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Diagnosed 3 weeks ago with Oral Cancer

Brian1
Posts: 2
Joined: Jul 2010

Not sure if this is the right place to be. but don't know where else to vent. It's on my toung they say it is malignant. I'm 58 years old, live in Canada. I'm scared They say they are going to cut part of my toung off . wow thats got me very worried. I'm feeling low , have no energy , the doctor isin't talking .

Pam M's picture
Pam M
Posts: 2194
Joined: Nov 2009

Brian,

Sorry you have cancer. Glad you found this site. There are lots of friendly, helpful people here - they really helped me a lot on my cancer "trip".

We have some people who are tongue cancer survivors on this site - some long term, too.

My cancer was a little different - I had base of tongue cancer, stage IV, diagnosed late October, finished treatments mid March.

Chances are whatever your treatment plan, there are people here who've gone through the same process - please feel free to ask any questions you may have, or simply vent when you need to (and we all need to sometimes, I think).

Do well - and keep us posted.

- Pam

Hal61's picture
Hal61
Posts: 656
Joined: Dec 2009

Hi Brian, sorry for your diagnosis. Know that everyone here is pulling for you. As Pam said, lots of tongue cancer survivors, and lots of care givers here. Most of the survivors had "malignant" tumors, that is the problem has, or can, spread. It's natural to feel low right now, it's also time to get your doctor talking.

Get him/her talking about treatment. The sooner you get some solid information, and a coordinated plan, the sooner you will feel better. This is the beginning of a well-traveled road Brian. Just believe that many here have been in your/our position and are willing to help you through it. Keep up your nutrition now, keep eating and drinking water, and get that treatment plan from your doc. Be your best advocate, and keep your spirits up. You've got friends here.

best, Hal61

MarineE5
Posts: 760
Joined: Dec 2005

Hi Brian1,

Yes, you have come to the right site and as mentioned above, there are many that have walked in your shoes already. So, ask away with your questions, and hopefully, we can answer them if your doctor isn't talking.

I had part of my tongue removed after I was told that I had base of tongue cancer. Yes, it is scary to say the least. Your mind is running as fast as a Race car and you are spinning out of control. Time to grab the wheel and take control. Write down you questions and present them to your Doctors. If they don't answer them, ask them to send you to someone that knows the answers. Find out the plan of action as mentioned already.

We will be able to explain what will happen as you prepare to go through this. You can do it as you will see,you are not alone. There are many of us here and we have done it, the road can be bumpy, but each person reacts differently to treatments. Some have a smoother time then others, some rougher. We will walk with you through this trying time.

My Best to You and Everyone Here

Skiffin16's picture
Skiffin16
Posts: 8100
Joined: Sep 2009

Welcome Brian, many here that can get you educated and up to speed....

This is a huge learning experience, and there are plenty here that have walked the road you are just starting.

You are not alone.

Best,
John

Scambuster's picture
Scambuster
Posts: 975
Joined: Nov 2009

Hi Brian, you have found one of the best places to be, here on CSN.

To give you a start, you might want to buy a decent Diary/notepad and start to record what's going. Use it for your appointments and to write down questions to ask your doctors, and answers as you may find it all a bit overwhelming at the start.

You may have had a PET CT scan to determine where your 'C' is located and they can usually 'stage it'. This information will help others here know of what level of treatment is involved.

In general, you have 3 methods of attack and not necessarily in this order but : 1. Surgery 2. Radiotherapy & 3. Chemo. There are a few different types of Radiotherapy where IMRT is preferred if available as it's more target specific. There are many different Chemo drugs and you Dr's will suggest the best cocktail if that is how they want deal with it.

You may wish to consider getting a second opinion if that option is open to Brian. Your Doctor not talking to you is not a great sign, you need one who can communicate with you. Don't be afraid to push them as it is your health, your body and your life they are dealing with.

Rally your family and friends to help you out where ever possible. It can be a bumpy ride, but you can get through this Brian. Stay strong and positive.

Get back on here whenever with your updates and questions and the crew will jump in and help guide you through.

Hang tight.
One of your new buddies.
Scambuster

Brian1
Posts: 2
Joined: Jul 2010

My doctor got back to me and told me that I'm going to have surgery but I just want to thank all of you for the coments I will be back. And let you all know when I find out more.

rozaroo
Posts: 667
Joined: Apr 2010

Best of luck with your surgery! This is a great site to belong to plus the support is wonderfull & everyone is so positive. I sure do appreciate all of the advice & experience
from everyone here.
Roz

Camilla_85
Posts: 2
Joined: Jul 2010

Hi Brian,

I came across your post and I have the perfect place to suggest for you. Have you been to the Oral Cancer Foundation's website? They have an online & free patient forum that can be accessed from their main site here: http://www.oralcancer.org Their online forum is basically a huge message board for people that have recently been diagnosed with oral cancer, are survivors from oral cancer, caregivers, family members, and friends. I know that you can sign up for a free profile and login anonymously too if you like. It's packed with information as well as the ability to speak with people that are going through the very exact thing as you are. Here is the direct link to register to the forum: http://oralcancerfoundation.org/forum/index.htm

I really think this will be a great place for you. I wish you the best and if there is anything you need Im sure that the people at the Oral Cancer Foundation can help you.

colinc1
Posts: 14
Joined: Jun 2010

Hi Brian

I am 9 days out of the operation theatre,for stage 2 cancer below the tongue,and am right now sitting up in the ward trying to eat with a spoon,very difficult,mouth & tongue still swollen,is not making it any easier,but i keep on trying,takes me about 1 hr to get maybe 4-5 tablespoons down, also very tiring on the jaws

My doctors never told me much either,that is the way it is in australias public health system,

Time to sleep,more strenght for tomorrow
Cheers
Colinc1

Pumakitty's picture
Pumakitty
Posts: 653
Joined: Mar 2010

Brian

This is the best place for support and advice. Please never hesitate to post anything concern you have. You will get the best advice. My dad just finshed chemo and rads for a tumor on his tongue. He did not have surgery, because the tumor was to large. This disscussion board was truly a blessing for my family. Please keep us posted.

Kathy

hawk711's picture
hawk711
Posts: 527
Joined: Jan 2010

Brian
This is a great site to seek information, support. I am 14 weeks past treatment and I read more than I write on this site, but everyone is so helpful and caring. Welcome!
To start, your doctor needs to talk to you. I'd get that second opinion and seek guidance from a good ENT doctor, radiologist and oncologist. In my opinion, the radiologist and ENT are the keys to handling this cancer and treating it.
I did not have surgery and had base of tongue cancer. Not sure where yours is located. Just go online, here, the web, cancer centers in your local area, everywhere to gain information. This is something we all know, that we have learned more about H&N cancer than we ever wanted to know, but it has helped to seek information and advice on this site.
My thoughts and prayers are with you as you enter this journey.
All the best, Steve

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