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Confused and Heartbroken #197492
10-27-2018 06:03 AM
10-27-2018 06:03 AM
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Sarah84 Offline OP
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Sarah84  Offline OP
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While I was pregnant with my daughter I had a sore gum, and had a X-ray done that came back fine.

The area had full pain off and on for years that slowly became constant pain and now is quite a niggling burning pain.

We moved house and I think I went into denial as I assumed my tooth needed a filling but hate dentists so I let it go.

My daughter is turning 6 in a couple of weeks.

The pain got so bad that I tried to take a photo and realised there is a red sore there.

I went to the dentist and did some googling and now there are all these things running around in my head.

My health has been bad (dizziness, gums bleeding occasionally,exhaustion, low iron and ferritin, out of breath)and I’ve been doing a whole bunch of tests but for some reason I ignored this constant pain. I feel like an idiot.

And I was reading about long term survival rates rarely being over 5 years. I think I have been sick for 6. What does this mean in terms of staging? How fast does oral cancer grow?

Has anyone had something that looks like what I have? Is there any possibility it’s not cancer and could just be a disease that causes a sore other than cancer? The dentist was young and couldn’t tell me much and I have to wait to see the surgeon.

So much is going round in my head and all I can think about is leaving behind my daughters frown





Make life that heaven is earth ❤️
Re: Confused and Heartbroken [Re: Sarah84] #197493
10-27-2018 06:27 AM
10-27-2018 06:27 AM
Joined: Oct 2012
Posts: 1,083
Toronto, Canada
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gmcraft Online

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gmcraft  Online

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Toronto, Canada
Thank you for posting. Please do understand tat we ar a group of patients and caregivers; none of us has any medical training and we are unable to tell y if you deed have oral cancer or not. Even qualified oncologists will have to rely on biopsies and an examination to be able to answer your questions.

Our best bet at this point is to see and ENT who specializes in oral cancer and take it from there. There may be hundreds of possibilities and you are not doing yourself a favor by googling on the internet. You will not be able to get a definitive, reliable diagnosis that way. Please do what is best for yourself


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.
Re: Confused and Heartbroken [Re: Sarah84] #197494
10-27-2018 06:29 AM
10-27-2018 06:29 AM
Joined: Jun 2013
Posts: 317
alabama
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KristenS Offline
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KristenS  Offline
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alabama
We're all patients here, not doctors ... just folks who've been down that road and stuck around to help others. So no one is qualified to give medical advice. (Basically that means, you really need to see that surgeon for actual information.) That said, when I was doing my frantic-research days, I recall reading that the ones that hurt were less likely to be cancer and more likely to be some other benign but annoying issue. And if you've gotten this far and the pain has stayed at about the same level, maybe it's just one of those issues?

Most cancers they only talk about 5 year survival rates because they don't track patients past 5 years ... after that, they consider you cured or whatever. Some folks do get recurrences, but not everyone, with oral cancers ... and there are folks here who've been there, survived that. (I had a recurrence when I wasn't even one year out from my first diagnosis. Yikes. But hey, at least they caught it!)

The best advice you'll get to start with is, if this IS cancer you're dealing with, make sure you've got the best treatment center you can possibly find in your area (and if you have some worth traveling to, then do so). The better you tackle it up front, the less you have to fret about later. BUT ... right now, it's not cancer. It's not cancer till the doctor says it is, and till he does some sort of biopsy, there's not any information for him (or you) to work with ... they can't tell just by looking in your mouth. They've really got to look at the cells, bit by bit. None of us were even talking cancer when I went in for my first surgery ... I just had a sore that needed removing. (Yeah, I don't fit those stats about the painful ones not being cancer, sigh.) My surgeon went bit by bit and had the labs check every smidge he removed, till he got clear margins. I woke up after a rather longer procedure than expected, to find out that it was cancer ... but that he'd also been able to get the whole thing. We had follow-up tests later to make sure it hadn't spread elsewhere ... but for my first go-around, it really was that simple.

Anyway, ((hugs)) and you aren't alone, and get in to see that surgeon and get some information and reassurance as soon as you can! We'll all be here for you if you need us after all, okay? And hug those kids. Mine were a great support to me, even though they were also fairly young ... my second round was tougher, but we homeschool and they took full advantage of the extra time to watch lots and lots and lots of TV with Mom, or listen to favorite audiobooks, or watch more TV. We had a blast with that part of it, and it did bring us all closer together. (Who needs Spelling when you can watch Golden Girls, eh?)


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
Re: Confused and Heartbroken [Re: gmcraft] #197498
10-27-2018 01:59 PM
10-27-2018 01:59 PM
Joined: Oct 2018
Posts: 4
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Sarah84 Offline OP
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Sarah84  Offline OP
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Posts: 4
Thank you so much for your advice. I have been given a surgeon to contact on Monday so I will have to see how it all goes.


Make life that heaven is earth ❤️
Re: Confused and Heartbroken [Re: KristenS] #197499
10-27-2018 02:11 PM
10-27-2018 02:11 PM
Joined: Oct 2018
Posts: 4
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Sarah84 Offline OP
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Sarah84  Offline OP
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Posts: 4
Thank you so much for helping me put everything in perspective. You are so brave and inspiring.

The reviews of the surgeon I was referred to aren’t great so I might try to see my regular GP on Monday for a better referral.

May I ask how long you had the sore for before they operated?



Make life that heaven is earth ❤️
How long? #197500
10-27-2018 02:15 PM
10-27-2018 02:15 PM
Joined: Oct 2018
Posts: 4
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Sarah84 Offline OP
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Sarah84  Offline OP
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Posts: 4
I am in the process of currently investigating a possible oral cancer that may have been there a long time. I was just wondering how long you all had symptoms before you had the tumour treated? Do you think that this helped with beating the disease?

Is there anyone here who probably had it for 5 + years before treatment?


Make life that heaven is earth ❤️
Re: How long? [Re: Sarah84] #197503
10-27-2018 06:32 PM
10-27-2018 06:32 PM
Joined: Jun 2007
Posts: 10,303
PA
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ChristineB Offline

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ChristineB  Offline

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Joined: Jun 2007
Posts: 10,303
PA
Sarah, please do yourself a big favor and try your very best to stay calm and not get too far ahead of yourself. I know how scary it is to think you may have a serious illness. Facing your own mortality can be terrifying and I feel so bad you are going thru this right now. Just remember, everyone is always most afraid of the things they arent familiar with. Dr Google is NOT your friend for looking up oral cancer info! I admit I often google things myself but I avoid googling health related issues as I know theres far too many sites out there with bad and outdated medical info that could actually do more harm than good and hurt someone. OCF is the go-to website for anything/everything to do with OC. Im hoping your Dr Goole has just lead you down the wrong path and you got too far ahead of yourself. Hopefully all you have going on is an abscessed tooth which could cause intense pain if left untreated. Mouth pain can be horrendous!!! An infected tooth or gum area can also become a serious medical problem if not taken care of. As you have already found out, unfortunately most dentists do not treat or diagnose OC.

Often oral cancer (OC) patients do not have many symptoms. Who would ever think a slight cough, hoarseness or ear ache could be a sign of oral cancer? Many OC patients will also report they do not have any pain. Patients who have their tumor in the base of their tongue or tonsil area may not always have a tumor thats visible. Only thru a biopsy which is then reviewed by a pathologist can anyone determine if a tumor is cancerous. Its very possible for OC patients to go several months, sometimes seeing a few different doctors before receiving a diagnosis. There are many, many things people can have besides OC in their mouths, throats, etc. Most people will have different things from time to time come and go in their mouth without it ever being cancer or changing into cancer. The golden rule around here is 2 fold.... "Its NOT cancer until the biopsy says it is" and "any time someone has a sore, spot, bump, etc in their mouths for longer than 2 -3 weeks needs to be checked by a professional". By "professional" I mean an ENT who specializes in treating OC patients. An experienced ENT should be most familiar with not only OC but also other common mouth/throat issues that could be what you have going on.

Seeing a family doctor will not help you to get a diagnosis as many family doctors are not that familiar with oral cancer and they normally wouldnt even do a biopsy. Family docs treat things like bronchitis, flu, and other mainstream illnesses. Of course if you are going for a referral, thats then a necessary step. You may want to call your insurance company and check if its necessary.
For suspecting cancer, you definitely need to go to a specialist... the right specialist! Skipping the ENT and diagnosis to go directly to a surgeon before knowing what you have going on wouldnt be the best place to start either. You do NOT want something removed before you even know what it is... that would be a major mistake! A biopsy is what will tell you whats going on and then take it step by step to take care of fixing the situation. I really hope you have anything serious! But... having a chance of having a serious illness like cancer is enough that you do not want to waste time by seeing doctors who arent able to help you to get a diagnosis. Over the years, Ive seen this happen where patients are in a huge rush and will jump at the chance for a surgeon to remove something so its gone quickly. Instead of going step by step seeing the correct professional for a diagnosis then to get a treatment plan with oncologists they have something removed only to end up needing more surgery anyway due to the surgeon not getting clean margins.

Its doubtful anyone here has had a cancerous tumor for 5 or more years. Cancer thats untreated will grow out of control and turn into a terminal illness. Anyone who let cancer go for over 5 years probably wouldnt be around anymore or in a rare circumstance they would be very, very ill by now. Everyone is different and will have their own unique experiences including how quickly their cancer grew. This is true also for symptoms, reactions to medicines or procedures and healing. What one person complains of, another person may find its no big deal. These reasons are why its not possible to compare patients, symptoms, etc. Every single person is an individual and no two are every exactly alike. Take 10 patients who all appear to be the same on paper. These 10 people are all the same age, sex, height, weight, their tumors are all in the exact same location, same type of cancer, stage, length of time they've had symptoms, even their symptoms are the same. Plus they have the same blood types, live in the same neighborhood, same marital status and family size, same type of career, and even the same treatment plans. But every single one of those 10 people are still their own unique individual which means they will experience every single thing in their own unique way. Even adding in the exact same family histories will still make any comparison impossible. Try your best to not get too far ahead of yourself and avoid comparing your situation to others. Its not only unproductive, it doesnt work!

Staying busy will help to pass the time before you can find out what you have going on and how to fix it. The extra stress is NOT helpful to you or anyone else. So much stress only makes all of this so much harder than it needs to be. I learned a long time ago to control my "what if" thinking once I realized there was not one darn thing I could do to change my situation and how nothing was helped or improved by worrying. All that worrying and the "what if" thinking did for me was to make me more upset, unable to eat, sleep and it made me feel just overall horrible. "What if" thinking really can be controlled and please for your own good at least give it a couple things for me. Every time you start the "what if's..." give yourself a time limit (2-5 minutes) to ponder everything and then physically get up and "change the channel". What I mean by that is to get up and go do something positive that not only holds your attention but makes you think of other things instead of "what if". It really will help, Ive done this successfully many times as have others Ive shared it with. Its so difficult to pull your focus off the "what if's..." thats why its important to physically get up and go do something else try moving to another room. I used to clean out my closets and from there went to dressers then my kitchen pantry, kids dressers, etc. By the time I mastered my "what if" thinking, my house was spotless and I felt good having accomplished something I had been putting off for a long time.

Some of the things you read about here can be very frightening. Some members have been thru some gigantic hurdles and survived against highly impossible odds. We try to help each other to get thru some of the darkest days of our lives. Im really hoping you do not have cancer or anything serious going on! But, if it would turn out to be cancer then you are already in the very best place you could be for info and support. Maybe reading about oral cancer and learning more correct info about it will help you to feel more in control of your situation? The main OCF site has page after page that goes into great detail with up to date, correct medical info about anything and everything relating to oral cancer.

Hang in there, you will find out whats going on hopefully soon. Please let us know how you make out. Best wishes!!!

Main OCF site... Understanding section



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: How long? [Re: Sarah84] #197505
10-27-2018 07:53 PM
10-27-2018 07:53 PM
Joined: Jun 2013
Posts: 317
alabama
K
KristenS Offline
Platinum Member (300+ posts)
KristenS  Offline
Platinum Member (300+ posts)
K

Joined: Jun 2013
Posts: 317
alabama
Definitely dittoing everything Christine said! You asked how long I had my sore ... I noticed it around Christmas, but holidays being what they are, I just thought it was a cold sore or something and didn't think much about it. It was February before I went to my family doctor about it. He tried a couple things to get it to heal and then sent me to an ENT. The ENT tried a couple things and then decided that removing the sore to give the area a fresh chance to heal was the best plan of action. My ENT is a decent surgeon and does have experience with cancer, which is why (even though we weren't talking cancer) he biopsied every bit that was removed while I was still out. That was in May of that year. It was quite startling, as I mentioned. But we didn't skip any steps ... I started with my (very reliable) family doctor, got a referral, and was lucky to get an ENT who knew more than I realized. I don't know if the biopsies are standard procedure, or he was just good at his job. If you do go to that surgeon, see that biopsies are part of the procedure. Then you won't have to worry, after ... you'll KNOW and then you'll (hopefully) be done with it.


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

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