What to say?

Posted By: May2019

What to say? - 05-07-2019 03:02 AM

Hello Everyone,

This is my first post. It's Monday night ...

Just received some serious news 3 days ago on Friday.

Went to see an oral pathologist,

She said I have Candida albicans and that it's very serious, I'm a very high risk for cancer is what she said.

We're treating the Candida for 3 times longer than she does for other patients.

My biopsy is scheduled for June 21st.

I also have leucoplakia.

Anyhow, I've so much to say but I'll try to keep it short,

She said on June 21st that we'll find Candida, or precancerous cells, or cancerous cells.

Those are the only 3 options.

Judging by the photos on the net, I'd say I have cancer.
Posted By: KristenS

Re: What to say? - 05-07-2019 03:18 AM

You can't tell by photos. Truly.

Only the biopsy can tell you for sure what it is. Till then, it's just the candida and the leukoplakia. Even expert doctors can't tell just by a look that something is cancer. They have to do biopsies and lab work.

I'd say try to calm down and wait for the biopsy, but I know that's a lot easier said than done. I *can* tell you that lots of folks come here with questions like yours, and then go away with perfectly fine biopsy results. Those of us who stick around here are the ones who had different results, and we stay so we can help people by sharing what helped us and what didn't. Just because there's lots of folks here doesn't mean you'll be joining the party. (Though if for some reason you do, it's a great support group.)

I would also ask, is it possible to get a test sooner? That's over a month away and that just seems kind of long. Doesn't help the anxiety much... and though you can't change results, you can at least see what you can do to help the anxiety.

((hugs)) and good luck!
Posted By: Vicky1

Re: What to say? - 05-07-2019 03:21 AM

Hi! I hope you get good news, but if you don't, remember there are things which can be done. My father had leucoplakia when I was very young. They used a laser to remove it from his mouth and that was that. He's had candida yeast infections, and those have been treated pretty easily with nystatin rinses. He also had the big C, and a recurrence, and has had three surgeries, chemo and radiation and is still here. Don't put the cart before the horse, and start thinking about the worst possible outcome, but know that no matter what you find out on June 21st (whoa, more than a month out for a biopsy?), there are options.
Posted By: May2019

Re: What to say? - 05-07-2019 03:29 AM

Thank you for responding, Kristen...

My mouth conditions are the perfect storm: dry due to meds, unclean due to depression (got periodontal disease to boot), most probable HPV exposure (had the DNA test below and it came out positive), hairy tongue also, 2-pack a day smoker, rum drinker.

I hope you're right that it could just be the Candida, but it was odd that she said I also have nodules, and said "oh, hard and soft palate involvement"...

Time will tell ...

She also wanted to contact my family doctor.

I'll see about getting an earlier biopsy. That's a good idea.
Posted By: May2019

Re: What to say? - 05-07-2019 03:33 AM

Thank you, Vicky...

I'm glad to know that your father is still here!

It's important not to put the cart before the horse, as you say,

And I gather that you, too, think I ought to push for an earlier biopsy date,

I will.
Posted By: ChristineB

Re: What to say? - 05-07-2019 10:32 AM

Welcome to OCF, May!

Im sorry you may have a need for our support! Hopefully everything you have currently going on does NOT include cancer!!! [b]**IF**[/b] (try not to get too far ahead of yourself.... IF is the biggest little word!!!) it does turn out you do have cancer you are in the very best place for info and support!!! You have so many things going on in your mouth right now all that together could be behind what the doc wants to biopsy.

Im sure you already know this .... smoking or using tobacco in any form eventually will give health problems and any smoker should quit smoking. Please let this health scare be your wake up call to eliminate all tobacco usage right away to give your mouth a chance to heal. I am a former smoker and that is why I have gone thru having oral cancer (OC) 3x in 3 years and have been forced to stop working and dramatically change my lifestyle to something that is slower paced to match my bodys now fragile and greatly weakened state after 3x OC, all the poison from chemo, too many surgeries to even count anymore, unable to eat, have swallowing problems and on top of that Ive lost all my teeth from radiation damage. Thats just me who had been in fairly decent shape when I was first diagnosed in 2007. If I continued to smoke I would NOT have survived! In fact, I shocked my doctors who all were almost completely positive I would not survive the 3rd OC in 2009. Im very VERY lucky to still be here and now I share things Ive picked up from being on the forum reading every single post for almost 12 years. By quitting tobacco you will give your mouth a fighting chance to heal. The same can be said about alcohol... stop drinking immediately!!! Tobacco and alcohol both are strong irritants to the sensitive mouth tissue. Anyone who has a mouth sore, spot, bump, lump etc in their mouth for 2 or 3 weeks and it does not heal on its own should be getting checked out by a specialist. An ENT who specializes in treating OC for most is a good choice of doctor. OC ENTs deal with OC more often than many other types of doctors so they are usually the most familiar with the numerous things that could happen inside a patients mouth. Biopsies are usually a 3 visit deal... first is your initial office visit and if necessary doc gives biopsy options, second visit is the biopsy and third is getting the results of the biopsy. Some doctors will call or email their patients the results but most will want the patient there in the office to discuss the next steps to heal whatever the biopsy determined.

Photos do NOT help to determine what is OC and what isnt. Ive gone thru page after page of photos of many various mouth sores some cancer others not. I was surprised to find even though I knew quite alot about OC and what I had gone thru its next to impossible look at something and tell exactly what it is. Even experienced doctors can only give a guess, an educated guess but its still just guessing until the biopsy says what it is. Theres many different things a mouth sore can be besides cancer. Hopefully yours is nothing serious!!! Ive included a link to our main OCF site where theres tons of info, this explains other noncancerous mouth lesions. Most mouth lesions are NOT cancerous. Hopefully that will help make your situation a little easier and help you to be less worried. Ive always found when I worry about something the more I learn about it and understand it the easier it is for me to manage it.


Main OCF Site, Understanding, Premalignant Lesions

Best wishes with everything!!! Please let us know how you make out with your biopsy results. Good luck!!!!


PS.... Just in case anyone doesnt know what Candida albicans is, per wikipedia...... Candida albicans is an opportunistic pathogenic yeast that is a common member of the human gut flora. It does not proliferate outside the human body. It is detected in the gastrointestinal tract and mouth in 40–60% of healthy adults. Around here we usually call Candida albicans.... thrush Thrush can be very painful and difficult to eliminate, especially with so many other conditions affecting the Ph in your mouth.

Posted By: Crystal J

Re: What to say? - 05-07-2019 02:57 PM

Hi May,

I am Stage III Head & neck and Oral cancer, and right now I have my 5th Recurrence. I am 1 year post Radiation treatments, and the day after Easter I found out about this latest tumor. My next surgery is May 14.

My oncologist was Surprised that this tumor was yet another of my Invasive squamous cell carcinomas, with Deep Positive Margins.

But it is!!!
And it doesn't look like photos I've seen....
No matter, it is what it is.
I also have a mass beside my vocal cords, that they are treating with Laser surgery, repeatedly.

If you look at my profile, you can see I've already been through hell, now More to come as we try to find what treatment to do next.

I have never smoked, I don't drink, and I am negative for HPV. Completely negative for it.

I strongly hope that all your biopsies are Clear.
Candida albicans is easy to treat, even chronically.
But you should stop drinking & smoking.
Just stop. Find a treatment program that works for you and do it for your health and future.

Crystal
Posted By: May2019

Re: What to say? - 05-09-2019 02:55 PM

Thank you everyone for writing. I really appreciate it.

I wish you healing energy on your journey.

I'll write more a bit later.
Posted By: May2019

Re: What to say? - 05-10-2019 08:50 PM

I'm afraid.

I want to respond to the 2 long posts above, but I am paralyzed.

Sorry ...
Posted By: KristenS

Re: What to say? - 05-10-2019 09:25 PM

Did you hear more, is that what's up? Or just fear in general?

Don't worry, we got ya! It's okay, we're here. Breathe deep.

If it IS thrush (candida, as someone pointed out), that stuff is nasty painful. Nursing moms and their babies get it all the time. Not fun. I recall getting that when I nursed ... more the baby got it, and I was being treated so it wouldn't get into my system and get out of hand ... but it IS treatable. It's also fairly common. Mine was a nursing situation, so I only know the breasts / babies' mouth treatments, which won't help you in the slightest, but I can at least offer you sympathy there. I can tell you that in the nursing sense, treating with antibiotics makes the candida worse (I was misdiagnosed with mastitis during part of it, and antibiotics are helpful for that), so be careful what you are prescribed while you clear this up. Or at least discuss with your doctor. (I mean, I'm talking a totally different body part, and it's a known possibility in that situation, but for a strictly oral issue, it might not matter so much.)

Were you able to ask for an earlier biopsy time? If you can't call (I get overwhelmed and can't do all my own self-advocacy sometimes), do you have a trusted friend or relative who can call for you?

And ((hugs)). You will get through this. Day by day. Minute by minute, if you have to.
Posted By: May2019

Re: What to say? - 05-24-2019 12:50 PM

Thank you so much for writing everybody.

I have been paralyzed .... unable to respond. Hopefully, I'll be able to respond to you all individually. That is my hope.

I got the biopsy moved from June 21st to today.

Yep, today I go in for the biopsy.

I already know I have cancer, really.

Now when I stick my tongue out it leans over to the right-hand side.

The candida has responded well to the antifungal medication, but now there are white spots on the sides of the tongue and the skin has become shiny.

Dear members on this board, I must confess to you that my severe depression (for which I also self-diagnosed the type and it was confirmed by doctors) has led me not only to thoughts of suicide but to asking the universe to take me. I feel like I brought on cancer to myself by myself. I feel so guilty. And I am so sorry. I wish I could take those thoughts back. I want to live a little longer in relatively good health. I feel I sinned. I am so sorry to self. I was so miserable with depression, I felt like life was just putting in time. I am so sorry to self. So, so sorry ....
Posted By: KristenS

Re: What to say? - 05-24-2019 03:45 PM

I'm glad you got your biopsy moved up. That will help.

You did NOT wish this on yourself. Maybe there were risk factors that could have been avoided, but nobody asks for cancer, and nobody deserves it. Please believe me. It's just one of the many random things that the universe throws at us, and we roll with it. And we're here to roll with you, if that's how things go down.

I've been in that dark place with depression. I've got a good therapist who's helped a lot. (And a good psychiatrist, but the therapist bears the brunt of it.) If you don't have one, it's worth finding one. You deserve that. You are worth that. You are worth fighting for.

Kristen
Posted By: PaulB

Re: What to say? - 05-24-2019 09:49 PM

May2019,

I agree with KristenS, that you should seek assistance with a counselor or therapist and or someone to talk with. Speaking here is a first step, but it may take more. Waiting is the worst, I can tell you that! Plus you’re waiting for a diagnosis, and the mind can travel, sometimes in the worst way.

Moving up the biopsy was a good move. I hate to wait, and would bypass many to get my results when in the past some doctors made you wait until you saw them. I have no patience for some things like waiting.

Good luck with your results!
Posted By: Crystal J

Re: What to say? - 05-25-2019 12:42 AM

Hi May2019,

I hope your results are benign, but no matter what-- you will have the Stregth to handle it !!

We can go through all sorts of physical challenges and still Survive.--- You can still make a Life for yourself, but you need to be of strong Mind.
I have permanent feeding tube. ... Cannot eat, whatsoever-- but I cook and bake for others and that brings me a lot of Joy!! I have hobbies...

You will be strong and get through this, no matter what happens.
You're not alone and if you need support and help-- ask your healthcare providers. There is all kinds of help and support-- from social workers to counselors to patient advocates and of course here at OCF too..

Best to you!

Crystal
Posted By: ChristineB

Re: What to say? - 05-25-2019 12:05 PM

May, how was your biopsy? Theres several ways to have them done. Ive had them all and am never sure of what the results will be until they come in, usually about a week later. Waiting is the WORST!!! Try your best to stay busy doing positive complex things to help pass the time. Its not easy to avoid thinking "what if..." but it is for your own good. None of us can predict biopsy results, not even doctors!!! They arent able to know for certain until the lab results come back.

Fortunately the majority of my biopsies were benign. The 2009 Stage IV biopsy was the one that shocked me the most, (even more than the original ones from 2007) as I felt absolutely wonderful. The day before I got my results, I went on a 25 mile bike ride with my son. I never imagined I was walking around with a ticking time bomb, Until you are given that positive for cancer diagnosis, please be kind to yourself. Even if you would have OC, it is NOT the end of the world. Theres thousands of people who have survived OC and gone on to live happy, productive lives.

At OCF, you have many friends all wishing the very best for you. It can be very lonely going thru the beginning stages of a cancer diagnosis. When you discovered our online public message board and made your first post, you joined our online family. Here, everyone understands what you are going thru and just how difficult it can be. Depression is very common with cancer patients. Unfortunately so is suicide. Too many good people have a hard time processing everything cancer patients go thru. Can you please do your something for your online family? PLEASE reach out to someone for help in dealing with everything you're going thru... PLEASE!!!!. You do not have to carry the weight of the world on your shoulders by yourself!!!! There may be other places for help in your area but here a couple things to help you below....


1.800.273.8255 ... US number, not sure if this will work in Canada

National Suicide Prevention website



PS... Please check in and let us know how you are doing. We're all waiting and hoping for good results with you. Hang in there!!!




Posted By: May2019

Re: What to say? - 05-25-2019 11:36 PM

Thank you all for your very kind words and sharing your stories. I'm amazed by your courage and strength wish I had half as much.

Today was a horrible day. Just horrible. I'd write more but just can't right now.

When you think others around you can be strong and supportive but just can't: you're left alone. But when the closest lash out, kick you when you're down, it's unbearable.

I spent most of the day in bed. No calls. I'm really sad.

Biopsy results in 2 weeks, June 7th. I have an appointment to see the oral pathologist in person to get the results.

I think she ought to have taken more samples (which she did by freezing and a blade then sutures) but at almost $400 per pop, not including lab work, maybe even she felt sorry for me.

I hope to share more of my story in the upcoming days or hours ...

And thank you all so much for sharing yours
Posted By: gmcraft

Re: What to say? - 05-26-2019 02:07 PM

I’m also from Canada and live in the Greater Toronto Area. I was surprised to hear that you had to pay for your biopsy. When my husband was in treatment, what I found most reassuring was that finance was not a problem as the government paid for almost everything. Was your biopsy done in a dental office and that’s why you had to pay? Your family doctor could have referred you to an ENT and it would have been free of charge.

The waiting game is hard. It is impossible to not dwell on it. However, you might use the time between now and getting the results to focus on what you enjoy doing. It could be taking walks, binge watch your favorite shows, heck, even straightening out your sock drawer so that you get a sense of achievement. Little things do count. I would also encourage you to speak to your family doctor about your condition and he/she can determine if medication is warranted, or a support group. My husband was on Prozac for years and he continued taking it all through his treatment.

Wishing you all the very best.
Posted By: May2019

Re: What to say? - 05-26-2019 02:36 PM

Here I am, about to reply to all of your posts.

One at a time:

@KristenS

In your first post, you write that I shouldn't jump to conclusions and to wait to see what the biopsy results are. You also mention that that is easier said than done. Well, I have jumped ahead. And I've got myself self-diagnosed with cancer. My first reaction was to refuse treatment and kill myself. Now I am starting to read about all of your stories and I must say I feel embarrassed to some degree. To all of you, I take my hat off with humility. How dare I conclude I have cancer when I am no doctor nor god?! I am so sorry that my depression is such that I've been looking for a way out either actively or passively.

By now, Kristen, you know that I did go for the biopsy sooner, on the 24th instead of June 21st, as you and others suggested it be better for my anxiety to get the answer sooner so I'll know where I stand.

I am crying and I have a popsicle to tend to myself as my nan used to tend to me when I was a little kid and got sick.

Thank you for suggesting that I breathe, Kristen. And I'm sorry you had painful candida when you nursed. Mine isn't so painful now that I've stopped trying to rip it out with a tongue scraper. It has infiltrated my tongue, and I'm upset with my family dentist for seeing this and not sending me to a specialist sooner. He saw the progression as I was going for teeth cleaning every 4 months. He just took photographs. Idiot! I know what you mean by not being able to advocate for yourself..... I knew deep down that I should be sent to a specialist.

I wish I had a bigger family and trusted friends who could help me, but it's just me and my mom. My closest friend is in Montreal where I used to live. She is available by phone.

I have been sorely let down by friends ... it's been hard since I moved back home to create any meaningful relationships. Two close childhood friends have abandoned me. Neither invited me out when I came home, yet both were there when I made the invite and gladly ate my food or were happy to have me pick up the restaurant bill. Not one said come over, let's go for a walk with the dog, or come over for a cup of coffee even. Damn them, they are not my friends now. The first one and I are no longer speaking; the second one, I told her about this and it's been 3 weeks since and not a peep. Good riddance, I say. I need to expel all anger-producing agents from my life and concentrate on all for which I have gratitude. This board and you all, most certainly, being amongst them.

Kristen, you said: "You did NOT wish this on yourself. Maybe there were risk factors that could have been avoided, but nobody asks for cancer, and nobody deserves it. Please believe me. It's just one of the many random things that the universe throws at us, and we roll with it. And we're here to roll with you, if that's how things go down." Thank you thank you thank you! I feel so guilty and responsible, though as one doctor said: I know, when you're not feeling well, that it's hard to make the right choices. Truthfully, I have been unwell in my mind (depression) for too many years to count.

I need to learn to love myself and be gentler with myself. How though?

I do have a psychiatrist and now a therapist/social worker who I'll see for the third time tomorrow. I do feel raised in her eyes. And I know my psych has got my back. He helped me get into hospital to stay twice for a total of 6 weeks this winter, as I visualized taking my own life and no longer being able to see the sun rise or set and bringing such tragedy to my mother. It also felt like my soul just wanted to leave my body....

Sorry this is so depressing, but I HAVE stopped smoking and drinking. So, that's a plus.


Posted By: May2019

Re: What to say? - 05-26-2019 02:41 PM

@Vicky1

As I think I mentioned, it's good to hear that your father is still here.

You're right about not putting the cart before the horse and assuming outcomes, even if it is cancer.

I had the biopsy of Friday, May24th, instead of June 21st. I called and there was a cancellation. I had to follow my gut to get one sooner.
Posted By: May2019

Re: What to say? - 05-26-2019 03:31 PM

@ChristineB

Thank you so much for sharing your story and it IS wonderful that you're still here AND contributing so much to help others.

I must admit that looking over your diagnosis/procedures at the bottom of your post that I din't understand most of it.

I appreciate that you included the link to non-cancerous lesions ... it is a very interesting read. My family dentist thought the leukoplakia could be frictional keratosis, but he was incorrect. He also saw the candida developing and really should've referred me to an oral pathologist right away, imo, not just eventually send me to a periodontist who then sent me to the oral pathologist. I am upset with my family dentist, actually, and I feel angry actually - am unsure how to proceed? Should I tell him my thoughts (if so, how)? Change dentists? What?

You say the an ENT who specializes in OC is the doctor I should be referred to.

What should I do? Should I wait to get the biopsy results on June 7th and then be referred, or should I go to my family doctor and try to be referred now?

One thing that is different, that I showed the oral pathologist on Friday, is the fact that my tongue leans to the right when I stick it out. This is not a good sign, imo, could mean nerve or neurological involvement, no?

The oral pathologist said it's due to dry mouth from my psych meds. I beg to differ, but said nothing. What should I have said or done? Should I have a second oral pathologist opinion or wait for the ENT?

You are right in saying that the biopsy is a 3 visit deal. I had the visual assessment, now the biopsy as of Friday May 24, then I will go to her office for the results on June 7th.

I am off all tobacco and booze - just wearing the nicotine patch. I was never a heavy boozer until my 2014 mental breakdown, and since then it's been on and off, but I definitely hear you when you say stay away from anything that irritates my mouth.

The oral patholgist prescribed my clotrimazole lozenges for the candida and it's responding, but in the interim of my initial May 3rd visit, white spots have appeared on the sides of my tongue. She biopsied one of them 2 days ago. I am to stop the clotrimazole for a week while I rinse with chlorhexidine gluconate, then back to the clotrimazole lozenge.

For the biopsy, she froze my tongue, used a scalpel and sutured my tongue afterwards.

Thank you, too, Christine for mentioning to fill my time with poitive things. Getting dirty in the garden has been helpful. Also having my cat. Interestingly, she started laying on top of my chest when I'm on my side about 3/4 a year ago ... my family doctor has registered me for a CT with dye scan for within the next 2 months.

I wonder whether I do have oral cancer and I wonder whether oral cancer is the primary place?

So many unanswered questions.

Thank you for the suicide hotline number, I'm not sure if it works in Canada, but can check. I can also go to the hospital emergency and tell them I was on the psych ward and I need to urgently be readmitted.

But, alas, I am an existentialist, too, and often wonder what's it all about???

Thank you for mentioning that many OC survivors go on to live good lives.

Gives me hope.
Posted By: May2019

Re: What to say? - 05-26-2019 03:36 PM

@PaulB

Thanks so much for responding. I do have a psychiatrist and now a therapist/social worker whom I'll be seeing tomorrow for the 3rd time.

I also have another woman I can call in Montreal to talk, if need be.

You're right about waiting though. It's tough. You've given me the idea to call/write the oral pathologist this week to see whether I can see her earlier for the results.

Will update this thread, accordingly.
Posted By: ChristineB

Re: What to say? - 05-26-2019 03:56 PM

Thanks for posting!!!

We are ALL in this together! Its not easy seeing it that way when you barely have any support close by. You have many here who are in your corner, waiting for your new posts and hoping to see biopsy returned as negative for cancer.

Please do your very best to remember.... right this minute you have NOT been diagnosed with oral cancer. By fast-forwarding your thinking to after getting a cancer diagnosis, you are 10 steps ahead of yourself. Focus instead more on today and everything you can control. I learned this when I had several biopsies and after about the 4th one being negative I began to realize I was making myself miserable worrying about something that wasnt even true. Start doing more positive things for yourself. Hiding in bed wont help you feel better about anything. Do something different even when you dont feel like it. Walk your dog, take a different route and talk to the people you encounter as they are outside doing yard work. I have met so many great neighbors who live all around me by being a little more social. Ive always been a bit quiet, preferring to listen and observe rather than to jump right in adding to an existing group conversation. By approaching people I didnt know while dog walking was a great way to meet lots of nice people. Its worth a shot!

Unfortunately, something strange happens to those people cancer patients have been close to when they learn of their diagnosis. Too often the ones we count on the most, are not able to deal with hearing someone has cancer... I dont know why they head for the hills but Ive seen it happen wayyyy too many times. Its happened to me and many others here as well. Maybe they just cant face their own mortality or they internalize someone else's cancer to worry for their own health??? I found there was such a huge wedge created by those who abandoned me that to this day, 12 years later we still do not talk. Ive accepted the fact I cant get past my hurt feelings and avoid those who let me down. Luckily there is something amazing that happens to those that arent the closest friends, somehow they step up and are there to help the patient with moral support. At some of my low points, I had co-workers I barely knew volunteering to help me in all kinds of ways. With a few of my closest allies disappearing, these kind people couldnt have timed their generous assistance better. Not yet having been diagnosed with cancer should help make it easier for you to be less concerned with those disappearing "friends". For right now, try to ignore the behavior of those you had been close with. Sometimes people close to us need time to process exactly what a cancer diagnosis or scare means to someone they love. One other thing about those who arent around after hearing the word "cancer" other peoples behavior is NOT something you can control. But, you can control how you react to it. They are the ones who are missing out on your friendship... it really is their loss, not yours!!! Its definitely a major challenge, but you can rise above the bad feelings of abandonment! You can see thru those absences they were only there for the good times. Try your best not to dwell on it, all it does is make you upset and angry. Doing positive things that benefit you will help to pass the time. Try to do positive things that help you to feel better about everything you have going on.

Ive been with OCF since I was first diagnosed with oral cancer (OC) in 2007... 12+ years! In that time Ive seen soooo many people join our family "knowing" they had cancer. This was before their biopsy was taken so they didnt really know if they were sick or not. OC is a rare disease. Back when I first joined this group, I had never even heard of it before. I was in my single mom bubble of work, kids, house/yard things. After being here for so many years Ive seen many come here who have jumped past everything and become overly upset worrying about dying. Almost every person who has been here because of negatively "knowing" they have OC has NOT had anything serious. Many have gotten a dysplasia diagnosis (which is NOT a pre-cancer!) or other easily cured ailment. Im relaying this info to you hoping you can use that to move past the despair to think more positive about your life. Every single person has value!!! Every person has good qualities and strengths. Find yours and focus on them. Maybe gardening, dog walking, painting your bedroom, making some small improvements to make the house a more pleasant environment or doing any task that brings you happiness to get past the depression. Whatever you enjoy doing and are good at can be a productive way to handle what you are dealing with. Since you already have different professionals to help get you thru the waiting and depression try to reach out to them asap. Maybe a simple medication change could be all you need to feel better? Here in the US, all doctors are available 24/7 with answering services taking messages and passing them along to the doc outside of regular office hours. That could be another big help to make that call. A 5 minute phone call could change everything!!

Believe it or not, you really are stronger than you think!!!! Have the very best day possible!!!!
Posted By: May2019

Re: What to say? - 05-26-2019 04:50 PM

@CrystalJ

Crystal, to you and to all the others, I am sorry that you have this.

It's incredible that you weren't a tobacco user or HPV-positive patient.

Thank you so much for hoping my biopsy is clear. Just got out of the psych hospital and was feeling better, looking forward to getting my life back on track, now this....

I HAVE stopped smoking and drinking now.

Crystal, there are no words ... I read your story abut all your tumours and sutures. You are indeed a fighter. I don't know how I'd cope. It's amazing that you say it's all DO-able!! Your confidence and fight humbles me deeply.

But, you do mention that you don't have depression and thank goodness you don't. It is a terrible spiritual trial.

I also have anxiety and some OCD thrown in so now I'm like, if I catch the phone on 2 rings then I don't have cancer, but if I catch it at 3 rings then I do have cancer... and stuff like that.

Here you are having a feeding tube, yet you bake and cook for others and it brings you joy! Hats off to you, really, keep going!!!!

Thank you for writing me...
Posted By: May2019

Re: What to say? - 05-26-2019 05:01 PM

@gmcraft

Yes, I'm in Canada, but was referred by my family dentist to a periodontist who, then referred me to an oral pathologist.

So, yes, the biopsy was done in a dental office and not at an ENT clinic.

When I see the oral pathologist, if she wants more samples, then maybe I should tell her to refer me to an ENT because I have poor dental insurance.

Glad to hear the prozac helped your husband. I used to take that, but it stopped working for me after several bouts of severe and prolonged depression. Now I'm on 3 different antidepressants, an antipsychotic, and an anxiolytic. They keep my mind together. I'd have taken my life before now, had it not been for the drugs and the extra support from healthcare workers like my psychiatrist.

Still, I'm going to see an alternative healer, this Wednesday. I'm also looking at ways to get my body to be alkaline not acidic.


And little things do count ... recently, I found out that getting dirty in the garden helps me.
Posted By: KristenS

Re: What to say? - 05-26-2019 08:46 PM

Hon, you are not depressing me ... I deal with depression too, and I know what you're talking about ... and sometimes you gotta get it out. I feel for you, for sure, but if you gotta talk, you talk.

It's a scary balance to self-advocate without self-diagnosing. You do have to be proactive, but Google isn't always your friend. Though Google does lead us to places like this! smile My recent medical frustration has been a broken hip. They had all sorts of theories about why I must have broken my hip (and bad advice they wrote in my medical chart, that really messed with my in-hospital treatment!), but there wasn't a whole lot of worry about actually fixing the hip, or telling me how to care for it after the surgery. You mentioned in a post that you disagree about a med side effect -- they were sure I'd fallen as a result of a med combination, and refused to let me have some of my long-term prescribed meds while in hospital (I had to argue for every dose of one, which you do NOT stop cold turkey! my psych had fits when he found out) when I'd really just gotten distracted the way moms do, saw a disaster about to happen, and went that way instead of watching my feet ... which then tripped over a pile of stuff that shouldn't have been where it was. Perfectly ordinary scenario. (And some good tae kwon do twist and roll so I wouldn't hit my head, which explains the landing on my hip, alas.) I've had to stay OFF Google because I don't want to know recovery statistics for elderly people and broken hips ... I'm not elderly, just chemo and radiation affected ... and all the stats are scary. But I'm healing. And at my second post-op appointment yesterday, he didn't rule out Tae Kwon Do in my future either, though probably no more serious sparring for me. (Which I am okay with. I'm a chicken. LOL.)

But without the experience from all this cancer nonsense, I wouldn't have even questioned as much as I did, during my stay. We learn. You're here. I hope you don't end up having to stay here, but if you do ... you'll have folks to help you know what questions to ask. You REALLY don't have to fret right now. You did the right thing by getting the biopsy done. That was AWESOME self-advocacy. Now is that waiting for the results time. After that is the time to either fight or throw yourself the biggest party ever. smile Right now, just hang in there.

KristenS
Posted By: May2019

Re: What to say? - 05-27-2019 10:12 PM

@ChristineB


Thank you so much for writing again, Christine. I’m so touched that you would take the time.

I wish I had the confidence and feel that I’m stronger than I think… this weekend, I had some trouble eating (due to nerves) and ended up sleeping a lot). Yet, you said, “Every person has good qualities and strengths. Find yours and focus on them.” I think that is very sage advice. Focus on that!! ‘Cause right now, I’m thinking a lot of bad things about myself “Coulda, woulda, shoulda” type of thing. Yes, what you say makes a lot of sense.

I didn’t know dysplasia was not a form of precancer. I honestly don’t know what to expect in terms of results. I guess I’ll just have to wait and see.

I did call my psychiatrist last week and he called in to the pharmacy to reduce one of my meds so that I can start producing my own saliva. I see him in person on Thursday, and will ask for a med change to another in the same class but that won’t dry the mouth as much.

I feel very badly about the candida having “entered” my tongue. The oral pathologist said it is very serious. So, it’s not yet cleared up, so if it does get cleared up, I suppose another biopsy is in order. Yet, as you say I’m getting 10 steps ahead of myself. I still can’t understand why my family dentist didn’t send me to a specialist earlier. Maybe he is not as educated as I would’ve thought.

Anyhow, enough of the negative …

You’re right about some people you’d never expect stepping up to the plate when least expected. I have you and all the folks on the forum who’ve written, and I can’t tell you what a difference it’s meant to me; also, 2 women from a group I belong to wrote with thoughts and prayers and they barely know me. It’s all been a blessing and I feel gratitude.

I’m very impressed by your inner strength and your positive attitude. Hope some of it rubs off on me.

Great to get out of yourself with the dog walking and meeting people. Funny, I was thinking of getting a dog. Right now, I have a cat and she’s great. She definitely wants to be the only cat in the home. We’ve had a few dog visitors and so long as they keep to themselves, she’s not phased. A real princess cat.

Pets are really wonderful: so unconditional in their love.
Posted By: May2019

Re: What to say? - 05-27-2019 10:28 PM

@KristenS

Thank you so much for writing, Kristen. It means a lot.

So, yes, you know about depression, eh?

Well, then you know it’s tough.

Luckily, I have a good team around me. Today, I saw the social worker/therapist. And she echoed not to get ahead of myself with worry, though easier said than done. Still it’s good to have it drilled into my head by her and by those on this board.

I’m very surprised to hear that docs would take you off your meds in hospital without consulting the prescribing psychiatrist. And, I’m very sorry to hear about your broken hip. Sending you healing energy to get well soon.

You’re right about Google not always being your friend. I guess it’s all about using it with discernment and some balance. Haha Not always things I’m noted for. But, in truth, you make a good point. Why drive ourselves silly with worry and dwell on that which we do not yet know.

There was a story about a woman, on the news, who was diagnosed with Stage 3 breast cancer and has lost her hair now through treatment, etc. She has got back to dancing and doesn’t Google anything. She goes for treatments and tries to be as happy as she can be. She’s also a mom.

I might very well need to take a page out of both your books and think of other things … tae kwon do, eh? That’s great!
Posted By: ChristineB

Re: What to say? - 05-28-2019 02:02 AM

Its 100% true that every single person has their own strengths and things they are smarter or better at than most others. Im sure you have many things you are good at. Focus on those positive things and what things make you happy. Nobody can turn back the clock and get a redo of all the shoulda coulda woulda things they wish had gone differently in their life. Things that have already happened are things we cant change. Focusing on things that cant be changed is unproductive and does nothing to help boost your spirits. Try to get involved in some hobbies doing things you enjoy. Maybe join a group or two. By joining some new organizations, you will meet new people who could turn out to be the greatest friends down the road.

When I was just starting out I made myself do positive things whenever I started to worry. I quickly realized worrying was never going to help anything, all it did was get me upset. I worried about things I had no control over which was completely illogical and a huge waste of my time. I started to limit how long I would think about those negative things. When I found myself "going there" I would set a timer for a few minutes and when it went off I forced myself to get up and go do something positive, something productive. I found by limiting my "what if" way of thinking was a huge help in making me feel better about my situation. If I can do it, I know you and others can too!!! Everybody can try doing the "what if" time limit and "change the channel" when times up. After the "what if" time was up, I worked on doing something positive. I cleaned out my closets one at a time and then moved on to dresser drawers, kitchen cabinets, pantry and thats as far as I got. Everybody worries, its very hard not to when facing potentially serious health conditions. But if you could train yourself over time to only allow so much time to devote to the "what if" worrying before you "change the channel" and physically get up to go do productive, positive things that hold your attention then I know you will be doing yourself a huge favor and you will feel alittle better about everything. Plus you get the satisfaction of a job well done by accomplishing things most people tend to put off. Im one who put those things off but doing my closets, dressers, kitchen cabinets, etc. really helped pull me thru some hard days that would have been spent worrying about something I had absolutely no control over.

I have faith in you and know you can move past this and take it day by day. Right now, you have NOT been diagnosed with anything. Since you quit smoking that will help to give your mouth time to heal so hopefully you will get a negative result from your biopsy. I know its NOT easy at all for you but this sort of thing isnt easy for most people. It can be very scary time when you are worrying you might have cancer. I really hope your results come back negative, with no sign of cancer. Take it day by day and do your very best to stay busy doing things that require complex thinking and concentration. Reading books that hold your interest or watching movies with good detailed plots that make you pay attention to follow along both are easy things to keep your mind entertained so you dont focus on worrying 24/7.

Just be kind to yourself in whatever you do in life. You really do deserve happiness and an easier life than what you currently have.
Posted By: KristenS

Re: What to say? - 05-28-2019 02:07 AM

Yeah, I've dealt with depression and a severe panic disorder for a couple decades now. It's been an interesting journey. I've had a good therapist for most of it, and varying levels of psychiatrists ... the one I have right now is decent. And very patient.

The best thing my therapist ever told me, in relation to suicidal thoughts, is that wishing I were dead wasn't the same as wishing to act upon it. Wanting to not be in pain wasn't the same as wanting to do something about it. I had been afraid to even discuss such feelings, for fear it'd be reported or something and I'd risk losing my kids ... but he helped me be okay with talking ... and that was a huge gift.

As for the hospital meds issue ... I'm not sure which doctor made the call, but somebody glanced at my chart without talking to me, decided I must have fallen because I was taking things that make you sedated / dizzy, and therefore declared I should no longer take such medications. They didn't talk to me to ask WHY the fall happened (which the nurses did), or if I'd had some of the related meds in recent days (I hadn't), or if the important one was something I'd taken regularly and long term (I do) ... so it was terrible advice. I did manage to convince one of my care nurses that I really did require my anxiety med regularly ... but when I could get her attention to get my meds, she wouldn't dispense it at the same time as the pain medication because of it maybe making me wobblier, so she kept postponing it, so my timing was ALL over the place. When seriously, the stuff I take for migraines is stronger than what they were giving me post-op for the hip. Sigh. The meds were NOT the issue. (Actually, besides my klutziness and distraction, I'd also been taking an antibiotic that can cause muscle pain and loose joints, so we think that contributed. As soon as I mentioned it in the ER, the nurses knew right away which one I was talking about. I'd already spoken to my family doctor because it was giving me trouble and we'd stopped my taking it, but the damage was done. But that didn't get to the notes the mystery doctor read, apparently.)

So ... self-advocacy. The funny thing was, I had the very meds I needed over in my purse, and if I'd wanted, I could have gotten them at any time ... but I felt it was more important for the nurses to be aware of what was in my system at any given point. That's probably the only thing that did keep me from completely panicking, because I had the option if I had to have it, so I waited and went through their system.

Tae kwon do, when I am well enough to tolerate it, is a sort of therapy for me. I'm ADD, and klutzy as all get out, but when I can manage to learn the forms, it can be nearly meditative. I can't just sit and meditate the way some people can, and the way my therapist wishes I could ... but I can focus on the movements and get in a sort of zen place that calms my brain when I master a form. I'm not strong, and I'm not great, but I do love it. I managed my higher belt ranks while finishing cancer treatments and then also when healing from a broken shoulder. (As I may have mentioned, I get points for spunk more than for actual ability to beat opponents.) I'm a second-dan black belt now, and hope to keep going. Chemo brain makes a lot of the memory work foggy for me, but it is still so much fun ... and I love cheering on my young friends in the studio, too. And they cheer me on, which is pretty cool. It was a lot easier when my husband was training, too, because he could help me study ... but maybe I can talk him back into it. Anyway, whatever hobby helps you chill, this is the time to enjoy it. smile (I took up sewing during chemo ... not big sewing, but sewing for my favorite 6" doll ... perfect for toting around ... the nurses had fun seeing what I was working on each week.)

Wow, that's a ramble!
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