Hello, my name is Ray and I am 49 years old. I found out on December 22, 2006 that I had Squamous Cell Carcinoma at the base of the tonge. The cancer has spread to the node on the same side. After a pet scan we know that the cancer has not spread futher yet. I am stage 3.
I am starting treatment on February 5th (Radiation) with chemo to start on the 6th. I am looking at 33 treatments of Radiaton (5 times a week) and 3 treatments of Chemo (every 21 days). My doctor said it is very treatable, but the only talk of surgery was a 50/50 chance the node might need to be removed after the treatment is over.

This is becoming a very scary time for me.
Cancer is something that I know nothing about, I guess I will get a full education on the subject in the future.
Everything is moving so fast.

Ray,

My sister is also 49 and had a very similar diagnosis as you-I just posted that there is no trace of her cancer left as of today. I will say that one of her nodes was a bit enlarged initially so they treated her with aggressive protocol. She has not had a dissection as many here have, but there is a lot of information to be learned on that subject. Use the search engine at the top of the posts page and you'll find many posts from several "experienced" people.

Just being here is a good place to learn and help. You will be on my thoughts!

Hi Ray,

Your diagnosis is identical to mine 2.5 years ago. Your treatment plan is similar to mine. It will be hard for a while, but the treatment is doable. Do you have a care giver? If you want to discuss, I will gladly give you my phone number. I'm in the Raleigh area.

Ray, Just wanted to say hi. I am also 49 yrs. old and have the same cancer with one node. I had the nodes removed only because that's how they found I had cancer in the first place. But I've been told it isn't always necessary. This site is great for information, and the people on this board are awesome with there concern and help. We will all try to help you through this journey.

Hi Ray, I had cancer on left side of tongue at age 44, 4 1/2 years ago, a pet scan was done because my oral surgeon thought the cancer had probably gone into my lymph nodes, which it had, two of them.....I had surgery and radiation and here I am today.....I was staged at IV....PM me if you want any specifics.....Take a deep breath and remember we are all here for you!!!! Carol

Hi Ray,

I am new to the site but not new to your situation.

I had something similar and my story is in the introduction section and was posted yesterday.

I did not however have Chemo. The rest I can walk you through if you need it. Let me know and most importantly, keep your sense of humor during the whole process. It is the only thing that kept me sane (along with my wife )

Good luck and fight hard.

Ray,

I just finished my Tx appx 5 months ago and as you can see (look below my name at the bottom) my Dx was almost exact.

There is plenty that you should know before your Tx begins that will be of great help. I have posted below a post that I wrote about a month ago for a fellow patient re what you can expect from your rad and chemo Tx. You didn't mention the type of rad or chemo. My experience is based on IMRT and Cisplatin. Here's the Jan 1, 2007 post.

To, BB and Betty,

Hope this may help you in your journey through the dark tunnel. You will emerge.


Before I start they say that everyone can react differently to the same Tx but my experience in reading 1000's of posts from fellow patients is that we all have bad side effects but some have it worse than others. Judging by my readings I fared better than most and I think my somewhat nasty disposition helped me when I needed it most. That said......

It was probably the worst concentrated time in my life, both physically and mentally. I think the mental part is at least 50% of the battle. If you think about it, your neck region is the worst place you could be radiated. They tell you that you must (AND YOU MUST) drink at least 48 ozs water and 2000 cals each and every day. Then they burn your throat so you can't swallow or even eventually talk. So then they give you pain meds but the pain meds make you nauseated so they give you nausea meds and even they sometimes make you nauseated. All the while the chemo makes you nauseated. I also opted for no tube and I'm glad I did but it made it sometimes impossible to meet the daily goals. They basically set you up so that you can't win this battle but you will find your own way that works for you. The nausea was my worst enemy and they couldn't find anything that worked for me. I could open up a small drug store with the meds I filled and took one or two pills. At the end I finally had had enough and stopped taking all meds. I swallowed with the pain but at least I stopped the nausea. My nausea got so bad that it was easier to throw up than to breath so even after I stopped all my meds I went weeks fighting a gag reflex every time I swallowed something. Sometimes I literally held my mouth shut after swallowing just so I wouldn't throw up. It was nasty but that's what saved me and got me over the hump, so to speak.

Here's what basically will transpire:

The chemo may make you sick. The first bag I rec'd had no effect on me but the last 2 hit me hard. That may have had something to do with the weeks of rad I had rec'd by the time I got the last 2 bags, I don't know.

The rad will not effect you until around the 3rd week. Your taste will rapidly go away. At first things tasted bitter, then nothing, then I could taste some sweetness but not all. To this day choc tastes bitter.

Your throat will get sore and you will soon be on soft foods and liquids. REMEMBER your goal is to drink water (48ozs for me) and "food" (2000cals for me) each and every day. They will tell you and your caring friends and relatives will tell you all sorts of things to try. I found Carnation Instant Breakfast VHC which has 560 nutritionally balanced cals in a 8 oz can. That meant I only had to swallow 4 cans of the VHC to meet my daily goal. A life saver when your throat burns like hell. Unfortunately I didn't discover the VHC until 2 weeks AFTER my Tx ended but I'm glad I did and I still use it.

You will be given all sorts of meds to combat the pain and nausea. Don't give up if at first they don't work. Good luck on finding the correct combo.

I did not keep up with my daily water and "food" because of the nausea and then I would get dehydrated and then constipated. Guess what the side effects of those are...Nausea. I ended up in the ER 3 times to get IV fluids. Don't think your body will go for days with little or no food and water while being attacked with rad and chemo without shutting down. Your body will shut down if you don't feed and hydrate it so do your very best to keep up. I found that a lot of people visited the ER during Tx.

I lost hearing in the high frequency range due to the cisplatium and I have been told it's probably permanent.

I lost some hair on the back of my head and I won't have to shave below my chin ever again. I don't have fair skin so the outside of my face and neck faired a lot better than most re sunburn.

Your saliva will began to shut down and thick mucus will increase. I went for a few weeks trying to spit out the thick stuff with no thin stuff to help. I would wake up choking on the thick stuff and when I went to spit it out I would start to gag and then get nauseated. The thick stuff will become less of a problem as the dry mouth becomes more of a problem.

You will start to get really weak and may sleep or just feel like lying around. I stopped working all together for about 6 weeks and just laid in bed all day. Really boring time but I just didn't have any energy and I had the pain, nausea, dehydration and constipation, etc. Your strength is zapped as well. Taking a shower was equal to running a marathon. I stopped driving and really became very anti social. I just didn't want to be around anyone except my wife who as my caregiver and business partner I credit for saving my life. There is no way I could have gone through Tx without her. She gave me the caring love and the tough love when I needed it.

I lost 30% of my body weight and I couldn't afford to loose anything. I was very physically fit going into Tx. Nonsmoker, casual drinker and exercise nut. I road my bike 100 miles a week avg 20 mph with bike clubs but the TX still clubbed me over the head.

I felt like I was in a dark tunnel and I didn't come out of that tunnel until the 3rd week AFTER Tx ended. That's when I started to drink 3000 cals a day and started to feel almost human. My strength took several months to come back. My taste is almost tolerable but the dry mouth is still horrendous.

I am just 4 months out and am able to work from 9 to appx 7:30. Not as much as I used to but better than most at my stage. I am mentally pretty much back to normal and my nasty disposition has come back but I'm not as nasty anymore. When you hit the bottom which I did more than a few times I made many promises and I am trying to keep them. This is a humbling experience.

Again, you may have more or less problems with everything I mentioned but overall those are the main side hurdles you will face.

Questions ?

Something else that is helpful for future posts is to go to your Profile (at the top of the page) and add a signature and along with your signature you can add your Dx & Tx info similar to mine and others. This will display with every post and will help the reader in responding and you won't have to repeat yourself either.

Ray,

If I didn't know better I would think that I did your post. I was diagnosed (Emory) in April of 2006 and suspect you are also an Emory patient. Mine was right side base of tongue squamous cell. I began radiation and chemo the week before Memorial Day and finished up in mid-July.

There is so much I would be willing to speak with you about as I had a lot of "on the job" training with it. Cancer was something I knew nothing about as all of my close relatives died of heart problems. No one could have been more scared than me about what would be coming.

If you would, send me an outside the forum direct e-mail so I won't clog up the site so much. I will then get back to you from there.

Bill D.

Hi, Ray, from the above, you know that there will be lots of good support here for you - and lots of good information. Since I am on the caregiver side of this equasion,do you have a support system at home? If you do, please try to get her-him-them- hooked up too. It's much easier to walk this road together. Amy

Hi, My name is Vicki.
My husband was recently dx with StageIV base of tongue cancer, with mets to 3 lymph nodes. Age 60, prev smoker.
He previously had 3 neck biopsies, the earliest one done in October 2004. The most recent one in November 2006 came back positive which eventually led to them to finding the primary.
We are currently in the phase of meeting with oncologists to decide the treatment plan, which will more than likely me IMRT with concurrent chemo, and possibly brachytherapy following that.
He will probably be starting therapy in about 2 weeks.
No plan for surgery to remove tumor. It is small and not well seen on the MRI and had it not been for the PET Scan the surgeon said it may have gone undiagnosed. But because of the delay in diagnosis and the postive lymph nodes, it is very scary.

Vicki,
Take a deep breath, and move forward. It is scary, absolutely. It is also treatable. Where will your husband be treated? There are a lot of comprehensive cancer centers around North America; make sure that he's being treated by people with experience in head and neck cancers.

Oral cancer is relatively rare; there are a lot of Doctors who simply don't see it often enough to be able to deal with it properly. Keep coming here...we've all been down the road before, and we'll help in any way we can
Wayne

Welcome, Vickie,Yep, we know it's scary!! You all will have lots of terminology and medical jargon thrown at you over the next few months. It a fact that one of the roles of a caregiver is to figure out how to keep up with all the "stuff" that's going on. Hopefully, you will use this site ad the good folks here to best advantage, because you will get great help [and comfort] here. Now's when the tough get going. Amy

Thanks to all for the great replys.
My treatment starts on the 5th.

Ray C

Hi Ray,

Welcome, Yes, things do go fast once they have have you scheduled. As you can see there is a lot of information here. It will help you get through this process.

Keep posting and know that someone will answer. I did not find this site until I was about 4 months out of treatment. So you are very lucky to have found it as you enter into treatment.

Not sure if anyone has said anything about a Peg Tube to you, but it is a must. It will help you keep up good nutrition and liquid intake. Some people here could eat all through treatment. I could not, so had to use the Peg Tube. All during your treatment make sure you swallow something. I am sure your Dr.s will explain that, but I wanted to mention it.

Try and take one day and week at a time. Keep reading it will help answer a lot of questions.
Take care
Diane

From all my reading, everyone says the tube is really needed. I know some people do ok without it, but I just could not take the chance. I got mine on the 29th. It feels a bit strange, but I am sure I will be glade I went ahead and got one latter down the road.

Thanks,
Ray C