Previous Thread
Next Thread
Print Thread
Page 1 of 4 1 2 3 4
Joined: Feb 2018
Posts: 12
Member
OP Offline
Member

Joined: Feb 2018
Posts: 12
Hello everyone,
I've decided to sign up to this forum in advance to getting my results this Monday.I'm a 33 year old male.I don't really know a lot about any cancer's as such as non of my family have suffered with it(luckily).I have been reading people's stories on forums of their symptoms of floor of the mouth cancer and I fear the worst because it sounds exactly like what I'm dealing with at the moment.Nothing is confirmed that it is that but I'm so scared!!

Last summer I separated with my wife.I used to drink alcohol daily until the split up..Since I stopped I noticed what I thought was a ulcer ..I didn't think anything of it until it wouldn't heal or go away.And now I have left it that long that it's all on the one side of my tounge.Have a pain in my neck,ringing in ear.I can hardly eat due to it.and have lost loads of weight.I will have results this coming Monday and wondered if anybody on here had similar symptoms as I'm so scared I don't know what to do about it..I'm so stressed.And yes I do smoke cigarettes,I need to stop but can't with all the stress going on :-(

Can anyone shed some light for me?

Hope to speak to people soon..
Tia ,
Tom

Joined: Jun 2007
Posts: 10,507
Likes: 6
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,507
Likes: 6
Welcome to OCF, Tom! We can help you with info and moral support.

Hopefully your results are negative. You didnt mention getting a biopsy but it sounds like thats where you are at. The longest wait in the world is when you are waiting for test results. First let me explain .... everyone is different and will respond to things in their own unique way. That goes for diseases, symptoms, medical treatments, medication, etc. Even taking 2 people who are the same age, sex, from the same general area, have the same diagnosis with the same size tumor in the same location and each one can have drastically different experiences. If another member has similar symptoms that does not mean what you have is oral cancer. Ive been thru this 3 times and have had far more biopsies (where I was certain I was sick again) that came back negative. Hopefully yours will be negative!!!

Symptoms can vary greatly for oral cancer patients. Some have ear pain, others dont, some difficulty swallowing others dont, some experience ear pain others dont. Some patients have a tumor visible where others cant see their tumor (base of tongue tumors) and some patients have significant pain while others dont feel any pain at all. I had no symptoms at all other than a visible tumor and feeling lousy for weeks like I was on the verge of getting the flu.

If you can quit using tobacco in all forms it may give your mouth a chance to heal. Ive seen quite a few people come thru here who smoked or used chewing tobacco. Once they stopped using it their "tumors" healed on their own. Tobacco has hundreds of proven cancer causing additives which can play a big part in delaying healing in any sores someone would have in their mouth. Im glad to see you arent drinking as that can play a part in delaying healing in your mouth too.

As far as smoking goes, please let this be your wake-up call and quit ASAP!!! I want to explain a little of my history to give you a different perspective. I am a former smoker so I do completely understand the stress you are going thru. I wasnt able to quit immediately when I was diagnosed. I felt overwhelmed by the thought of having cancer, no one in my family had cancer so back then I was quite ignorant about what a cancer diagnosis meant. It was on my way to the hospital for a feeding tube consult as I was reaching for a cigarette when the lightbulb went on. I realized I had done this to myself and now I could leave my children alone. At the time my kids were teenagers, luckily they werent young children but they still depended on me for almost everything. I picked up my pack of cigarettes and was about to light one when I finally understood what those cigarettes had done to me. My son was with me and I said to him... "Thats it, I quit!!!, I will never smoke another cigarette in my life". I threw the pack right out the window (I never litter either) and told my son I now know how I will die but I'll be damned if I make it any earlier than it has to be. He looked doubtful as he said "I hope you really do quit". That moment is etched in my mind. Every time I thought it wont hurt to have just one cigarette I thought of it as another nail in my coffin and less time my children had their mother. Quitting is NOT easy. Smokers must decide they really want to quit more than they want to smoke. Nobody can nag anyone into quitting. Please do your best to learn from this and try your very best to decide you want to quit. Im one of the lucky ones who have gotten thru oral cancer 3 times. But (there always has to be a but)... I have paid a huge price for my "habit". Ive lost half of my lower jaw, all my teeth, cant eat hardly anything, depend a feeding tube for over 10 years, and endured intense pain and days where Im very, very sick and of course I lost my looks.... all from smoking which was a choice, a very bad choice I made.

Im sorry if it sounds like Im nagging you about smoking. Im not trying to nag you. I dont want to see anyone else have oral cancer which in many cases is preventable.

Please let us know how you make out with your biopsy. 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
Joined: Feb 2018
Posts: 12
Member
OP Offline
Member

Joined: Feb 2018
Posts: 12
Hi Christineb,
Thank you ever so much for the in depth reply,and let me say I'm sorry you have had to fight through oral cancer three times let alone once.I applaud you for being here giving people like me advise!it's very much appreciated. So glad you fought it off each time. And sorry if I wasn't very clear in my first message.I have had a biopsy yeah,and I go back to the hospital on Monday to finally find out what it actually is. I keep on seeing pictures on cigarette packets that I'm still buying of a type of mouth cancer and I'm sure it a sign telling me to stop buying these stupid cigarettes because my own mouth looks so similar to the picture on the packet. Ah I see,that I didn't know about with there being so many different types of the sane thing.. Yeah I've completely stopped drinking altogether and had no idea how big the risk factor was just from drinking alcohol. I thought about trying the vape pipes out but don't think that will be any better for my mouth at this point.I have had issues with drugs in the past and know that you have to really,really want to stop before even trying, which is why I'm still smoking at the minute. But come Mmonday I think that will all change for me as I do fear the worst. I do have a picture of my mouth but think it may be to graphic and not sure it's actually allowed. I will post back what happens on Monday. Wish me luck,thanks again for being so kind

Tom

Joined: Jun 2007
Posts: 10,507
Likes: 6
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,507
Likes: 6
Thank you for not posting your photo. Since our members do not have medical training, looking at photos would not tell us anything you havent already. Even doctors with years of schooling and clinical patient experience are only giving a guess when they look at a sore, lump, bump, etc. Of course the physicians guess is an educated guess, its still only a guess. Only the biopsy will determine for certain exactly what the lump, bump, sore is.

Waiting is the worst!!! Try staying super busy doing positive things to help pass the time. Whenever you find yourself dwelling on the "what if's" only allow a few inutes then physically get up and "change the channel". Go do something positive that will keep your attention so you dont continually agonize over the test results. Remember, worrying has never changed a test result or helped anyone to feel better. All it does is make you upset. Stress like this is detrimental to the patient and can alter their perception of their medical condition. I used to clean out my closets and dressers whenever I started to "go there".

I really recommend to NOT do vaping. Studies have been proven that many of the one that claim to not have nicotine actually do have it. The e-cigs havent been around long enough for any long term studies on the effects of using them. Best thing is to completely avoid all forms of tobacco. No matter what the results of your test are, please do your best to eliminate tobacco from your life. Quitting is a change that will help you have a much healthier and longer life. Continuing to smoke or use tobacco will eventually cause you health problems. There are millions of people in the US who are living with life changing preventable medical issues from using tobacco. One of the things Ive done since going thru cancer caused by my smoking is to do presentations at schools, talking to children from 3rd grade thru college. Ive talked to thousands of kids and hopefully have made in difference in some of their lives. Hopefully by talking to them in person will help them to understand the dangers of tobacco. If they dont start then they dont have to quit. Sorry about rambling on about smoking, again! I wish you all the best when you are ready to try quitting. Its not easy but if you make up your mind to do it, you will succeed.


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
Joined: Feb 2018
Posts: 12
Member
OP Offline
Member

Joined: Feb 2018
Posts: 12
Update.

Just got back from hospital for biopsy results and it is mouth cancer.I have a CT scan tomorrow then talk through plans next monday.I can't do this,I haven't got the strength..

Joined: Jun 2013
Posts: 346
Likes: 3
Platinum Member (300+ posts)
Offline
Platinum Member (300+ posts)

Joined: Jun 2013
Posts: 346
Likes: 3
You CAN do this.

I don't know much, but I do know this.

You can do this.

I got to this road by who knows what ... no smoking, no alcohol, no known risk factors at all. But we all end up on these forums the same way ... we get that biopsy and get scared. And somehow we get through it.

Breathe deep and go eat your favorite ice cream. No known cancer factors there, and the cool at least helps the pain. smile


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
Joined: Oct 2012
Posts: 1,275
Likes: 7
Assistant Admin
Patient Advocate (1000+ posts)
Offline
Assistant Admin
Patient Advocate (1000+ posts)

Joined: Oct 2012
Posts: 1,275
Likes: 7
Sorry that it’s not the news you were hoping to get, but you don’t know yet what the treatment plan is, if it’s going to be surgery, radiation, chemo, or a combination. There is nothing yet for you to take hold of, learn about and prepare for. I can understand how this is fear-inducing. Once you have your treatment plan, I would encourage you to focus on what you can control, which is to learn as much as you can about your condition and treatment, line up support for yourself at home and to focus on your intake. It will be an uphill climb but you will be able to take it one step at the time. If you apply yourself to that, things will seem more manageable and you will feel more in control. Make “I can do it” your mantra.


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.
Joined: Jun 2007
Posts: 10,507
Likes: 6
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,507
Likes: 6
Tom, Im very sorry you were diagnosed with OC! I know its shocking even if you anticipated getting bad news. One the positive side, you've already found our site. We're in your corner and will do our best to help get you thru this as easy as possible.

Take a deep breath and take this one step at a time, one day at a time. Focus on what is within your control. Start trying to push yourself to eat more to gain back the weight you've recently lost. You will want to eat all your favorite foods, desserts too before you get treatments. I know you probably dont feel much like eating but this is something positive you can do to help you to get thru it. You are young which is a big advantage too. The younger the patient is, the quicker their body can bounce back.

Your next few weeks will be a flurry of appointments. Your doctor will need more tests to determine what stage you're at and develop a treatment plan. Im not sure where you are located. If you can get a second opinion at a Comprehensive Cancer Center (CCC), start making calls to set it up. CCC's are the best cancer facilities with top doctors who use a team based approach so all the specialists are on the same page.

There's a few things to keep in the back of your mind (like you needed more to think about right now!) as you begin getting set up to get your cancer treated. Sometime prior to starting any treatments you will want to get a thorough dental exam and any teeth that arent in the best shape needs to be addressed right away. You will also need a complete blood test including testosterone and thyroid levels. It may seem like its something minor but it really is very important to get your baseline numbers now so your doctors know what range is normal for you. Down the road its not possible to go back and get the levels so make certain you take care of this before any treatment begins. As you begin to tell people about your illness, most will ask what they can do to help you. Tell them when the time comes you will let them know. Write down every single people who offers assistance with all their contact info. You will need to line up at least one person to help get you thru this so start thinking of who you are comfortable with having take care of you. You will need help even if you are able to sail right thru any treatment without any major side effects, you'll still need some help. That was something I really struggled with and paid dearly for being so stubborn and independent.

I recommend reading posts here and also on the main OCF site to learn about your illness. Click on the OCF Website link on the bottom of any page. As you begin telling people, brace yourself for all kinds of unsolicited advice and tips (most of which are NOT correct medical advice for our type of cancer...usually its squamous cell carcinoma SCC) from well meaning friends and relatives. Seems like almost everyone out there knows tips from a co-workers relative who's aunt went thru it and they just must tell you about it. You'll hear some really way out there things you "must" do that will get rid of the cancer the "all-natural" way without going thru conventional treatments. Just smile and politely say thank you. Luckily you have us to lean on and we'll be honest and give you correct up-to-date medical info as much as we can. We're OC patients/survivors and caregivers we do not have medical backgrounds but we have learned first hand what info we relay to you. Only surgery and/or radiation with or without chemo is what will eliminate OC. There is not anything at this time that will be an easier, less invasive way to get rid of the cancer besides those options. Chemo alone will not eliminate it but it can help to shrink tumors and make the radiation more effective.

Im sorry if I threw too much info at you. Im just trying to help you to make it as easy as possible. Hang in there and please do your very best to avoid smoking.


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
Joined: Feb 2018
Posts: 6
Member
Offline
Member

Joined: Feb 2018
Posts: 6
Hey Tom,
I just wanted to tell you that yes you can do this, and you’ll be shocked at the strength you didn't know you had. I am also 33 and a year and a half ago was diagnosed with stage 4 base of tongue cancer. I did the chemo and radiation, and it sucked, but I’m fine now. One year cancer free. I know everyone’s experience is different, and every doctor is different, but here in the beginning stages just remember that they have to tell you all the terrible things that can possibly happen. Try to stay positive despite it. I know it all seems impossible now, but you can do this.

Joined: Feb 2018
Posts: 12
Member
OP Offline
Member

Joined: Feb 2018
Posts: 12
Is there anybody around to talk to?I need to ask something urgent!!

Page 1 of 4 1 2 3 4

Link Copied to Clipboard
Top Posters
ChristineB 10,507
davidcpa 8,311
Cheryld 5,260
EzJim 5,260
Brian Hill 4,912
Newest Members
Jina, VintageMel, rahul320, Sean916, Megm37
13,103 Registered Users
Forum Statistics
Forums23
Topics18,166
Posts196,921
Members13,103
Most Online458
Jan 16th, 2020
OCF Awards

Great Nonprofit OCF 2023 Charity Navigator OCF Guidestar Charity OCF

Powered by UBB.threads™ PHP Forum Software 7.7.5