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KristenS #198389 05-24-2019 05:50 AM
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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 ....

May2019 #198392 05-24-2019 08:45 AM
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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


Surgery 5/31/13
Tongue lesion, right side
SCC, HPV+, poorly differentiated
T1N0 based on biopsy and scan
Selective neck dissection 8/27/13, clear nodes
12/2/13 follow-up with concerns
12/3/13 biopsy, surgery, cancer returned
1/8/14 Port installed
PEG installed
Chemo and rads
2/14/14 halfway through carboplatin/taxotere and rads
March '14, Tx done, port out w/ complications, PEG out in June
2017: probable trigeminal neuralgia
Fall 2017: HBOT
Jan 18: oral surgery
May2019 #198393 05-24-2019 02:49 PM
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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!


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






PaulB #198395 05-24-2019 05:42 PM
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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

May2019 #198398 05-25-2019 05:05 AM
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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!!!






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
ChristineB #198399 05-25-2019 04:36 PM
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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

May2019 #198402 05-26-2019 07:07 AM
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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.


Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards

Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
May2019 #198403 05-26-2019 07:36 AM
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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.



May2019 #198404 05-26-2019 07:41 AM
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@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.

May2019 #198405 05-26-2019 08:31 AM
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@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.

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