Hi. Glad I found these message boards. I am 46 and my hubby is 55. My husband has never even tried a cigarette or tobacco products. He does have (1) "adult beverage" every evening after work. The Friday before Christmas my husband woke up and noticed a large lump in the side of his neck. He went to the doctor who ordered blood work, CT Scan and follow-up with the ENT doctor. Blood work was normal but the CT Scan showed the mass in his neck as being 2.5 cm by 3cm and some thickening at the base of his tongue. The ENT specialist drew fluid out of the mass in his neck and the results came back malignant. This past Tuesday my husband had a modified/radical neck disection and lots of scoping done. The mass in his neck was a malignant lymph node. He removed that and the lymph nodes from that side. The primary tumor is at the base of his tongue and everything else looks clear. He said the tumor is a small lesion and was caught fairly early.

I feel like my head is spinning and I am in a fog. My husband takes great care of himself - vitamins every day, salad every nighT with dinner etc. He is home and recovering from the surgery. It is very difficult talking and swallowing. We have a follow-up appointment next Tuesday and hopefully he will have all the pathology reports back then. He told us that he won't need chemo but will definitely need radiation and to have a feeding tube put in before radiation starts. Is a feeding tube always necessary and how long does it stay in? I know I will undoubtedly have many, many questions. I appreciate all your help. I just lost my mom September 2007 after a long 3 1/2 year battle with Pancreatic Cancer and I am scared to death. I don't really know anything about this type of cancer. Thanks in advance.

Hi you have definately tapped into a pool of knowledge, experience, caring and love. It is a wonderful place to ask questions, vent, laugh and a place to feel safe. It was probably the best place for me when I was diagnosed. It is ok to be scared but more importantly to keep one foot on the floor. If you read some posts there are many many happy survivor biographies. I am sure there will be a lot of people with more experience chime in. All I can tell you is that most here will agree waiting is just the one of the hardest tasks to do. And what I was told to take one moment at a time, one day at a time...Every day is a new day!!!

Welcome to OCF. Glad that you have found this site. There is tons of info not just on the forum but also on the main pages of OCF. Both areas can be easily navigated with the search function. You will find lots of support here to help you along. Being a caregiver isnt an easy job. Take a notebook to the appointments and take notes, sometimes the info can be too overwhelming to remember.

As far as the feeding tube goes. That can be a hot subject around here. Some swear against it while others have found it a life saver. The length of time its in is all up to the patient on how well he recovers and can properly eat. Everyone responds to treatments differently. What works for one might not be the best for another person. I used the feeding tube for about 1.5 yrs and recently had it removed. For me, it was a necessity.

Sorry about the loss of your mother. Im sure it wasnt easy for you with her fighting for that long. Please feel free to ask questions, we are here to help.

I recall seeing some sort of nature documentary where a lake in Africa was drying up and all the frogs were gathered on the damp edges, with snakes gliding amongst them -- The frogs are all frozen in fear of the snakes and suddenly one frog moves -- A snake pounces, but misses the frog that moved and hits one of the stationary frogs instead -- The look on the frog's face is obvious -- It wasn't ME! I didn't move, HE did! Take him, not ME because I am following the rules and you can't punish ME for that!

I just rechecked the bottom of my foot and there are still no warranties for this or any other state!

Slim,

See my Signature Line below. I also had BOT primary and mets to my nodes. I didn't have a ND nor did I opt for a Peg. If he does get a Peg he MUST exercise his swallowing muscles each and every day or those muscles may forget how to. I am a little surprised they don't recommend chemo or at least give him the option to add it. I would really ask them what their thinking is. You also need to look into HPV as that's what caused my cancer and I was a non tobacco user.

We all understand your's and your husband's mental state right about now but this cancer is beatable so take a deep breath and be thankful you found the best site in the world to help get you guys through this Tx and the recovery.

Ask away or just vent.

Welcome Slim and my deepest sympathy for the loss of your mother. It is a normal reaction to be afraid, but you have found a very good place to get answers that will end some of your fears and the support that will make you strong enough to fight those fears.

Is your husband being treated and a Cancer Treatment center? Remember that it is important that you understand what the doctors say and that you have confidence in them. If you don't get another opinion. I read a recommendation that you start a notebook that goes with you to all of your appointments for notes, questions and instructions. I did it and still take it with me to each appointment. If I think of a question today for a doctor that I am seeing in two weeks, I will write it down now so that it does not go unanswered.

It must be very difficult to see someone you love go through this battle, but take care of yourself and be strong. This is a battle that he can win.

Patty

Hi Slim,

Welcome to OCF. LIke others have said..you will find many wonderful people here with great information. I wish you and your husband much luck. Always ask a lot of questions. Knowledge will let you know what questions to ask.

Suzanne

Hello Slim, Sorry that you have had to find us. Could you clarify: Did they also remove the primary tumor (and part of his tongue)? Thanks, it helps when we know what has been done.

Some of us did do radiation without PEG feeding.

Take care

Hi, Last Nov. I was in the same place you are right now. Shock, disbelief and totally freaked out. We also are into organic gardening, hiking, vitamins, herbs, etc. How on earth could this happen to us. I've come to the realization that cancer can and does happen no matter what. It still seems unreal at times. I often feel like I'm in a parallel universe, but then I realize that this is our new reality. Unchartered territory.
My husband, Richard, also had an enlarged lymph node. The first needle biopsy was negative, but when they retested 6 wks later they found SCC in the node. After subsequent tests they found a small mass at the base of the tongue. All the other tests were negative and the RO told us that the radiation would shrink the lymph node and get rid of the cancer.

We are doing 3x Cisplatin and 7 weeks of IMRT rad. Richard just finished his 3rd week with 4 more to go. Believe me, I'm counting the days. I know he will still be recuperating after that, but not having to go through any more treatments will be wonderful. I'm surprised that they are not doing chemo. I always thought that with a node involved that was the standard treatment. Gather as much info as possible from this wonderful site before you see the doctors. Knowledge is power and you will feel more in control and informed. Richard also has a peg tube and we are very glad for it. Your husband will adjust to it and then he'll be able to "eat" when his throat is too sore. As long as he continues to swallow he'll get through it. Ask me any questions. Geri

Hi Slim - I'm another newbie and scared too. Husband was diagnosed 12/19/08. This forum is the best thing you could have found. I cried and googled for a week before finding this. Since then I've learned more from the fine folks on here than anywhere else and I've stopped crying and started fighting. As others have said, get a notebook, write down everything, keep every doctor's card, pamphlet, etc. Ask questions. The folks on here are wonderful with their answers and just go one day at a time.

My husband has had a feeding tube from the day we brought him home from the hospital 4/7/08. He still can't even take a sip of water. He was going to a swallowing therapist, but right in the middle of it all, he developed another malignant growth in his mouth. He stopped seeing the therapist and I am so worried that he will never swallow again. I worry that his reflexes or muscles are getting worse. I do thank god for the peg tube. What would we have done without it ? Best of Health to everyone on this board. I pray for each and everyone of you daily.

Hi Slim, I'm new here also, sadly not very new to the disease, tho. It's simply amazing how when one day not that long ago, most of us had not even heard of head and neck cancer, let alone knew anything about it. Thank goodness for the internet, we've been able to learn as we went through it, especially with the help from others that had gone before us. I'm one that believes in the PEG, not that I was given a choice in the matter but I would have probably starved to death without it. About the 3rd week into treatment, I could not stand to eat or drink anything. I even detested the taste of water. I took nothing by mouth for about two months. In doing that, I did have to learn to swallow again but I managed it although things still get stuck if I'm not very careful. The two pieces of advice I have to someone getting a PEG is to ask you to try to drink something every day, no matter how bad it tastes or feels, it'll really help in the long run. Also, after the tube is inserted, there is some pain, especially when lying down. Holding a pillow to your stomach while doing it is alot more painless.
I'm so sorry to hear about your mother. I lost my mom in '94 to gall bladder cancer. Although the grief has eased, I still get upset when I see a mother and daughter out shopping or having luch together. I really miss her. My prayers are with you, Carol

Hi, Slim. There are 2 things I couldn't imagine going through this without. One is my wife, Linda, who went to every appointment, took notes on everything and asked questions that I was too numb to think of. The other is the peg (feeding tube) with which I still lost 50 pounds but would have been in very dire straits without. Also, seriously ask about the chemo option. Together with the radiation it has a much better chance of stopping the spread. Having said that, obviously your doctor will know better than I do but still, ask. Best of luck to you both, stay strong.

Different people are affected differently by a PEG -- Personally, mine have never given any pain after the first couple of days -- Depending on where the inner end of the PEG resides, some may work better lying down that sitting or standing.

Even if one loses the ability to swallow, it is not irretrievably gone, just forgotten.

It seems that everyone reacts to treatments a bit different. I was told before I started treatments about peg tube and other issues I may have. They wanted to think about staying near the hospital for the last few weeks of treatments. I live about 70 miles from Duke. After the 1st week or 2 my ENT, Rad, Chemo drs. were talking to me and prdicted that they were 95 % sure I would not need a peg tube and would not have "serious" issues. They were correct, did not need a peg tube and was able to drive myself to almost all treatments everyday. Later I asked how they knew.....the answer was - based on their years of experience they can tell. They did not know all of the reason but some it is based on "good genes". Some patients and their bodies accept the Chemo, Rads better than others. I still ask why I had an easier time, very quick recovery, etc. No good answer. Bad luck of the draw to get get SCC ? Good luck of the draw to handle treatments well ?

There are people on the board they have had easier time than others but it pays to be prepared for the worse and pray the best happens. This forum was a great help to me in understanding the potential isssues and having a plan and resources in place to address what may happen.

Cheryl - oh my - you are very new at this since his diagnosis was just barely a month ago. I relate to your reaction exactly. I cried and cried while trying to find a place to get answers and information on people with head and neck cancer. Today, as you, I've stopped the crying (husbands diagnosis was 10/28/08) and I've begun an intense search for anything useful to help him fight this that I can find. What was your husbands diagnosis, grade etc.? Mine was T2N2bM1 grade 2 infiltrating moderately differentiated cells, which is very advanced. :-( The chemo has been tough (Taxol and Carboplatin) but he is getting through it one day at a time. The joint pain is pretty intense. Hope to hear from you soon......Brenda S

I am sorry to hear about your husband. Head and neck cancers are so difficult to deal with. Firstly I must say that its a big positive that your husbands cancer was caught early, that greatly affects the prognosis. Second on your question of the feeding tube, my mother was diagnosed with tongue cancer in November - it had been there since May and the hospital missed it - but thats another story! She had a feeding tube fitted before her op to remove and reconstruct her tongue - she is 8 weeks now after the op and due to undergo radiotherapy - she stil cannot swallow more than 3 sips of water an hour- she has not eaten or drank for 8 weeks - the feeding tube is her life line. When this is initially put in it is very painful, but now its fine. The surgeon told us that they saved the hypoglossal nerve which controls swallowing, but she has still been told that she may have to endure tube feeding for the rest of her life - doubtful, but very upsetting, but at least she is still alive! Your husband will be very sore undergoing the radiotherapy, thats why they need the feeding tube, but all should return to normal after the effects of the treatment.

Hi. Just thought I would type a quick update on hubby. We met with the Radiation Oncologist this past Thursday. He said John is considered Stage 3B or Stage 4. John's right neck disection is healing really well. His neck is still stiff and numb but the incision looks really good. Since John is only 55 they want to treat this agressively. He will have 7 weeks chemo - Cisplatin, 7 weeks (35 treatments) IMRT radiation and he strongly suggested the PEG be inserted before treatment. He had a PET scan done on Friday, we have an appointment with the Oncologist tomorrow and an appointment with Interventional Radiology about the feeding tube on Wednesday. This is going to be a tough treatment but I KNOW John will beat this. I asked about recurrance and statistics and that scared me. Having lost my mom a little over a year ago to Pancreatic Cancer, I have a hard time not going to the dark side with my thoughts. I will stay positive and we will beat this. Thanks for listening. John has already lost 9 lbs. in the past 10 days so I know the PEG is probably the best course of action for him. Wanda

Since John is only 55 they want to treat this aggressively.

I don't know what age they wouldn't treat this cancer aggressively as this is pretty standard as far as Tx goes.

How often is he going to get Cisplatin? I had 3 large doses but now the trend (and better) is to break it down into smaller, less side effect laden weekly doses.

David,

She said "7 weeks chemo-Cisplatin" which I take to mean weekly.

Deb

I think her surgeon might have meant that he'd be a less likely candidate for chemo/radiation if he were in late '70s or '80s -- Less able to tolerate the treatments and less likely to enjoy the benefits.

[quote=Pete D]I think her surgeon might have meant that he'd be a less likely candidate for chemo/radiation if he were in late '70s or '80s -- Less able to tolerate the treatments and less likely to enjoy the benefits. [/quote]

Thank you, that is what I meant.

Cold season, tax season and restaurant season all rolled into one.

Hi Slim,
Welcome to this site. If you every feel alone you know where to come. You will have some much support here from people that know what you are going through. You have been given some great advice, just take it one day at a time. My prayers and thoughts are with you.

Sincerely,
Tammy