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Joined: Feb 2006
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Daisy42 Offline OP
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A week ago tomorrow, my husband was diagnosed with oral cancer. He has a tumor on the base of his tongue. They did a biopsy and it was squamous cell. They did a CT scan Monday and a scope under anesthesia this evening.

This evening the doctor could have just as well stomped me in the stomach, than to drop all the bombs he did. The tumor on the base of his tongue is 5 cm. They say with its size and placement, they can't do surgery. He has some spreading, I think they said to the soft palate, but some of it is a blur. The doctor didn't have the report from the CT with him, but also stated it appeared it had spread to his lymph nodes. Okay, that was bad enough. Then he tells me they found a 1.7 cm nodule in his left lung, which they also believe may be cancer. They are setting up a PET scan asap, to see if it has spread elsewhere. He says, at this point they don't know if the nodule in his lung is related, but he said it doesn't look good, and if it is related to the oral cancer he says there is basically no reason to pursue any further treatment. He said if it isn't related to the oral cancer, but is an unrelated case of lung cancer, then they might be able to do something.

I've been reading on here for the last few days, and trying to educate myself as quickly as possible, but my brain just about shut down tonight. We already had an appointment set for tomorrow with a Radio Oncologist and another appointment Friday at the cancer clinic where they are supposed to have some sort of conference with several doctors and then meet with us.

If it has in fact spread to many other places in his body I know the outlook is not good. But, my fear is, he already has a difficult time swallowing or eating without pretty severe pain, but if it has spread and they can't do anything for him, then what is the answer - let this thing on his tongue base continue to grow until he can't swallow at all.

I'm sorry, I know I'm new here, and I know I've rambled on a bit, but frankly, I'm petrified, as I guess everyone else here has also been at some time or other. I appreciate his doctor being honest, but it appears he's telling us there is pretty much no hope. My husband is only 49 years old. He's already said he doesn't want to go through painful treatment if it will only prolong suffering.

Thanks for letting me vent here. I know I'm just another stranger, but I figured there was no one better to talk to than someone who has been there before.


CG to husband, dx 02/09/06 tumor base of tongue spread to lymph nodes. 35 combined xrt/imrt rad plus 3 rounds Cisplatin. Final tx 05/18/06. Parotidectomy & Sel Neck Dis 08/09/06. Lung cancer surgery 04/20/07. All currently in remission.
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Hello & welcome Daisy. I am truly sorry to hear of the bad news. Slow your mind a bit & breathe. Is your husband being seen at a comprehensive cancer center that has lots of experience with head & neck cancers? MD Anderson in Dallas or is it Houston comes to mind. If not, get to one quickly. Youv'e got a lot coming at you guys, hard & fast. Remain calm, but take action. Keep coming here & let us know whats going on. We are here for you just as many others have been here for us when we first came here. It sort of dawned on me a couple weeks ago or so that I am a 2 year survivor of stage IV advanced cancer. I had a 6cm tumor at base of tongue & it had spread to 3 lymph nodes in my neck. I am alive, strong & cancer free today as far as I know & give a lot of the credit to the comprehensive cancer center & the team approach to my treatment. We hit it as hard as we could with all the treatments available. Stay positive, get educated & don't ever give up! Erik


dx 2/11/04 scca bot T3 IU 2B MO poorly differentiated, margins ok, 3/16 modest, jaw split, over half of tongue removed, free flap from left forearm - finished chemo & rad treatment 5/20/04
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hello daisy, and welcome to the most informative site ever .everyone will be here for you as you trail the long hard road. remember
we have all been there try and take it as it comes remain strong for you hubbie .......prayers sent your way god bless ..maz

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goodmorning Daisy,
I know that things seem bleak but statisics mean nothing. all of us are unique, listen to Erik's advice, I have not been a survior all that long, in fact only about a month, but I had cancer of the right tonsil that had spread to a lymph node in my neck, I have completed radiation and chemo and had surgery, and I have already gotten a good pathology report. I know that it is hard to comprehend with your husband being so young, I am only 48 by the way, but you must remember that your husband cannot give up and must try all available treatments, remember this daisy, my ex wife who is a 16 year cancer survior was constatly telling me that today more people live from cancer today than die from it and there are more successful treatments today than yesterday, just don't let your husband quit, there is always hope and the power of positive thinking and attitude can work wonders, does that mean that you should be cavalier and not scared, no not at all, I was scared out of my wits and still am from time to time but keep everything in perspective and aggressivly start this fight against this dreaded disease.
always lenny

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Daisy,
I'm so very sorry to hear of your troubles. The advice you have gotten so far is right on. First priority is, get his pain under control! If he doesn't hurt so bad, he will have more energy and incentive to fight this battle. You will both need all the fight you can muster.
And right now, this minute, start getting him to eat as much as he can put away, build up his weight, give him vitamins, get a dietary consult, whatever it takes to put the pounds and muscle on.
Best wishes, and keep us informed! We are all pulling for you guys!

Andrea


SCC L lat tongue,Dx 9/15/05 T1N0MX L MND and L lateral hemiglossectomy 10/03/05. Recurrence 11/15/06 2nd surgery 12/04/06 hemiglossectomy 3rd surgery 01/15/07 tonsillectomy Radiation 01/25/07 to 03/08/07 3-D/CRT X 30
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Daisy,
I know everything is so very overwhelming right now. You have already received some good advice. The only thing I could possibly add is to seek a second opinion. The treatment for any head/neck cancer is a very difficult journey. Vent here any time. You are among friends and we are pulling for you both.

Carol


Carol R - caregiver to hubby Ken. Stage 4, SCC, BOT. 6/05 dx, 9/25/05 last tx, 5/06 stroke. Four years cancer free! Still taking things 1 day at a time.
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Daisy,
NO, NO NO on the vitamins while he has cancer. At least that is what I was told back in 1998. Check with your doctors first. I'd defintely go to MD Anderson if you can or at least get a second opinion from them. Since this is hitting you so hard, I'd take a third person, one who is not so emotionally involved, with you on the doctor visits to take notes or tape record the meetings. It is so hard to remember and digest everything that is said when it is unfamiliar and coming at you so quickly. Here's hoping for a clear Pet Scan.

Take care,
Eileen


----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
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Don't allow him to give in without a fight. Everthing you mentioned is treatable. Things may look bleak but remember the darkest hour is just before dawn.
God Bless
Darrell


Stage 3, T3,N1,M0,SCC, Base of Tongue. No Surgery, Radiationx39, Chemo, Taxol & Carboplatin Weekly 8 Treatments 2004. Age 60. Recurrence 2/06, SCC, Chest & Neck (Sub clavean), Remission 8/06. Recurrence SCC 12/10/06 Chest.
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Daisy42 Offline OP
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Thank you folks so much for your support. We just got home from the Radio Oncologist and I have to say he made us feel much better than the ENT did last night. The PET scan is scheduled for tomorrow morning. At first the other doctor couldn't get it done until next week, but the oncologist handled it and it will take place in the morning. We have a conference at the cancer center tomorrow at 4 where apparently several of the doctors from the center meet with us after the case has been presented and give us the options. The oncologist presented the basic three options to us today, and said after tomorrow they will know which road it appears we are headed down.

I think the ongologist at least got the idea out of my husband's head that this is all a dead end. I know from reading your many stories that all these roads though they may be very bumpy, aren't dead ends. The oncologist gave us a chance of hope, whereas the other doctor pretty much said if it had metasticized he might as well just give up.

Thank you for your prayers and strength. You don't know what a blessing it has been to have found this place. Yes I do fall apart sometimes at home when I'm by myself after he has gone to sleep, but, with the help you have provided here, I have so far been able to ask questions and maintain composure when it mattered most.

Thanks to you all.


CG to husband, dx 02/09/06 tumor base of tongue spread to lymph nodes. 35 combined xrt/imrt rad plus 3 rounds Cisplatin. Final tx 05/18/06. Parotidectomy & Sel Neck Dis 08/09/06. Lung cancer surgery 04/20/07. All currently in remission.
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In my humble opinion, someone needs to beat your first doctor upside his head with a big stick......then hug and thank your oncologist. How dare the first doctor say treatment isn't worth it?? How does he know the node in the chest is cancer?? Only a biopsy can show that. Stay away from this doctor is my first advice. Get to a CCC is my second. Listen to all the late stage survivors on here (myself included) is my third.
Take care,
Minnie


SCC Left Mandible. Jaw replaced with bone from leg. Neck disection, 37 radiation treatments. Recurrence 8-28-07, stage 2, tongue. One third of tongue removed 10-4-07. 5-23-08 chemo started for tumor behind swallowing passage, Our good friend and much loved OCF member Minnie has been lost to the disease (RIP 10-29-08). We will all miss her greatly.
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