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Joined: Jul 2011
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WarrenW Offline OP
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Hello all. My name is Warren, and as of today, I am a cancer patient frown I'm 35, don't smoke/use tobacco, and don't drink.

Last week, I had my right lingual tonsil removed due to a cyst that has been bothering me. I've actually been having on and off pain in that area for about 4-5 years. 2 months ago, I went into my ENT saying the discomfort was pretty persistent on almost all swallows, not just on/off. I was scoped, and they found a cyst. I was thrilled that they finally found the cause. They said that it didn't look cancerous, but as standard operating procedure, they performed a biopsy, and sent it off to the lab.

Today I went in for my followup, and he gave me the bad news. His initial diagnosis is that I have SCC, base of tongue, T1N0M0, stage 1. HPV test not back yet. How quickly life changes. Just a few hours ago, I had no idea what any of these terms meant. He's sent the paperwork off to 2 different oncologists. I'll schedule my first appointments with them after the long weekend.

I'm frightened after reading some stories, and so is my wife. We have a child that is just 8 weeks old. I found out about the cyst the same week that he was born. I'm happy to have found this forum though. I'm sure I'll be leaning on it for support.

Warren


Age 35
non-smoker, non-drinker
7/1/11 - Diagnosed with SCC @ BOT, stage 1, lingual tonsil & cyst removed
8/9/11 - Corrected diagnosis of MEC @ BOT
8/17/11 - TORS to remove lesion
9/2/11 - Bilateral neck dissection. All nodes clear! Done!
12/13/11 - PET/CT scan clear
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Welcome Warren, this a very caring and knowledgeable group that you can pass questions to, vent to when you feel like it, or gain inspiration from when you need it. There are many survivors and patients with very similar diagnosis to yours, and they will be a great resource for anticipating what is ahead on your path as you move from patent to survivor.

So, the next big step will be deciding who your treatment team will be, and what those treatments will be. Others here will guide you through building your signature block, but you have already stated that this is a very early find, which is great thing for you. I assume that determination of the N0M0 part of your staging was determined from a scan which showed that your cervical nodes in your neck were clear and there is nothing else going on in your body. Locally confined disease is much easier to deal with.

As to the HPV status of things, while it will not at this time change your treatments, it will likely be HPV16 positive, as you have the classic presentation for it. The good news is that HPV status give you a distinct survival advantage over non HPV oral cancers. VA has some great comprehensive cancer centers with super national reputations, and that is also in your favor.

Please take a moment and go to the main OCF website and to the staging page, so that you understand it well. Also remember that we have all kinds of patients here, and no two are exactly alike in how they respond to treatments, or how they emotionally deal with things. While some very dire things are discussed on the boards I caution you not to read others situations into your own. You are a unique biological entity.

Knowledge is power, and chance favors the prepared mind. Start reading on the OCF main site so you can make good informed decisions, supported by information from those here that have actually walked the path before you. No one gets through this alone, and in addition to your team in VA, and your family, not too far into the future you will begin to feel that this is your cyber family and part of your team as well.

Let's hope your journey is quickly made, with the fewest number of complications, and you have a rapid return to a normal healthy life.



Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
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Welcome to OCF, Warren! I am so sorry you have gotten this unexpected news that you are now a cancer patient. You are very lucky that it has been caught in the early stages. Its easier to treat.

Finding the correct treatment facility is a very important decision. Here is a list of cancer centers. A cancer center will have a whole treatment team working together on your case. They will also see more cases similar to yours.

Cancer can be like a thief, it can steal your time away from what you love the most. Try your best not to worry, it wont change the outcome. I know its not an easy task but try your best to enjoy your holiday weekend with your family. Congrats on your son!

http://www.oralcancerfoundation.org/resources/cancer_centers.htm


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
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Hey there welcome try not to worry too much - youll get your questions answered hopefully when you see the dr. Until then enjoy your time with your baby and wife. It's. Long haul but you can ge brought it. Take care!


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
Joined: Jan 2011
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Hi Warren,

As a caregiver I have found the Oral Cancer Foundation Forum to be a godsend and a great source of comfort. Please let your wife know that she also has a place to turn when she has questions or needs the support of a compassionate shoulder or ear.

Unless a person's life has already been touched by oral cancer, it is nearly impossible for him or her to understand what an oral cancer patient or caregiver is experiencing. When I discovered that no one else could understand what my husband and I were going through, it was frustrating and lonely. But, people on the OCF Forum understood exactly what we were going through. It made all the difference in the world for me to be able to talk with people who knew the challenges and generously offered advice, support, and friendship. The Oral Cancer Foundation truly is a family.

Please take comfort in knowing you have found a valuable resource and haven to help you and your wife navigate from diagnosis to treatment to recovery. And, the OCF will continue to be a source of information and support as you live your life as an oral cancer survivor and your wife as a co-survivor.

You, your wife, and your baby are in my thoughts and prayers.

Sandy


Ex-spouse MISDIAGNOSED with SCC-HN IVa 12/10. Tonsils out 1/11. 4 teeth out 2/11. TX Erbitux x2, IMRT x2 2/11. 2nd opinion-benign BCC-NOT CANCER 3/11. TX stopped 3/11. New doctors 4/11. ENT agrees with 2nd opinion 5/11. ENT scoped him-all clear 7/11. Ordered MRI anyway. MRI 8/22/11 Result-all clear.
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klo Offline
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Hi Warren

You have a massive advantage in your age. Unlike us "old farts", your ability to bounce back is just so much better. That is not to say that your journey won't be a difficult one but with support and knowledge, you can do this. Hopefully in a few months time, you will wonder what all the fuss was about.

Fear of the unknown was the thing that scared Alex and I the most, and once we got going with treatment, the fear became manageable. Now the fear is around it coming back and we are coming to terms with this being a background stressor for the rest of our lives. We are assured by others before us, that this too will lessen with time.

There are people who get through treatment and get on with their lives and unfortunately, they are the ones who post here whilst they are in treatment and then disappear from the boards to live their lives. Of course, I am thrilled for them but I say "unfortunately", because it does tend to skew the posts here towards the fears and difficulties of treatment. Amongst the fear and doom, there are some truly inspirational people who open their hearts, refuse to lie down and who dedicate their time to helping others. Even the "newbies" are extraordinary in their outlook. Find them (or wait for them to find you) and listen to them.

The information you get here will help you to understand your options SHOULD it happen rather than WHEN is happens and you should be reassured that your young age, early diagnosis and support system are all in your favour.

Keep us posted with your progress


Karen
Love of Life to Alex T4N2M0 SCC Tonsil, BOT, R lymph nodes
Dx March 2010 51yrs. Unresectable. HPV+ve
Tx Chemo x 3+1 cycles(cisplatin,docetaxel,5FU)- complete May 31
Chemoradiation (IMRTx35 + weekly cisplatin)
Finish Aug 27
Return to work 2 years on
3 years out Aug 27 2013 NED smile
Still underweight
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Warren - I'm so glad you found this site. It's the best place to be for the very latest information and support from those who have been where you are. My son was close to the same age as you when he was diagnosed with SCC. And now, almost five years later, he is doing just great! As mentioned above, you have the advantage of being diagnosed at a very early stage, your youth, and the support of your wife and of course one of the biggest reasons to take on this challenge to survival: your brand new wonderful son!! My son's daughter was 5 years old at the time his SCC was discovered and I found it amazing the effect that she had on his successful recovery. She kept him focused on the good things in life and all the simple joys a child can bring to a parent. You can do this! Just search this site for all the information you need and write down all the questions you have for the doctor and/or for us here. It does help to have others go with you to appointments, not only for support but for help in remembering what was said so that you can check with each other later. If you want to provide a signature line (see mine below), it helps others to know your background so they can more easily relate to your situation and answer your questions. So whenever you have time, just go to the top of this page where it says "My Stuff", click on "profile" and scroll all the way down to the bottom where you will see a signature box and fill in whatever you like. Stay with us, Warren, and you and your wife enjoy each minute with that wonderful new little angel in your lives!

Last edited by Anne-Marie; 07-02-2011 03:11 AM. Reason: typo

Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)



Joined: Jul 2011
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WarrenW Offline OP
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Thank you everyone for your support! Last night was a long night. There is a lot whirling around in our minds. I've directed my wife to this thread as well.

After reading more, I'm starting to think the diagnosis of T1N0M0 might be premature, since I haven't had any sort of scan yet. That was based upon the ENT's observations of the cyst, and I guess feel of surrounding lymph nodes. My PCP also did a pre-op physical and did not discover any abnormal lymph nodes by hand. My ENT did also discuss with me the fact that there are some studies about TORS, to remove more of the tongue by laser, but they are still early. At the time, I told him I wanted to go the route that has the most proven success, so he directed me to 2 particular oncologists at the Cancer Center of Lake Manassas (in Virginia).

I was in shock as he was telling me. I think the shock is over, and the reality has set in on us. The first clue I had was that when he was telling me about the removal of the cyst, he said it was breaking apart funny instead of sort of vaporizing as a coblation would normally accomplish. He already had suspicions as he was removing the cyst.

Looks like I won't have an accurate diagnosis until after seeing an oncologist. I'm eager to take the first few steps to get a more accurate diagnosis. I may want to go to a larger cancer center for a second opinion. Sounds like we only get 1 shot at this if we go radiation route, so I want to make sure it counts.

Here I was just a few days ago saying that I was undergoing the most pain I had ever felt. I guess I'm in for another challenge. Bring it on.

edit: I will likely create a new thread in the appropriate forum after I get the first scan.

Last edited by WarrenW; 07-02-2011 07:39 AM.

Age 35
non-smoker, non-drinker
7/1/11 - Diagnosed with SCC @ BOT, stage 1, lingual tonsil & cyst removed
8/9/11 - Corrected diagnosis of MEC @ BOT
8/17/11 - TORS to remove lesion
9/2/11 - Bilateral neck dissection. All nodes clear! Done!
12/13/11 - PET/CT scan clear
Joined: Dec 2010
Posts: 5,260
Likes: 3
"OCF Canuck"
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"OCF Canuck"
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Joined: Dec 2010
Posts: 5,260
Likes: 3
Great attitude! You can get through this.


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
Joined: Oct 2008
Posts: 251
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Posts: 251
Hi Warren,

You are in the right place for help and support.

You will probably want to go for a second opinion; it really helps your peace of mind in that you made the best decision regarding treatment.

I am in VA also and got a second opinion from an ENT at Johns Hopkins. He is exceptional and very knowledgeable.

We don't post identifying information about doctors, but if you want me to send you more information, send me a PM.

My Best to You!


Catherine

2mm tumor excised 09/23/2008 (floor of mouth)
SCC (superficially invasive, well-differentiated)
Stage 1, T1N0M0
01/2009 and 01/2010 - PET/CT clear
Four and 1/2 years - NED!
"Detection can be easy, treatment is not!"
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