Hi all. Recently diagnosed with SCC BOT Stage 4 with numerous nodes on both sides. Have met with the medical oncologist and have an appointment on Monday with the radiation oncologist and the surgeon for the port and the PEG. I decided to get the PEG but don't plan on using it or at least using it very much. My plan is to force myself to swallow regardless of the pain. PET scan scheduled for Tuesday. I am just scared and can't quit crying. Chemo and radiation scheduled to start on or about December 3rd. How did you all get it together for your families and friends?

Dear Emilie,

My husband has almost exactly the same diagnosis as yours. He just started radiation this week and had his first session of chemo yesterday. I think I understand what you must be feeling right now. We have decided to tell our friends and family the facts as laid out for us by the doctors. I have found that each time I tell people about this, it helps me to face it a little better. This forum has done a lot in teaching me what I need to know about oral cancer. Knowing the facts is one way of wresting control back from the disease. Good luck and lot of hugs to you.

Sorry to hear about your diagnosis. in 2009, at age 48. I was diagnosed with cancer in the tonsil, BOT, Valleculla, and three bilateral Lymph nodes. I was so positive, and thought I was stronger than cancer, so I told some like it was a cold. It proved to be much more difficult than that, and had four more recurences after, and more humble, realistic now. I was pretty independent, and lived alone, so no spouse, children to deal with, which is easier news wise, but difficult to do it alone all this time, and you will need all the support you can find either on line or in your personal life. Unfortunately, I did not go to any blogs, sites, but did my own reaserch for a short while, since after my chrmo I was no longer possile to do for a very long time..1 year. I guess there is no right or wrong way to deal with it or tell others, just what works for you, and gets you through this treatment. All the best.

Hi Emilie - You've come to the best place to be for all the latest and accurate information, plus lots of support from people who have travelled the road you are on now. It's great that you quit smoking! Yay! You already done something really difficult to do and looks like you are all set with a plan. The waiting for anything to happen is always the worst time but it helps if you can keep busy and try to think of all the ways everything can go just the way it's supposed to. If the negative thoughts start to creep into your head, just tell them to cut the chatter and force yourself to think of other more positive things. Tell your doctor how you are feeling - he might be able to prescribe something to help lessen the anxiety. Are you at a Comprehensive Cancer Center (where a team of doctors get together to help you decide on the best approach for your particular needs)? Have you already had surgery? There is so much really good information that you can check out on the main pages of OCF and it can help you formulate any questions you might have for your doctors or for anyone here. I'm sure others will be along with experiences that more closely match yours and can give you more suggestions. When my son was first diagnosed with SCC, just waiting for his surgery date was a crazy-maker but we did get through it and you will too! Dec 3rd will be here soon, so hang in there and there will be lots of people to help you through it. Come back often to let us know how you are doing.

Emilie

After 5 years and three bout with cancer, from my point of view, the task of "getting it together for family and friends" should really be their task to get it together for you. But I hear you as that is not what happens. Take a look at our long running thread: Don;t you hate it when for a quick glimpse of how people react. People want you to be positive and upbeat, like all the cool cancer patients in the TV shows: you know : Noble, with a new appreciation of life. strong, etc. don't you just hate it when thread Everybody just assumed that I was "a fighter and too tough to get beaten" so I really didn't have to get anything together but only smile and nod.
It is scary and feel free to worry and cry here on the board. We know just how scary this is and we all have had very very dark nights of the soul.
Survival is doable and you can beat this.
Keep the Faith
Charm

Welcome Emilie,
My husband was just diagnosed with SCC BOT Sstage III. We are waiting for his surgery which is scheduled for Dec. 5th. My suggestion to you and what worked for us, is to tell everyone exactly what is told to you by the docs. And then in te next breath tell your family that you can't do it alone and that you will need thier help. It's really okay to ask. That's what family and friends are for. It's not an easy treatment. Rad and chemo make you very ill. You will be thankful in the end that reeached out to them and they were there for you. I wish you well and hope everything works out.

All,
Thanks for the kind words. I guess I have had to be strong for so long...Single Mom my son's entire life, Caregiver for mom who had vascular dementia for 10 years. She passed last year and I finally thought my life was going to get back to "normal". Then the cancer diagnosis. Luckily I have the full support of my son who lives with me. I am going to try not to impose upon him too much, but I know I will have to at some point. He is 21 and even though he won't say it, I know he is worried. I have been reading many of the forum pages and it is so nice I am not alone. Thank you all.

Of course you are not alone, Emilie. We are all here for you so please come here as often as you need to. I'm glad your son is with you and I know he must be worried. That's what people do who love each other. I worried about my son when he was in treatment and tried to hide it from him so I could put on the "Happy Face" but I found out that he worried about me, too and all that he saw me doing for him. I set him straight, though and told him that the things I was doing for him were exactly what I so very much needed to do, to keep busy so I wouldn't be sitting in a corner someplace having anxiety attacks! So, do rely on your son, because I'm sure it will help him to keep busy and stay positive and to feel that he is really making a difference in helping you get better. As others have said, now is the time to let family and friends in to help as well. Make a list of the things you might need done, like rides to Rad Tx, picking up prescriptions, doing laundry, whatever. That way if somebody says "Is there anything I can do?" you or your son can show them the list and they can pick what they feel comfortable doing. People do want to help and sometimes they just aren't sure what you need or what they can do for you. Hope everything goes well with your appointment on Dec 3rd.

Hi Emilie, I know exectly what the "strong" steroetype is all about. I had all sorts of people tell me that "felt sorry for cancer, 'cause it picked on the wrong girl".

Those are the people I tend to smile and nod and say "damn straight" to.

The people who know you, and who really care will see your stress. Let them. And if you don't feel like you can, cry in the shower - that's what I did. Or cry here. We all get it.

Emilie,

Since you are committed to not using the PEG "unless"...then I would recommend you consider forgoing the PEG and if you do get to that point of "unless" then you can get a nasal tube like I did. I't totally painless, nonsurgerical and only takes a couple of minutes to feed down your throat and you can even pull it out at home when you don't need it anymore.

Emilie, sorry to hear about your diagnosis. But welcome to our little band of heroes, of whom I consider myself a junior member. You are among friends who will support you to the nth degree.

Charm's post above is terrific and, as you get to read more of his, only indicative of his level of intelligence and knowledge. But in fact everyone here is great.

Ask us any questions. Rant at will. Send IMs. We are here for you.

I can only imagine how scared you are and ditto your son. If this had happened to one of my parents at that age I'm not sure how I would have been able to handle it. But he can come on here and post too. We have lots of care givers and we always welcome them equally.

It's true: your friends and family need to get it together for you, not the other way around. Most do. It's human nature. But never forget you have another family here.

David's advice about the PEG is excellent. As a point of information (we're all different so keep that in mind) I did not get a PEG during radiation and had a very difficult time keeping my nutrition up. We all tend to lose some weight during treatment. I found that the sores in my mouth were so large and numerous that it made it extremely difficult to swallow even water. But again, your experience may be different. So if you're going in with the strong, positive attitude to tough it out through the pain, I admire you and hope you can. And then you always have the nasal tube option if you need it.

Keep us posted every step of the way.

Courage!

(Oh and it's a good idea to have your thyroid levels checked before rads, as that can mess with them as it has with many of us. Also assume you're seeing a dentist pre-treatment for decisions about your dental health and flouride trays; if this is all Greek to you, ask your RO - radiation oncologist - when you see him/her tomorrow)

At a recent SPOHNC meeting, the coordinator, who is a speech pathologist, said the trend now is that more doctors are advising not to have a peg tube placed. I guess it's due to some having to use it permanently or becoming depedant on it longer than necesary. Anyway, one was recommended to me three years ago, what I read to do also, and even have my 2nd one, which I doubt I could have done without both times.

Well it seems it's quite different in this part of the world.
We were told that patients who have a PEG placed prior to treatment starting do better in the long term. They lose less weight and consequently have a better outcome.
Kris had his PEG placed prior to rads and chemo, they would not start without it in situ. Despite this he was strongly encouraged to continue to swallow as much as he could. In fact we only used his PEG to supplement feeding on 2 days of his treatment.
Tammy

I was told I had to have it but it was my choice not to use it... It didn't help that I couldn't stomach the formula. In the end I got by without it. Welcome. You'll get through it - you're stronger than you know. Hugs... We'll be here to help.

As we learned from the PEG wars, oncology doctors disagree on whether a PEG should be routine or exceptional. The concern is that swallowing recovery can be compromised or delayed. In the past, I've posted excerpts from a conference of European doctors that they think PEGs should be avoided if possible. Others here have reported the exact opposite, their doctors actually required them to get a PEG even when they could still swallow and eat fine. My CCC radiologist was in the no PEG (unless significant weight loss adverse to health).
I remain a staunch advocate for those who like myself, found a deep psychological boost and satisfaction in getting through TX without a PEG. Others, perhaps a majority, are big advocates for getting a PEG as a matter of course. It's ironic that I'm on a lifetime PEG when I resisted it for so long.
Charm

Truth be told, I could lose a 50+ pounds and be down to the "normal" people range. I think I will get the PEG, so even when I lose the weight, the nutrients I get in are the right nutrients, not just what I can get past my throat. Still plan to swallow as much as possible. I bought a Ninja processor so I can soupify just about everything. Can't afford to lose muscle weight.

Hi Emilie,

As you can tell from the opinions stated above, there is no right or wrong option here and whichever one you choose, the most important factor is that you are getting plenty of nutrition & fluids in during your treatment.

My wife is currently in her last week of treatment and has managed to get by without a PEG but the doctors are recommending a nasal gastric tube just in case as the few weeks after treatment are supposed to be the most difficult.

As we end the near of our treatment, we wish you the best of luck with your upcoming and encourage you to stay positive and keep one step ahead of the curb!

Even though you may have some weight to lose, try your very best to not lose any. It will make this a whole lot easier on your body if you maintain your current weight. When things dont taste right and it hurts to swallow its awfully hard to take in enough every day. Right now you should be eating all your favorites and not worrying about gaining a couple pounds. Go into this without having any cravings or regrets. Eat all the high calorie, spicy, chewy foods you like. Weight loss is discouraged.

My doc told me his goal was to keep me at my same weight from beginning to end. It didnt happen and I lost 65 pounds. I also ended up hospitalized more than once for malnutrition and dehydration.

Emilie,

Whether or not you use the PEG or the Nasal Tube, you control what nutrients are put through them.

Just to weigh in, my doc was opposed to the PEG at the start. As it turns out, rad is on hold for me, but he made it clear that he did not want me to start with any tubes. The NG was disaster for me in hospital and had to be removed early. You might want to check to see if you have any latex allergies in advance.

I now have the Port and PEG in place. Ouchie. Both my Medical Oncologist and Radiation Oncologist said I would need the PEG. Luckily I don't have an latex allergy. The doctors are amazed I can currently swallow anything really solid like meat. At this point it just sometimes sticks. So, probably between the pain and swelling I will need the PEG at some point in time. Need to keep the nutrients coming in. Radiation starts on Monday and Chemo starts on Tuesday.

I am so glad I found this forum. It has been a source of great information and support.

Emile, glad you have all in place, and goodluck with treatments next week. I saw in your profile they are doing 3 additional months of Cisplatin, adjuntive therapy, after Chemoradiation? I have not seen that, and curious why, if you know? I know radiation continues to work for another 6 weeks after completion, and wonder if the chemo is being used as radiosensitizer for this time?

I'm not sure why they are doing the additional 3 months. Perhaps to knock out any stragglers. Thinking it had spread to other areas of my body. Originally they thought I had multiple nodes involved in my neck. Almost all from my clavicle up. The PET just showed 1 with no spread to the rest of my body. My other nodes were doing what they were supposed to be doing by fighting the cancer off, which might explain their swelling. That was his original prescription. Guess I'll see what happens as time goes along.

Thanks, and good luck again.

Good luck - so glad all those nodes weren't involved. take care. Are you at a ccc?

Bette,

My husband is scheduled for partial glossectomy on the 17th of December with removal of all lymph nodes in neck. Would love to keep in touch with you to see how things go.

Hi Emilie

I'm new as well, 40 y/o and diagnosed with Stage 4 Oral Cancer. My Cancer started out as a sore on my tongue. Developed into a bigger spot and once biopsied - (+) Cancer. i had my surgery, which was interesting, I thought it would be a few small incisions but it ended up with 2 large incisions and drain. After surgery it was decided that because 3/20 nodes were positive = Chemo/Radiation. Just completed my first week of 7, not bad. Just developed a lump near my jaw which I understand could be drainage from lack of lymph nodes. Otherwise, you stay strong and keep your head up. My Mom was going through Cancer when I was 21, your son will be there. Sons LOVE THEIR MOM. I am sure he loves you, especially through all your sacrifice.
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Ron