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Re: What questions to ask pathologist? [Re: Janey] #199802
02-15-2020 06:51 AM
02-15-2020 06:51 AM
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Janey Offline OP
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Janey  Offline OP
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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

Re: What questions to ask pathologist? [Re: Janey] #199805
02-15-2020 04:47 PM
02-15-2020 04:47 PM
Joined: Jun 2007
Posts: 10,499
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ChristineB Offline
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ChristineB  Offline
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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!!!


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] #199816
02-17-2020 07:29 AM
02-17-2020 07:29 AM
Joined: Dec 2019
Posts: 19
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Janey Offline OP
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Posts: 19
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...

Re: What questions to ask pathologist? [Re: Janey] #199825
02-20-2020 05:14 AM
02-20-2020 05:14 AM
Joined: Dec 2019
Posts: 19
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Janey Offline OP
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Janey  Offline OP
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Joined: Dec 2019
Posts: 19
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 ...

Re: What questions to ask pathologist? [Re: Janey] #199826
02-20-2020 03:06 PM
02-20-2020 03:06 PM
Joined: Dec 2019
Posts: 19
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Janey Offline OP
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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...

Re: What questions to ask pathologist? [Re: Janey] #199827
02-20-2020 03:43 PM
02-20-2020 03:43 PM
Joined: Jun 2007
Posts: 10,499
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ChristineB Offline
Administrator, Director of Patient Support Services
ChristineB  Offline
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Posts: 10,499
PA
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!!!


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] #199828
02-20-2020 03:59 PM
02-20-2020 03:59 PM
Joined: Dec 2019
Posts: 19
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Janey Offline OP
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Janey  Offline OP
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Posts: 19
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!!

Re: What questions to ask pathologist? [Re: Janey] #199830
02-21-2020 06:14 AM
02-21-2020 06:14 AM
Joined: Dec 2019
Posts: 19
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Janey Offline OP
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Janey  Offline OP
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Posts: 19
I just want to thank you all on this forum...

Thank you....

Re: What questions to ask pathologist? [Re: Janey] #199846
02-24-2020 08:38 AM
02-24-2020 08:38 AM
Joined: Dec 2019
Posts: 19
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Janey Offline OP
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Janey  Offline OP
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Posts: 19
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...

Last edited by Janey; 02-24-2020 08:58 AM.
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