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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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Daisy, just one more stage IV with mets to nodes person checking in here. That was four years ago and I am just finished with a head to toe check and there is nothing at all wrong with me. Many, many people go through the rigors of treatment and return to a happy life. More than you will hear from on this forum by a large factor. Always keep that in mind. You and your husband, too, can join that group. There will always be someone here to answer your questions, or just encourage you when you need it. In other words, we've got your back!

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I agree with Minnie. This guy needs to rethink his approach to patients, and more so the successes that we are seeing in the field these days. You have not posted back as to where you are being treated and what kind of institution it is.... but MDACC is one of the best in the world, and has resources that are not available in may other places. Time is of the essence, so you have to PUSH for things to get started as soon as possible. Don't accept delays while this cancer is growing. Doctor's schedules should not be a determining factor to you. Get another doctor or another facility if you run into scheduling problems with someone.


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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Daisy,we just got home today from John's 2nd surgery and our ongoing battle against this damnable disease. Remember, "it aint over till it's over" Being the caregiver and a wife gives you the right to panic attacks, anxiety attacks, fits of depression-whatever. Being a wife and caregiver also DEMANDS that you will be one tough cookie from now on and fight like hell for your hubby. There are alot of people here who will prop you up, teach you things you need to know and just "be here" for you. Read the advice above again- it's good. Stay with us and let us help. 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

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Daisy,

I know things are coming fast and I am sorry for your news and the shock of it all. I am interested, too, in where you are in Texas. Even in Dallas, there is a good comprehensive cancer center, probably the next National Comprehensive Cancer Network member. MD Anderson in Houston will also do a teleconference with other doctors for an expedited second opinion.

Eileen's advice to take someone along on appointments is great advice. Your first doctor may have painted a bleak picture by a handful of words and it only makes it more difficult to think through and process all the doctors are saying when you are feeling like you were just kicked in the gut, as you describe it.

Arm yourself with all the information you can to help make the best decision possible. Find the team that you have the most confidence in and keep moving forward.

Best wishes,

Ed


SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
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Daisy42 Offline OP
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Thank you for all the wonderful advice. I was concerned about the scheduling issue until we went to the oncologist's office this afternoon. He's the one who stepped in and got it scheduled for tomorrow morning. Apparently there was an issue with the insurance company and he knew how to make it happen. He made it clear that he wants to move asap, and also that he understands that telling somebody they get to wait another week to find out the answers we needed yesterday, just won't do. The fact that he seems to care about our plight made me feel better.

In answer to the question regarding the facility, it is the UT Southwestern Moncrief Cancer Center. They are involved with clinical trials and research, and their facility seems to include the major treatment avenues I have seen discussed here, IMRT, TomoTherapy and PET/CT Imaging. The oncologist, and I won't mention names as I understand that is a no-no, completed with a fellowship in Radiation Oncology at the University of Texas M.D. Anderson Cancer Center. They seem to staff a large number of cancer specialists from various fields, and from what I understand the conference where our case will be presented tomorrow afternoon will include a number of these specialists who aren't even our doctors yet.

If anyone has any comments about this facility I certainly welcome any input.

I'm sorry to go on so long, but we did go through a pretty big ordeal tonight. He suddenly decided for a while this evening, that he didn't want to go through any more. I know that may not make sense to most people, but, he has always been a man who has had an intense fear of needles and frankly hates doctors. I know, nobody really likes them, but he has a true aversion. It took a lot of what he called me really being an ugly word, to get him to commit to going through with the next few steps. He asks why should he go through this when he believes in the long run it will get him anyway. I tried to explain to him what I have seen here, that there are many people who have faced what he is facing and have come out the other side, looking forward to 5, 10 or more years of wonderful life. I threw every punch I knew tonight, but for a while I was afraid he wasn't going to budge. I even approached the subject that he might consider speaking to the counselor at the center and that was met with a very strong NO and that I was never to mention that again. I know based on some of things I've read here, that other caregivers have faced this type of response. But it is hard to fight his logic - it's his life and if he doesn't want to go through the pain - who is to tell him any different. I told him I was - and maybe it seems selfish, but I told him I thought he owed it to us, to me, to at least try - he knows he's not just my husband - but my best friend. I turned it around on him and said if it was me what would you do - of course, he says that's different. If he gives up, he dies, but if he gives up - I don't die - I have to live with it and I am not willing to do that.

Perhaps if some of you from the other side, could give your insight into what helped you decide to fight, decide to endure the pain and go on, it will help me know what to do or say to help him. He's only just begun, and based on the big picture, I know he hasn't been through a miniscule piece of the entire picture, so I know that tonight won't be the last of these battles. I found myself angry with him tonight, mad that he would even consider not fighting. Don't get me wrong, if the worst case scenario should come to be, I do understand his wishes to not pursue avenues that would only make the time he has left miserable. But I'm not willing to go there yet - until they can all tell me it's over - I refuse to give up - I just have to find a way to get him to refuse to give up.

Again, thanks for letting me bend your ear. Hopefully as time goes on, these epistles won't be so long. There just seems to be so much, so fast.


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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Daisy,
Believe me - I feel your fear. I had a very abrupt ENT actually get mad at me for not coming in sooner and that I should get my affairs in order because I had a highly advanced cancer and probably wouldn't survive 6 months. I then commenced to pass out in his liitle throne ENT chair. It was quite a scene - my wife was with me - the whole office stopped while they went running around looking for ammonia capsules. It was quite a shock initially, but then the survival mode kicked in, I joined OCF and lived on the internet for weeks gathering as much information as I could.

I send him a Christmas card every year just to remind him that he isn't always right.

To address your last paragraph; first, there is not enough diagnostic information yet to throw in the towel. The lung node could be scar tissue from a previous pnuemonia.

Pain can be managed and is a basic patient right. Since you are at a cancer center they will take care of that.

Not that any of this is a picnic but from my own experience I have had three years of life that I wouldn't have had otherwise and I look forward to many more.

I hated doctors, needles and all that stuff (I still do in fact)- I refused a PEG, getting my teeth pulled and I still survived - he just needs to get over the shock. From Hollywood and and various other sources it is all too easy to assume that cancer is an automatic death sentence but it is not and there are many, many survivors in the US today. My quality of life now is richer and better than it ever was before the cancer adventure.


Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
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Daisy,

I believe everyone has a right to chose their own course of action when they're facing cancer, even if it's not what I would do. That said, it makes me crazy to hear stories of people giving up before they even know enough about what the fight would be like. So I can just imagine what you must be feeling right now.

Lots of people have a very negative image of radiation and chemo. I know I did. Even though it was a grueling treatment for me, it was not anywhere near as bad as my worst fears about it made it out to be. And it was really from coming here that I realized that was probably true. I was an earlier stage and didn't have anyone give me such a grim prognosis as the first doctor you went to (and I agree with everyone else here that he was way out of line in how he presented things), I had the opposite problem which was I at first didn't see why I should go through such a grueling treatment when I ahd a decent prognosis anyway. It was really putting the treatment in perspective--yes, it was nasty but overall it was do-able and I had a lot of support--that gave me the courage to fight as hard as possible. As well as realizing that I would be at more peace afterwards knowing I'd done everything I could (which you might want to ask your husband about as he is weighing all this--how peaceful will he *really* feel if this disease does take his life if he didn't even TRY?).

I hope this helps and that maybe some of the other caregivers who post regularly here can come along soon and give you some support too.

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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Daisy, dear, guess what I found out? There's not a word or length limit on this forum! I'll repeat to you what a compassionate poster said to me--don't worry about thinking you're writing too much. That's what this forum is for! This is the safest place I know (besides prayer!) to say what you need to say and ask for help...or not. Venting is necessary to relieve the stress of this unthinkable situation, so go ahead, honey, and make no apologies!

Meanwhile, your attitude is great! I think what you told your husband is exactly what you needed to say. You have a balanced perspective on the end-of-life issues but it's too early in the process for him not to know he's not fighting it alone. If he were in his eighties or nineties with already compromised health, then he might be allowed to not consider pursuing the treatment measures, but only after he found out the extent of the disease and treatment options. As it is, you're right to let him know his life is worth fighting for. You're shaping up to be each other's heroes in this whether you asked to be or not. The selfishness would come if you weren't honest with him about how important he is to you.

This is my third trip. It's not squamous cell so it's behaved very differently. But I can remember thinking during the recovery of my first surgery almost seven years ago (when my boys were 2 and 3 and I was 32) that I wished I were dead instead of going through this. Eventually I was treated for chronic depression. I also remember hearing about someone whose surgery was to be "worse" than my first one and I thought to myself "I wouldn't want to live through that." Well this latest surgery in November was far more extensive than that one and here I am.

You asked what made those of us on the other side want to fight. Well, I'm not on the other side quite yet. I finished my fourth of thirty-three radiation treatments today. I will possibly never regain the ability to eat. I used to be a public speaker and singer, and unless by some miracle they can close my palate, and do some other anatomy alterations I won't sing again. But I've already had three speaking engagements and people just have to listen more carefully. I have alot of fight in me (which is another way of saying I've always been a stubborn, mule-headed little gem) and I'm at peace with where I am in this process. I have much to be thankful for. Why? Among other reasons, I have an incredible support system in my family and church. They did what you're doing. They loved me and wouldn't think of letting me quit. They stayed with me and took care of me and told me all the time what a good job I was doing of getting well. They allowed me to have bad days and reassured and encouraged me constantly. Love heals. And the more of it, the better. Isolation can be dangerous. But I knew every minute that I had too much to live for not to fight to stay alive. You're right that it won't be the last time you have this battle so gear yourself up for respectful, compassionate repetition.

And know you can count on us to be a help and a sounding board for you any time.

Ruth


Ruth E. Moran
dx minor salivary gland adenocarcinoma 4/99, resection 5/99;
rec 1 lymph 2 cm 7/03, mod. rad. neck resec. 7/03;
rec primary 10/05, resec, pec flap, PEG tube, IMRT 2&3/06, Osteonecrosis right mandible removed
1/08 metastatic lung cancer, 3/08 clinical trial MD Anderson
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Daisy - Your husband's comments about giving up make great sense to me. I was given a similarly bleak picture when diagnosed three years ago. There was no point in putting me or my family through a grueling treatment. Its expensive, it can be painful, and its frightening. Why not just hold my head up high, and stride bravely into the sunset. My time has come. Its noble. Its a quick solution. It made sense to me. I even considered driving my car into a bridge abutment. Nothing anyone said to me changed my view.

Then, I realized it was fear. The fact that I had the BIG C was overwhelming. I had watched my dad die slowly and painfully of cancer - rotting away by inches for months. Horrifying. Everyone who gets cancer dies. Right? That was my belief.

My oncologist listened to my very rational argument about NOT having treatment and just dying with my dignity intact - head held high. Then he proceeded to tell me what dying of this type of cancer would be like - nothing quick or noble about it. He suggested I would spend months on massive amounts of narcotics to ease the constant pain, too weak to take my own life, but aware enough to suffer. The man had my attention. Then he told me about treatment.

There wouldn't be any guarantees. Its not easy, but very manageable, and the "possibility" of a good outcome. The "take my cancer and die" choice had only ONE outcome possible. This treatment he described had TWO. I like options. The idea of "beating" the treatment and winning the war was a challenge. I like challenges. Might win, might lose - but it would be a glorious battle.

Your husband is a warrior. A brave and practical man. His fears and concerns are deserved. What he lacks is options. Put him in front of more competent docs. Get him to listen to them. He will come around and fight. There is nothing so satisfying as thumbing your nose at those doom and gloom docs. Get him in front of docs who really know this disease.

Get him in here with us. Have him email me. I'll talk to him. He is afraid and he should be. As that lifts a little, he will come back out and fight. We all did, and we are many. I'll send you a phone number where he can call me if you want. Email me. Don't worry about your warrior not fighting. He will. He can do this. You can do this. 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.
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Well, we got the news this afternoon. The nodule in his left lung is in fact cancer. The good news is that the PET scan did not find cancer in any new places we didn't know about. Now its down to finding out if the lung cancer is a metastasis from the tongue/lymph nodes or an unrelated cancer. The only problem is they said if the lung is also squamous cell, they probably won't be able to tell if that came from the tongue or is an unfortunate separate case of cancer. I don't know if that really makes any difference on treatment, other than if it is some type other than squamous in his lung it might be easier to treat.

We had some really good conversations this evening though and I feel a little bit more hope in regards to his will to fight. Maybe it will take a little background to help explain, but as I've said before, he has a true aversion to needles/hospitals. Show him a needle and it doesn't take much for him to pass out. He had a bad experience when they did the biopsy which was confirmed by his ENT this evening. Apparently when they pulled the tube and woke him up, something locked up and he couldn't breathe. He woke up with people screaming at him to breathe but he couldn't. Needless to say, they managed to get him breathing again but it really scared him. The other bad thing that happened was his doctor got tied up on an emergency case, so the wait for everything to start was much longer than it was supposed to be, so his anxiety really heightened.

Anyway, back to our breakthrough tonight. I found out that he's not really afraid so much of the side effects of the treatment. He's afraid of the things leading up to the treatment. They are going to have to do a needle biopsy of that nodule in his lung, he has to have his teeth pulled by the oral surgeon (they are really bad and it was something that he had been putting off before this happened.) In the conference today they mentioned the PEG tube and a port for the chemo. We've talked about the severe side effects from radiation and chemo - that's not his problem. It's the steps to get him there. I know that the needle biopsy is not done under general anesthesia, but it's going to take something stronger than the Valium they gave to him before the PET scan.

Frankly, he has told me - if he is going to go through with this, then they are going to have to give me something he can take before we leave home. I know patients have rights about pain control - but - is there something they can give him, or can I be insistent that they give him something for his anxiety? It's kind of ironic - he's been a peace officer for many years - shoot at him with a gun, do any number of things and he's not bothered - but mention the needle biopsy of his lung and he'll turn ten shades of green in nothing flat. I know that you folks know by experience, that these things he's worried about are not the biggies - but that's where he is right now and if I'm going to help him get through this, then I have to be able to assure him that we can insist that he be severely sedated for lack of a better word.

I am going to speak with the doctor about this on Monday, but if any of you have any experience/suggestions on what I should request, I'd appreciate your input.

Thanks again for your responses. They have been very helpful to me and to him. He hasn't been able to come here himself, but, he has been appreciative that I can answer some of his questions based on the words of those have been in his shoes.


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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Daisy, I just about changed my name and left town rather than have a PEG installed, but it turned out that an IV was inserted and I remembered nothing of the procedure. Just a couple of weeks ago I had a combination colonoscopy (about which I felt the same as with the PEG) and upper endoscopy, and was given an IV and woke up and it was done. In both cases, I woke up easily and clear headed. Surely the same can be done for your husband. I do not know the name of the short-lasting anesthetic used, but it must be very common. If you describe the effects I just mentioned, I am sure the doctor will know what you want. Tell your husband that I understand!

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Daisy,
I can relate to your husbands fears about needles. I did discover that most of the fear was mental after going through chemo, lots of bloodtests, etc. That didn't stop me from getting a presciption for Zanax for anxiety however. I took them all through treatment. There is also no reason why they can't give him something to take for pain before he leaves the house. Before I would leave the house for bloodwork I would pop a Vicodin (at least in the beginning) I soon found that I didn't really need them. You can also ask for a pediatric needle which you can barely feel. Some persons who draw blood are much better than others and I have had many blood tests that I barely felt. I put off going to the ENT for months because I was afraid of a needle procedure to drain (what I thought) was a peritonsillar abcess. Then I'm told it's cancer. The delay probably cost me a stage or two.

The port is probably a good idea. It will make it far more comfortable to get the chemo and with the lung node issue, he may have a more extensive chemo protocol than normal.

You may need meds for anxiety as well. As you are finding out, the carsgiving/support aspect of this is very difficult as well.

It sounds to me like he will be fine - he needs to process the whole mess. Being told that you have a life threatening disease is quite a shock. Add to that the need to make vital decisions rapidly, unrealistic fears and expectations and it can be a very difficult time - especially pre-treatment. It also changes something inside of you forever. It's been siad that "you can be cancer free but you are never free from cancer". He is entitled to his feelings which can ne very scary and also very dynamic in the early phases.If he is a cop then he is used to facing danger and he just needs to get into the right zone. It really doesn't take a lot of courage to fight this. The real trick to it is to take it one day at a time and stay in the moment rather than freaking out over what might or may not be, in the future. Once they get a treatment plan worked out things will get better I promise you.


Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
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Daisy, I can also totally relate to the fear of needles! Although, as Gary has said, he may find that changes by the time he's been through all this. The port will really help him not have to deal with needles very much during treatment (I had a port too) but also most oncology nurses are very very good with needles. I just went for a followup checkup and blood test to my medical oncologist and the nurse was so good with the needle I barely FELT it!

By all means ask for whatever meds he needs to make this more bearable. I had Ativan to take all through rad and chemo and, although I didn't take it all the time, it definitely helped me get through things (it also helps control nausea which I also needed all the help I could get with)! My medical oncologist's office was really good at presribing whatever was needed for pain and anxiety. if I had whined louder they would have geiven me even more serious drugs but I had this thing about wanting to be as clear-headed as possible which, in retrospect, was silly. He should find he's able to get some real help with this if he talks about it with his medical oncologist. He can do this. You can too.

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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I actually gave the MO a shopping list of drugs (which he gave me anything I wanted) so I would have them on hand and ready to go when I needed them - everything from pain meds, anti-anxiety, infection/thrush control, anti-emetics, etc. I really didn't want to have to go to emergency if something came up on the weekend or after hours.

I can vouch for what Nelie says about the oncology nurses - they are pros. I hardly even felt the IV's and I didn't have a port.

After a very short you realize your life depends on the needles and you just accept it - you don't have to like it! Almost without exception the people I met were pretty compassionate about that so it never reached the level that my fears gave it.


Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
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Daisy,
I haven't heard anyone comment on the center you mentioned, but just make sure it is a comprehensive cancer center. I truly feel my brother would be alive today if we had gotten him into MD Anderson to start with. Instead we went with a hospital in a large city about 3 hours from us. They had a cancer division, but little experience with oral cancer we later found out. Once he started treatments there we had to wait until they were completed to get into MD Anderson. My brother first noticed the sore on his tongue in Aug. 2004 and did not tell us about it until April 2005 when we insisted he go to the doctor. His first biopsy came back negative - even though you could see the cancer in his mouth. The Dr. said, "This isn't right," and they had to do a second needle biopsy of the tongue. This almost killed my brother. I don't know about everyone else, but I think this was the MOST painful part of all the procedures and my brother had an extremely high pain tolerance. Anyway, he had to have his teeth removed and these doctors didn't even start treatments until late SEPTEMBER 2005. That was 5 MONTHS after diagnosis. It wasn't until the last day of JANUARY 2006 we were able to get him to MD Anderson for surgery. That was 9 MONTHS after his diagnosis and 17 MONTHS after he first noticed something. The moral of this story? DON'T LET THE DOCTORS DRAG THEIR FEET. They wrote my brother off as soon as they saw he was stage 4 with a 4cm growth and activity in the lymph nodes. They said surgery was impossible. They were WRONG. They said nothing could be done for him. They were WRONG. By the time we had the courage to buck the system and figure out they were just buying time waiting for him to die, it was too late. They didn't even tell him he was terminal. He was in his hosptial room in September, asking me about homes for sell in the country. He wanted to start looking and find his family a little place. He wanted me to start calling people (the nurse practictioner had told me earlier that day he just had 5 months to live.) I had to be the one to tell him they had given him a terminal diagnosis because I felt he had the right to know. His doctor and nurse practitioner were very angry with me. I still do not understand this and resent being the messenger. Please find a medical team who will put your husband FIRST and make sure surgery is not his best option. I can't hardly believe surgery can't be done. My brother's case was extremely advanced and the cancer had wrapped around the jaw bone and more. He had 90% of his tongue removed, the floor of his mouth, upper and lower jaw, part of his throat and lymph nodes - all at MD Anderson in a last ditch effort to save him - he had already had his lifetime max of radiation. I've always thought if he had had the option of surgery first our story might have had a different ending. I understand every case is different, just make sure you are being given all the options and the best care out there.
God bless and stay strong,
Tonya


Sister of 32 year-old oral cancer victim. Our battle is over but the war rages on. My brother passed July 26, 2005. He was a smokeless tobacco user.
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Daisy - Ask your docs about "conscious sedation". They give a dose of this drug and the next thing you know, you are in recovery. Its a chemically induced amnesia and its FABULOUS! It is NOT general anesthesia, and has little or no after effects other than drowsy. I had my peg done that way, I had my pic line (port in the arm) done that way. Its the greatest. I had general sedation for the dental work. My teeth were lousy too and all had to be pulled.

Ativan - the drug of choice for scary treatments! Its relatively inocuous, and it really works. Get some. You husband can take them the night before, the morning of, and even right after those procedures. Pop one under the tongue and everything settles right down. I strongly recommend it. Your docs will know of it. Your husband is a brave man for dealing with the cancer. Tell him that for me. Being needle or procedure shy is rational, sane and sensible. Take drugs. Its a slogan I learned in the '60's, but it means a bit more to me now. We are with you both. 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.
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Daisy --

You are not being disloyal to your doctors if you seek a second opinion on diagnosis and treatment. MD Anderson is considered tops in the country for oncology and it would be well worth the effort it to go to Houston for a consult with them. Living in the east, we went to Memorial Sloan-Kettering for 2nd opinion (with blessing of Hopkins doctor) and were greatly encouraged by their input and the fact that the diagnosis (they re-read the path slides and MRI and CT scans, for example) and suggested course of treatment agreed. They also gave us some insight into an option which had not been discussed with original doctor, but which (when we brought them up later with our MO) was incorporated into Barry's treatment plan.

You might also want to ask about clinical trials of some of the new drugs (e.g. Erbitux, Tarceva) which are not yet approved but which are showing promise in trials for advanced SCC of the head and neck.

This will be a long road but there is hope, do not dispair -- many have come through this and (like Gary) have shown that doctors can certainly be wrong.

We are all pulling for you and your husband!

Gail


CG to husband Barry, dx. 7/21/05, age 66, SCC rgt. tonsil, BOT, 2 nodes (stg. IV), HPV+, tonsillectomy, 7x carboplatin, 35x tomoTherapy IMRT w/ Ethyol @ Johns Hopkins, thru treatment 9/28/05, HPV vaccine trial 12/06-present. Looking good!
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Thank all of you for your support and input. I hope you know how much of a comfort and a cheering section you have been. We are still working on getting these pre-treatment procedures completed. He will see the oral surgeon tomorrow for an evaluation and preparation for the removal of his teeth and the doctor who is going to do the lung biopsy was to receive his films for study/prep today. I've discussed a trip to MDA with him, and he is at least keeping that option open should he feel he is not receiving all he should. At this point we/he are very happy with his Radio Oncologist. We still haven't decided on the Medical Oncologist, but have narrowed the list down to a few who work closely on the team with the Rad doc. The Radio Oncologist has a patient advocate who is fantastic at making things happen when others seem to fail.

The ENT who made the original diagnosis may not be involved in his case much longer. Hubby has finally gotten over the almost complete lack of hope this idiot gave him, and is seeing that this is going to be a battle, BUT, it's a battle worth fighting and that he has a chance to win.

The ENT sent out a prescription for Valium yesterday which is what they gave him when he had the PET scan done. I didn't know about the Ativan but will take that up with the doctors asap. He seems to be getting more focused on the beating of this enemy thanks to many of your own stories and some folks in the local area who have undergone this same fight.

I know it's not the place of this forum for discussions of other cancers but I hope you don't mind if I share something else that has hit our family today. My first husband, who is the father of my 16 year old son, and who still remains one of my best friends, was diagnosed today with Non-Hodgkins Lymphoma, I believe it is B-cell. He is set to meet with an oncologist on Friday to arrange more tests to see if there is cancer anywhere else. It was discovered during an eye exam in the form of a tumor under his eyelid. They did the biopsy Monday and got the Pathology report back today. We have hopes that this was discovered early enough and that treatment will be successful. Unless it has spread his chances seem to be pretty good.

My current husband was diagnosed 02/09 and now my ex is diagnosed 02/22. My son already knows about my husband, as with his medications and symptoms, we couldn't hide it, but my ex and I have agreed it is best he not know about his dad, until we have a more definite prognosis. At this point I'm thinking about making a visit to my own doctor for a little sleep help and some stress relief. I'm a strong cookie, but now with two cancer patients and the care of my husband's 88 year old mom who fas fallen victim to multiple TIA's, I starting to think my sanity could use a little boost.

Again thanks to all of you for your advice and support. I'm hoping that some day when we reach the other side of this mountain - I'll be able to provide the strength and hope to others you have so graciously provided to my family. And to those who have offered their personal support, phone numbers, etc. I have passed that information on to him. He says he doesn't feel the need to call yet, but trust me, if he does, I'll give you a quick holler. Thank you for sharing your experience and knowledge. I'll be eternally greatful.


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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Daisy,
When it rains it pours, doesn't it? Is there anyway you can get assistance with your husband's mother? Other siblings? Home health? The journey you are about to undergo will require more strength than you ever knew you had - you can do it, but you need to reduce ALL the burdens you can as this will take everything you have and then some. I know you probably feel you can handle it all, but as time goes on, please don't feel guilty if you have to let people step in and take on some of the other responsiblities. Please take care of yourself. You're husband will need both his strength and yours for a long time to come.
You don't say what part of Texas you are from. I am in the panhandle. If there is ANYTHING I can do, please let me know.
Tonya


Sister of 32 year-old oral cancer victim. Our battle is over but the war rages on. My brother passed July 26, 2005. He was a smokeless tobacco user.
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