Posted By: Janey What questions to ask pathologist? - 12-21-2019 03:43 AM

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!

Posted By: Janey PS... What questions to ask pathologist?: - 12-21-2019 02:47 PM

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 ...

Posted By: tlc356 Re: What questions to ask pathologist? - 12-21-2019 03:38 PM
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.
Posted By: Janey Re: What questions to ask pathologist? - 12-21-2019 04:20 PM
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.
Posted By: ChristineB Re: What questions to ask pathologist? - 12-21-2019 06:03 PM
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!!!

Posted By: Janey Re: What questions to ask pathologist? - 12-21-2019 07:07 PM
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!
Posted By: ChristineB Re: What questions to ask pathologist? - 12-21-2019 07:43 PM
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.
Posted By: Janey Re: What questions to ask pathologist? - 12-21-2019 09:54 PM
Thank you so much, Christine!

I needed a proverbially kick in my worrying butt.

Thank you!!
Posted By: Janey Re: What questions to ask pathologist? - 02-10-2020 11:11 PM
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.
Posted By: Janey Re: What questions to ask pathologist? - 02-15-2020 11:51 AM
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...
Posted By: Janey Re: What questions to ask pathologist? - 02-15-2020 02:51 PM
I had a precancerous lesion removed from my tongue (over 1 cm and deep), but no recommendation as of yet for further treatment. I find this strange.

I'm also going back to the same oral pathologist this Thursday for 2 more biopsies at my request.

On Tuesday, I see my family doctor and will ask for a referral to an ENT and a lung scan. (Would a CT scan be the right one to ask for?)

I feel very alone and that I'm the one having to monitor and make arrangements for testing etc. Shouldn't it be the doctors?

Also, since the precancerous mass was candidiasis erythematous before it turned to precancer, I wonder whether the pathologist got all of it and whether I shouldn't be given fluconol and maybe radiation...

I also wonder if I haven't got cancer in my adenoids because food sometimes goes up the posterior nasal flap at the back of my soft upper palate.

Any feedback or encouragement would be welcome.

Thank you
Posted By: ChristineB Re: What questions to ask pathologist? - 02-16-2020 12:47 AM
All your questions sound like you are well prepared for your appointments.

What exactly did is the mass? A biopsy should get to the bottom of what the mass is. Pre-cancer is NOT what the majority of our members have... squamous cell carcinoma which can be a very aggressive or invasive cancer.

I know this is completely overwhelming to you. Since you already have a team of mental health professionals please reach out to them to help get you thru everything you are dealing with. The anxiety and depression can be debilitating for some people and it MUST be addressed to enable you to move past this health scare. We're ALL our own worst enemies and always hardest on judging ourselves. When feeling down reach out to your mental health professionals and try whatever techniques they suggest, it sure cant hurt. Same goes with meds... if it helps to make you feel better and enables you to deal with things then its worth a try. But it can be weeks before you notice any improvement which goes back to the mental health pros again to help you create a strategy for those low times. Another idea Im certain you would benefit from would be to find and join an online support group for mental health issues. Unfortunately without years of medical school, clinical patient experience, someones full medical history and the patient right in front of us to ask questions of (not that we have the proper knowledge or training anyway) its not possible to be able to help with this sort of thing.

To be completely honest with you... Most OCF members have been thru some horrendous things, their families have as well. Its not always easy for those of us here who have been thru cancer (some several times... Ive had it 3x myself and suffer from a great many physical challenges on a daily basis). Being forced to face real life and death situations makes it difficult to fully grasp everything someone who doesnt have cancer goes thru.with their much less serious medical issues. Im not trying to downplay your feelings or situation, Im sure what you are going thru is awful. Hopefully your mental health pros will be able to help you develop coping skills to better manage your mental health challenges.

I hope you can try to see your situation in a different perspective... you really are very, VERY fortunate!!! Everyone here who has been thru OC, treatments and a seemingly never ending recovery would trade places with you in a second for the opportunity to go back to how they were before cancer, even if its only for a day or a couple hours. I sure would!!! Id eat and eat and then eat some more of all my former favorite foods, desserts too. Its been so long since I went anywhere without being stared at every place I go. I forget what its like to be a regular healthy person instead of being disfigured and left with debilitating life long side/after effects.... I sure wouldnt waste one minute of being my whole self (before cancer) again Id go out in public and do all the things Im no longer able to do swimming, rock climbing/hiking, etc.

Hopefully you will see you really are a very fortunate person with so many positive things going for them. Focus on what is within your control and do your very best to avoid the negatives. Best wishes with all the tests and whatever else you have arranged to get to the bottom of your mouth issues.
I hope you are in a good place mentally and all the physical issues will resolve on their own.

Best wishes!!!
Posted By: Janey Re: What questions to ask pathologist? - 02-17-2020 03:29 PM
ChristineB, thank you so much for writing all that you did.

Firstly, let me say that I'm sorry you've had to go through all of what you have. You must be a very strong person. I felt great sadness upon reading all that you cannot now do, due to OC.

I apologize if it seems I'm making light of your situation and that of others by discussing precancer. That is not my intention.

I do have mental illness, I'm on 3 antidepressants and an antipsychotic and an antianxiolytic. The illness almost took my life on 2014. I cannot work now and I'm paying to see the oral pathologist. My health insurance doesn't have a good dental plan.

I'm scared that one more straw will break the camel's back.

I was hospitalized twice in 2019 for my mental illness.

I have a psychiatrist, a therapist, a mental health forum which I've joined and I also call the crisis line.

The worst for me now is that I feel so utterly guilty about having been a heavy smoker. I hate myself, but then tears come to my eyes when I say that as I was only trying to survive ironically ... I disregarded the warnings on the packages ... I was in deep denial.

My mouth is really dry due to the psych meds - this has caused the thrush (which is now gone) - but the oral pathologist has now prescribed pilocarpine to increase saliva.

When I last met her, I was the one who had to ask for the renewal of pilcarpine and she didn't tell me what's next, nor did she examine my mouth and head... she said for me to examine my mouth and I cannot do this as I'm too afraid, so I was supposed to see her in 6 months but instead contacted her to request 2 biopsies (side of tongue bump and roof of mouth indentation), so I will see her this Thursday. She did, however, give me the report which says the mass is :
Verriciform Leukoplakia, an oral precancer.

As I was saying partially in another post, my inner cheeks have leukoplakia, I have white patches on the sides of my tongue and there's a new bump on the side of my tongue which hurts so I was trying to stop the pain with orajel. And there's a large white patch on the roof of my mouth due to who knows what? But there's an indentation in it and the skin feels like sandpaper.

I really appreciate being a part of this group and hope you'll allow me to remain. I will endeavour to not speak so much about my mental illness and keep on topic about the state of my mouth.

Tomorrow, I see my gp and will ask for an ENT as some food now goes up in the back of the left nostril.

Any questions, I should ask my gp or oral pathologist would be welcome.

Thank you so much...
Posted By: Janey Re: What questions to ask pathologist? - 02-20-2020 01:14 PM
I really cannot talk much about my physical health without addressing my mental health.

I am very fortunate to have a good, kind oral pathologist, gp, psychiatrist and therapist in my corner.

I'll try not to take myself down ...

Try to sublimate my pain and challenges into something bigger than myself that can help others...

Saw gp, she's sending me for a swallow test....

Spoke to psychiatrist, we've raised my antipsychotic ... my mind is such that the fear has gripped me and I'm having strange thoughts.

Today, I will see the oral pathologist who is good and kind.

I shouldn't be so afraid, but I am.

I blame myself something awful... wish I were stronger ...
Posted By: Janey Re: What questions to ask pathologist? - 02-20-2020 11:06 PM
Well, I had another biopsy...

This time, inside near the gum/teeth where the hard and soft palates meet.

It's white, you see, and a "bump" near indentation was removed for analysis.

Results in 2 weeks ... hard to wait.

I really have a feeling it's squamous cell carcinoma - I looked at some pics online.

Anyhow, called the psychiatrist's office to see whether my appointment can be moved till the day after I get my results.

I wish you all strength and goodness...

I wonder if the SCC can spread to the lungs when it's in the mouth.... ???

I tend to overthink ... I am afraid ... yet somehow in denial still...
Posted By: ChristineB Re: What questions to ask pathologist? - 02-20-2020 11:43 PM
Its NOT cancer until the biopsy says it is. Do your best to think positive.

As far as trying to match what you see in your mouth with online photos... do yourself a favor and avoid comparing!!! The ONLY way to determine exactly what a spot, bump, lump, etc really is would be what you have already done... get a biopsy of the area. Online pictures dont always present a true picture of all the possibilities something could be other than cancer. Even the most experienced physicians after many years of formal medical education, clinical patient experience, spend years working with OC patients, etc are NOT able to determine what something is just by looking at it.

Since you already know your appointment for the biopsy results isnt for 2 weeks, theres lots of time to do positive productive things to pass the time. Staying as busy as possible is a big help when you're waiting for test results. We all understand just how difficult waiting can be. Hopefully the results come back as noncancerous.

Best wishes with everything!!!
Posted By: Janey Re: What questions to ask pathologist? - 02-20-2020 11:59 PM
Thanks a million, Christine, for responding will such kind and sensible words ...

I will do my best to keep busy during these 2 weeks ...

Thank you and many blessings to you!!
Posted By: Janey Re: What questions to ask pathologist? - 02-21-2020 02:14 PM
I just want to thank you all on this forum...

Thank you....
Posted By: Janey Re: What questions to ask pathologist? - 02-24-2020 04:38 PM
Today, I'm really not doing well.

The biopsy (roof of mouth) which was taken 4 days ago isn't healing well. In fact, it's opened wider and is gaping.

The pathologist said the sides of tongue "irritation" was due to dry mouth because of psych meds. I really do not believe this, I believe it is cancer.

I called the crisis line and spoke to a woman there telling her how hard it is to concentrate while waiting for results.

EDITED: I will take a dose of meds and sleep for a bit. I will try to be more positive. Thank you...
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