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#20265 04-21-2006 09:16 PM
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dsymae Offline OP
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I am new here and my family and I are reeling from the news that our 18 year old son has a squamos cell carcinoma of the cheek. He had a cyst that was removed last with no clear margins that, according to size, indicates a Stage II cancer. He had a cat scan and blood work today and results will be in next Wednesday, with his first radiation appt. on Thursday. The doctor has indicated that radiation and chemo may both be necessary. That is all we know at this point. Any information would be much appreciated from survivors and those who have experienced this type of situation. Thank you.

#20266 04-22-2006 02:35 AM
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dsymae,

I'm sorry you have to go through this, especially with someone as young as your son. If he's a Stage II without clean margins, it doesn't surprise me that his doctors are recommending both radiation and chemo to follow the surgery. Unfortunately, this disease can be fairly aggressive, and often needs to be treated aggressively as soon as possible to try to minimize the likelihood of recurrence.

I don't know if you have had a chance to look around this website to any extent -- if you haven't, please go to the homepage and check out the contents. There is an enormous amount of helpful information here that can help get you up to speed on some of the things you will want to ask his doctors. You didn't mention whether he is being treated at a comprehensive cancer center (there is a list of them under "Other Resources" on this site). If he is not, I would urge him to at least get an opinion from one about the scope of his treatment plan. With this type of illness, it can be very important to be under the care of a team that has extensive, day-to-day experience with oral cancer.

Feel free to post your questions here as you go along. There are plenty of people on this site regularly who can relate to what you're going through and will try to help.

Cathy


Tongue SCC (T2M0N0), poorly differentiated, diagnosed 3/89, partial glossectomy and neck dissection 4/89, radiation from early June to late August 1989
#20267 04-22-2006 03:56 AM
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Dysmae, Sorry to have you among us. You must be feeling overwhelmed. Somehow a cancer diagnosis tends to stun people first and foremost. That will pass. You must educate yourselves - the more you know, the better the chances your son will beat this and live to be an old man.

Cathy mentioned that oral cancers are often aggressive. This is true. There are so many complicated structures in and around the mouth, that cancer has way too many places to hide. And I agree that it is REALLY important to talk to docs who treat this particiular type of cancer regularly - its a bit different.

The best docs are really aggressive with treatment - they "pull out all the stops" when prescribing for head/neck cancers. Hit it early, and hit it as hard as possible. Those of us who have had aggressive treatment are still here to tell the tale.

The treatment can be very tough, though we each experience it differently. Chemo and radiation are scary, but very manageable. Most of the 'scary' for me was helped with knowledge - the better informed you are, the fewer surprises you get. Most of us are quite a bit older than your son, so if we can do it, I'll hunch your son can too.

Get more than one opinion. Always. Read about oral cancers here on this site. Ask lots of questions when with the docs. Don't let them minimize your questions or concerns - make them defend the decisions they are making - why this treatment? why this drug? etc. Always ask to be told about all other options. Be a smart consumer and be tough to pursuade about everything. It keeps them on their toes, and it gets you better informed - both are critical.

Don't listen to the "odds". Ever. Make your own odds. Let the scared wash over you, then get mad, get informed and get aggressive. Don't let the beast win. This disease can be beaten. We have done it and we are many. Come to this forum often with questions and worries. Get your son on here too. Let us help. Be strong. Tom


SCC BOT, mets to neck, T4.
From 3/03: 10wks daily multi-drug chemo,
Then daily chemo with twice daily IMRT for 12 weeks - week on, week off. No surgery. New lung primary 12/07. Searching out tx options.
#20268 04-23-2006 03:15 PM
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Welcome to the Oral Cancer Foundation Dysmae. Sorry you had to find us but glad you did.

Is your son being treated at a Major Cancer Center? You want someone who sees alot of this type of cancer. It is a very unforgiving diaease. A team of experts that determine his best course of treatment. We are all different and react differentely to similier treatment.

Was or is your son a chewer? So unusually to see this cancer in someone so young.
Please continue to post his progress and I hope you all the best as you start a frightful journey. Many of us have traveled the road ahead of him and survived, He can to!!!

All my best, Danny Boy

Did you get a second opinion from anyone else? It's a good idea if you haven't. Starting radiation so soon makes me wonder.


Daniel Bogan DX 7/16/03 Right tonsil,SCC T4NOMO. right side neck disection, IMRT Radiation x 33.

Recurrance in June 05 in right tonsil area. Now receiving palliative chemo (Erbitux) starting 3/9/06

Our good friend and loved member of the forum has passed away RIP Dannyboy 7-16-2006
#20269 04-24-2006 04:44 AM
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dsymae Offline OP
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I want to thank the three people who posted such helpful responses to me here. I appreciate the information and encouragement. Right now, the hardest part is waiting for the results of the CAT scan and bloodwork, and not knowing how bad it is yet. In answer to my son's tobacco history, he has chewed on occasion, but not regularly at all. He has also smoked on occasion, but again, not regularly. He is a chronic asthmatic, so we have always been completely against any tobacco use for him (neither of us are smokers or chewers). He picked up on his older brother's smoking habit back in middle school, sadly. This surgeon who removed the cancer in his cheek told my son that it was not tobacco related, although I'm not sure how you really know that.
There is so much to think about right now and so much fear of the uknown. We are focusing on the hope and faith of his full recovery because we believe that faith and fear cannot live in the same place. I have to say, though, that I can do nothing but cry this morning. We have two younger children, ages 11 and 13, who still live at home with us. Once I got them off to school today, I started in on the despondent crap and am trying to buck up here.
Again, I appreciate all the input and look forward to continuing updates and corresponding. I am thrilled that you are such strong survivors!

#20270 04-24-2006 03:06 PM
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Dsymae, With the assumption that you will be your son's primary caregiver, I urge you to read all of the "posts on getting through it" on this site. There are lots of good suggestions to help you and your family get organized for this road ahead, and I promise you that being organized is going to help you alot. You will be hearing lots of medical stuff that is unfamiliar, meeting several Docs, dealing with Ins. issues[Does he have Ins.?] Get a big 3 ring binder and start filling it. Everytime you see something on this site that pertains to his treatment, print it and put it in your notebook. Have a section for each Doc he sees so that you can write down questions and their answers. Please keep us posted on what is happening so we can support your family. Amy


CGtoJohn:SCC Flr of Mouth.Dx 3\05. Surg.4\05.T3NOMO.IMRTx30. Recur Dx 1\06.Surg 2\06. Chemo: 4 Cycles of Carbo\Taxol:on Erbitux for 7 mo. Lost our battle 2-23-07- But not the will to fight this disease

:
#20271 04-24-2006 07:28 PM
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Dsymae,

You have found the very best place you could possibly be. When the doc called to tell us about my husband I had never heard of SCC and had no idea what it meant but I found this place and I was able to make the treatments better for Harry because of the advice I gained being here.

Rule #1 - This can be beaten. The receptionist at the radiation facility that my husband went to was proof. She was diagnosed at 19 with tonsil SCC. She is now 64 and retired last year. She had far less technology and understanding about this disease than we do now and she has made it more than a lifetime!!

I share this with you because you need to know that the road has been traveled and your son has lots of hope. So should you!!

Take Danny's advice and make damned sure that you are treated at a major cancer center. This disease affords few second chances so fight it with every advantage you have. Even if you have to leave the state it is worth every mile I assure you!

When you have questions, drop in. Need to vent, drop in. Want a laugh because the day has really sucked..... drop in.

Put this place in your favorites and make it a home away from home. You are among friends here and we were all where you are now at some point.

Tell your son that if he needs to talk he should logon! We will answer whatever questions he has... at least as much as we can. Most important make sure he knows that he is not alone!

And neither are you. Make sure that you are his greatest advocate. I know that sounds difficult but you can do it. You took the first step coming here and it will only get better from there.

Now.... get a notebook. Go to every appointment with him no matter what and write down everything the docs tell you. Use the notebook to also write down questions you have. Keep that notebook close as it will be your best friend. When we are dealing with such stresses it is impossible to remember everything so make that notebook your friend. It will remind you of appointments, what the docs tell you and what questions to ask at the next appointment!

You are already ahead of the game because your son is at an age where he is strong and fighting! Make sure he uses that to his advantage. Then you feed on his strength and he will feed on yours.

Yes there will be times when you will wonder how much further you can go but if you look up any one of us and read our past posts you will see that we have struggled and triumphed! You will do the same. What is most important is that you are never shy about asking any questions and you seek us out when you need us.

Many of us have experienced what you are going to go through and others have not but the beaty of this forum is that someone is bound to have experienced something similar and we are all willing to share when we think it will help.

Find your armor... it is there somewhere and then use us to make it even stronger.

So long as you are here you and your son are never alone.

Be careful because around here we make friends for life! hehe

Let us know how things are going and don't ever hesitate to say what is on your mind.

You are now part of a whole that is so great you will never be alone. Use us! We are here for that very reason.

Keep us updated and let us know how things are going.

By the way, what is your son's name?

With Love Always,
Cindy


Caregiver to ex-husband Harry. Dx 12/10/04 SCC stg 3, BOT with 2 nodes left side. No surg/chemo x4 /rad.x37(rad comp. 03/29/05)Cisplatin/5FU(comp. 05/07/05)-T1N2M0-(cancer free 06/14/05)-(12/10/06) 2 yr. Survivor!!!
#20272 04-25-2006 02:48 AM
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Hello Dsymae, Wow! I have children about the same ages as yours and I can imagine what you are going through from both perspectives. This time you are going through is perhaps the toughest. Once a plan is developed by the doctors, things change from fear of the unknown to getting on with the fight. Please take my advice and do not go looking for statistics on the web. Statistics will not help you. Each person is unique in how they respond and hope is of great benefit. Sure the negetive thoughts will creep in from time to time just don't let them consume you. It is possible to train your mind to deal with the stress in more productive ways than fear. My heart goes out to you and your son. The road ahead may not be easy but it is a battle that can be won.

I would be interested in hearing what the doctors suggest is the cause.


Mark, 21 Year survivor, SCC right tonsil, 3 nodes positive, one with extra-capsular spread. I never asked what stage (would have scared me anyway) Right side tonsillectomy, radical neck dissection right side, maximum radiation to both sides, no chemo, no PEG, age 40 when diagnosed.
#20273 04-25-2006 05:53 AM
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dsymae Offline OP
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I am simply overwhelmed with the support and encouragement of these replies. My son's name is Micah, and I am Cindee. I have gained much knowledge already from this site, as well as the emotional support you offer.
As for insurance, Micah does have it. He is currently covered under medicaid in the state of Nevada due to some circumstances that I really don't care to go into here. Those circumstances involve the fact that we are working on getting him home and out of the place he is currently residing. I believe that if indeed he needs both chemo and radiation, he will be unable to work. He is currently a welder and has been working for a wonderful small business owner in Reno, Nevada since December. Once he is home, his medicaid coverage will cease to exist but we have Blue Shield coverage through my husband's employer. It is a large $5,000 annual deductible, but I know that will be used up in short order when we are looking at treatment and surgery costs, etc. The nearest cancer center that is recommended through this site for this particular type of cancer is in Sacramento, CA, at UC Davis. We live in Carson City, which is roughly 3 1/2 hours driving distance from our home. We do have a cancer center in Carson City, as well as one in Reno, where he is will be starting radiation on Thursday. It is all happening so fast, as we don't even have the CT scan and blood work results for him until tomorrow afternoon.
It is emotionally difficult because our situation is unique in Micah not being at our home, and we hate being apart for any length of time right now. Once the test results are in and we have a better idea of exactly what we are dealing with, I am praying that we can get him home ASAP. He is all I can think about every waking moment of the day. I keep trying to shake this despondency, and I am educating myself through it, but my husband and I are both just devastated.
I was diagnosed with breast cancer 3 weeks ago and have clear margins and a good prognosis after surgery. It was the very next week, after being overjoyed about my good biopsy result news, that we received this news about Micah. It's alot to handle. I have an oncologist appt on Monday a.m., and will more than likely have to undergo radiation follow-up myself. For me, it is irrelevant compared to my son's situation. Yes, I have a notebook already and have questions for the doctor we are seeing tomorrow. I agree with statistics and not paying any attention to them. We will beat this thing. I just want you to know how, despite the fact that I really don't even know you, you are such a comfort and encouragement to me. It helps me to be strong for my son and the rest of my family. God has brought me to this site, and I am thankful.
Love, Cindee

#20274 04-25-2006 06:38 AM
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Hang in there Cindee. I had breast cancer and oral cancer at the same time (like you I had a very good prognosis for the breast cancer). This has to be very hard having a child that's so young go through this but there is lots of hope that ebcause he's so young he'll pull through just fine. feel free to come here whenever you get overwhelmed (by the way, on a glass-half-full note, you will probably really feel like radiation for breast cancer is a piece of cake after seeing your son through radiation and chemo for his oral cancer)

Nelie


SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
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