Just introducing myself. Dave - 29yo.

Only last week found out my cancer had returned. Going through a rough patch right now. I got married June 09 after recovering from the first cancer. Greatest day of my life. Thought i was past it but as we all know, its a sneaky bugger and it snuck back up on me.

I previously had a stage 1-2 SCC on the left BOT. I was diagnosed on the 7/4/08. Surgery on the 7/20/08 and PEG in place for a couple of weeks with a piece of my forearm used to replace. (Forearm radial is it? Can't quite remember)

Went through radiation but no chemo.

Nearly two years to the day i finished radiation i noticed a lump on my tongue that has since been revealed as a stage 1-2 SCC. Possibly a different one as this one is well differentialed and the last one was poorly.

Right now I am waiting for surgery which will occur on monday. Same process as before.

I really wanted to post to say thankyou to the absolutely inspirational people on this forum that have lifted my spirits. I am the only person i know who has gone through this type of cancer and surgery and to find others is fantastic. I will endeavour to post here as often as i can. Surgery will probably remove most of what's left of my tongue but i figure its a very very small price to pay.

I'll update my sig once i figure out the abbreviations etc.

Cheers and thanks for reading,
Dave

We will be praying for successful surgery and a speedy recovery. Will you have to have Chemo this time?

Dave,
Just read your post and want you to know I will say a prayer for you and hope everything turns out okay. By reading the other posts on this forum, you know you are not alone. Cancer sucks, especially oral cancer, where it leaves it's ugly mark on us to the point of not even being able to eat and some not even being able to talk. Please keep in touch with us. I pray that your surgery and treatment will be a success.
julieann

Dave, welcome to OCF. You will find several Australian members. Wishing you the very best of luck with your upcoming surgery.

Hi and welcome from a fellow Aussie Dave,
As Christine says there a quite a few of us here. Is your hospital in Brisbane?
I am so sorry to hear that you are going through this for the 2nd time. As you can see by my signature I had much the same as your first operation.
The very best of luck with the upcoming surgery on Monday.
I searched on abbreviations and found a list that Mark a Patient Advocate (1000+ posts) had posted a while ago.
It is a very comprehensive list.
Please post again if you have questions before surgery and after.
Cheers
Gabriele

Abbreviations and definitions for common terms.

We all use abbreviations here and new-comers sometimes have a hard time understanding them.
SCC - Squamous Cell Carcinoma
Dx - Diagnosis
Rx - Prescription
Tx - Therapy? Treatment?
BOT - Base of tongue
PEG - Percutaneous Endoscopic Gastrostomy aka feeding tube

http://www.oralcancerfoundation.org/dental/tube_feeding.htm

HPV - Human papillomavirus
rad - radiation
ENT - Ear, nose, throat Doctor aka Otolaryngologist
Glossectomy - Removal of tongue
Metastasis - Spreading of the cancer
XRT - Conventional external beam radiation therapy aka EBT
IMRT - Intensity modulated radiation therapy

http://www.oralcancerfoundation.org/facts/imrt_radiation.htm

PET - Positron emission tomography scan
CT/CAT - Co-axial tomography scan
EBT - External beam radiation therapy aka XRT
OCF - Oral Cancer Foundation
NCI - National Cancer Institute, a sub division of the National Institutes of Health
CCC - Comprehensive cancer center or clinic; A tumor board at a cancer center will include doctors trained in different disciplines. Having your case presented and evaluated by this type of multidisciplinary team will give you the best options for treatment, considering all possibilities from their different areas of expertise.


HBO - Hyper-baric oxygen Patient given oxygen under pressure prior to dental surgery.
Stage - Development of the cancer

http://www.oralcancerfoundation.org/facts/stages_cancer.htm

TNM - System for describing the cancer

http://www.oralcancerfoundation.org/facts/stages_cancer.htm

NCCN - National Comprehensive Cancer Network (an alliance of 20 leading comprehensive cancer centers).

http://www.oralcancerfoundation.org/treatment/pdf/head-and-neck.pdf

Margins - Refers to the margins of biopsied tissue; clean margins indicate that all the visible cancerous cells were removed.
Biopsy - Removal of sample or whole of suspect tissue

http://www.oralcancerfoundation.org/facts/detailed_biopsy.htm

Xerostomia - Dry mouth resulting from reduced or absent saliva flow
RO - Radiological oncologist
MO - Medical oncologist
DO - Dental oncologist

[quote=wheels]We will be praying for successful surgery and a speedy recovery. Will you have to have Chemo this time? [/quote]

Sharon, my doctors say that chemo is often done in conjunction with radiation. I have radiation before and apparently its rare for it to occur for a second time in the same area on the body. They're going to have a look at the tumour once removed and make a decision around then.

At least it hasn't spread. Docs are saying they're pretty sure it hasn't gone to the lymph nodes but they are going to remove them and check anyway. Pretty much like last time

To Gabe, yes, I'm in Brisbane Private hospital. I'm fortunate to have my wife and all my family in Brisbane.

Thanks again for reading,

Hi David

Alex and I are in Sydney and wish you the best of luck for your upcoming surgery. This is a great site for exploring options and figuring out the questions BEFORE you get in front of the doctor rather than 3am the next morning. Support is excellent too from both survivors and co-survivors.

Alex had slightly left of standard treatment because his tumours were unresectable. We had "induction" chemotherapy which just means they used chemo as a means of shrinking the tumour before they rolled out the big guns. Chemoradiation (the big guns) followed 4 weeks later. We were lucky that the result of the chemo was actually a "complete response" (no evidence of tumour on PET scan) so with any luck, the chemoradiation pulverised any errant microscopic remnants. We look forward to stressing about whether or not our superannuation will save us from selling the house and moving into the gutter with our other poorly prepared friends

Karen

Dave,

You say the 1st time it was BOT primary but you said you had surgery. What surgery was done for BOT primary?

If they are not sure about a nodal involvement why are they going to do a ND? Did they radiate that area the 1st time?

Were your slides ever tested for HPV?

Chemo alone is not a cure for this type of cancer. You are correct in knowing it is given with radiation. There are a couple people here who have gone thru radiation twice.

Gabe...Excellent post!!!!! You really got a ton of important info compiled into one post.

Dave, my thoughts are with you. Sounds as if you have a good team in place, both medically and personally.

We're all pulling for you!

David 2

Dave best of luck for the upcoming surgery and a speedy recovery.This is a great forum with such optimistic and inspirational people, that I just discovered. I am new here myself.

All the best ! roma

Watch out folks, the Davids are taking over. Welcome Dave and best of luck with your treatments. Out of curiosity, is the name of your town pronounced like "Kid"?

David R.
The Qld stands for Queensland a state of Australia
They capital city of Qld is Brisbane where Dave P is from
Many times I have had to go to a list to work out your abbreviations in the US.
Not only do we come here to support each other and ask questions re OC we also get a bit of a geography lesson
Gabriele

[quote=davidcpa]Dave,

You say the 1st time it was BOT primary but you said you had surgery. What surgery was done for BOT primary?

If they are not sure about a nodal involvement why are they going to do a ND? Did they radiate that area the 1st time?

Were your slides ever tested for HPV? [/quote]

They simply cut it out with margins and replaced it with a forearm flap. I then had radiation on the flap area through the ND - just to be sure they said. I had a ND during surgery and the nodes came up clean. They're doing the same process again it seems.

They're saying that since i'm young, they want to be aggressive in the treatment.

And the first cancer was HPV negative. Not sure on this one yet.

For years now I have listed another cause of oral cancer and that is.....The Name David

Man there are a lot of us named David that have come to this site!!!

Dave,

I wish you the best and I hope you have a speedy recovery.

Benfry

Hi Dave,

Good luck on Monday, from another Sydney-ite.

My husband was from Brizzy and I've been there quite a few times, actually we were married in Caboolture! (His mates moved back to Brizzy a few years back, as they learned there ain't no money in Rock'n'roll, and got real jobs!)

Cheers!
Tizz

Thanks for that geography lesson, Gabe. I was reading that as Qid. Have to get this cataract dealt with.

Hey Dave,

I hope things work out for the better, I am not even through my treatment yet and kill myself many of times about it coming back. I think you are the real inspiration.

Your Friend,
Nathan

Welcome to OCF David. So sorry to hear that this monster has returned, it sounds like your spirits are up and you are ready to win this battle again.

I'll be praying for you Monday, hope your surgery goes smooth and recovery is fast.

Out of hospital!

Two weeks in hospital with about 4 days in ICU and then the rest in the ward recovering and trying to feed myself to prove to the nurses to set me free...

Surgery went really well. They had to take a bit more of my tongue than they were hoping but i still have the back third which does the swallowing. So happy with that. Put a bit of my stomach muscle in my mouth to act as bulk and assist with eating and speaking. I can speak but have trouble with a few letters but it is really early days yet.

Doc said the nodes in the ND were all clear and some of the "cancer" on the MRI wasn't actually cancer. So that was good news.

No word on rads and chemo yet, will find out soon. But stoked to be out of hospital. Thats the worse bit in my opinion. Rads is ok, least i get to go home every day. Pain i can handle, depression - which i get from hospital stays - i struggle with.

A thank you to all the well wishes.

Glad surgery went well, now you probably have no lymph nodes left now that they have been removed twice, .

Hoping they are satisfied with surgery and that you don't have to go through more radiation or chemo!!

If so, ur a trooper, and already know what it's like, so just fight hard!!

I myself am going through a reoccurance scare right now!!

Hoping for the best for both of us.

Strange that they can pull ur stomach muscle and move to ur mouth, but that makes me feel a bit more at ease. Already had the right half of my tongue removed, and one of the positive areas is my tongue, so i got pretty nervous about that, as i am only 26 and don't know if i could live the rest of my life without being able to eat/talk again. So that gives me a little hope.

Glad you are out of the hospital and at home!! Feels so much better to be home!!

So, do you live near where lost supposedly happened, hahaha, i kid.

Stay strong and fight the good fight!!

David,
I love your positivity and the fight you are making to get better! Keep it up!

That's great.

Great to hear, David. Wishing you the very best, please keep us posted.

yet another david

David well done on showing those nurses you can take care of yourself, they can be a tough crowd to play to!!

I have my fingers and toes crossed for you BIGTIME and will keep you in my prayers for a clean bill.

David, Rock on!!!

Light and blessings.

David, Great job getting through this. Way to stay positive!! Keep us posted. We're here for you.

Great to hear that the surgery went well and you are now out of hospital David. I also hope that you can escape the chemo and rads as I did. Now you need a ton of patience with the healing.
My problem is and was with the letter "s" and I guess with time they will tee up the speech therapy for you.
Now that you have been sprung from the hospital enjoy the upcoming spring and summer while your body(and mind)heals
Cheers
Gabriele