays and my mother would crumble.

I'll write more tomorrow when I have more time and am alone; however, I will come back on tonight to see if there are responses to this thread.

Thank you ever so much!

Re: What questions to ask pathologist? [Re: Janey] #199625
12-21-2019 12:43 PM
12-21-2019 12:43 PM
Joined: Jun 2007
Posts: 10,495
PA
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ChristineB Offline
Administrator, Director of Patient Support Services
ChristineB  Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
C

Joined: Jun 2007
Posts: 10,495
PA
One word of advice....

RELAX!!!! smile

As I said before... oral cancer does NOT present itself as you described so theres a very good chance you are ok. Fingers crossed!!!

Try to stay busy reading a good book, watching a movie that holds your attention, start a hobby, do anything you enjoy or that will take your mind off the "what if..." way of thinking. As of this moment you do NOT have a cancer diagnosis!!! You do NOT know if anything is even wrong yet. By focusing so intently on all the infinite possibilities of what this might be if anything at all will make you physically ill. Nobody should worry about something they have absolutely NO control over. You have done everything possible to handle the situation and now its just a matter of waiting for the results. So right this minute you havent been diagnosed with anything serious so for now you do NOT need to ruin your day by worrying. Go out, enjoy your day, do something nice for yourself... a manicure?, play cards, read a book, enjoy your favorite restaurant go out with friends, go do things to make today into a great day. Right now you are ok!!! Ive learned how to avoid the what if way of thinking and I know everyone can at least attempt it as well. Worrying has NEVER helped anyone, its never changed a test result or helped do anything positive for any person... it only makes people upset creating a million scenarios that may happen. By over worrying you are making this soooo much harder than it needs to be. Ive seen hundreds come thru here who are as fearful as you are, some taking it even further planning their funerals when they arent even sick. Sounds kind of silly when you read it, huh? Thats what worrying does to people and its unnecessary so help yourself to focus only on what truly is within your control and do positive things you enjoy until your appointment date.

I strongly recommend taking someone along with you!!! With how worried you are right now when you do not have anything seriously diagnosed yet, Id bet your ears have a problem as soon as the doctor enters the exam room to give you the results. Thats from stress... it happens to everybody. Im NOT downplaying your fears or emotions or ignoring you are very upset.... I get it, Ive been there myself. I just know if I had to do any of the past 12 years over again Id kick myself in the butt for allowing myself to waste so much time worrying about things I had no control over and not out making memories with my children who were teenagers at the time. Too many serious health problems has turned me into a much more practical thinker.

Hang in there!!! You really will get thru this ... no matter what the results are.


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
Re: What questions to ask pathologist? [Re: ChristineB] #199626
12-21-2019 02:54 PM
12-21-2019 02:54 PM
Joined: Dec 2019
Posts: 19
J
Janey Offline OP
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Janey  Offline OP
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J

Joined: Dec 2019
Posts: 19
Thank you so much, Christine!

I needed a proverbially kick in my worrying butt.

Thank you!!

Re: What questions to ask pathologist? [Re: Janey] #199785
02-10-2020 04:11 PM
02-10-2020 04:11 PM
Joined: Dec 2019
Posts: 19
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Janey Offline OP
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Janey  Offline OP
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J

Joined: Dec 2019
Posts: 19
Just an update.

The mass which originally started as thrush, then candidiasis erythematous, due to psych-meds causing dry mouth AND due to smoking ...

Turns out it was precancerous.

I have to go back to the pathologist to have at least one other white spot on my tongue biopsied.

I pay for this out of pocket. Only if it is cancer do I get sent for gov't-covered care.

Honestly, I'd rather pay out of pocket, than to have it be cancer...

But what could it be? Dysplasia? Cancer?

I also asked her whether the dental gum recession is due to cancer of the bone, she said it's because of the dry mouth.

Re: What questions to ask pathologist? [Re: Janey] #199800
02-15-2020 04:51 AM
02-15-2020 04:51 AM
Joined: Dec 2019
Posts: 19
J
Janey Offline OP
Member
Janey  Offline OP
Member
J

Joined: Dec 2019
Posts: 19
Decided I better go back to the oral pathologist.

Not only do I have leukoplakia on the inner cheeks of my mouth, but there's a new bump on my tongue and I also have white sandpaper like patch on the roof of my mouth and it has an indentation.

The appointment is for this Thursday.

It's hard to keep my morale up...

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