Hi there, I'm Dave. I'm 28 years old. A month ago I was diagnosed with Stage 3 SCC of the oral tongue. Biopsies have shown my lymph nodes to be negative, though they and some areas near my clavicle lit up slightly on a PET Scan. Currently there seems to be no major spread, just the tongue tumor. I've been seeing doctors and my treatment has been set for Chemo via Cisplatin & Erbitux in combination, along with Ethyol (amifostine) shots daily in conjunction with 28 sessions of IMRT. They consider this aggressive therapy.

Just this week I went for 2nd opinions at UCSF. They felt surgery might be an option, and the surgeon I saw today felt he could pull it off (tumor is roughly 4 cm2 and extends to "many margins", the first surgeon I saw said no to surgery). He said I'd still need to undergo radiation afterwards with about the same dose. The surgery he said would be 14 hours long with a resectioning of tissue of the tongue from my forearm. He said I'd need a trach for a month or so, and would be in the hospital a minimum of one-week. I'd be feeding through tubes for quite a while and would probably need some speech and swallowing rehab/therapy. This seems daunting to me, but I can't decide if it's the "smartest" move or not.

My gut feeling is to go with rad and chemo. Couldn't surgery be an option after that if the tumor was still present, but hopefully smaller? I mistakenly didn't get that question answered today.

It's so strange to feel totally normal right now knowing I have a potentially life-threatening illness and one that could easily recur after going through all this. I'm trying to stay positive about all this. I really want to keep my tongue intact which is why the surgery seems so unappealing.

I have smoked in the past, but never heavy. I have had my share to drink, yet the doctors say at my age neither were probably a big factor in this. My biggest mistake was not doing anything about this tumor for close to a year (during which time it increased in size by only about 25-50%)...

Anyway, would like hear what people have to say. Any people around my age here with similar problems? Either way, I'd like to hear from people. Has anyone has the tongue surgery, and if so, what was it like in the short-term and in the longer term?

Thanks,
Dave

Welcome, Dave. I am older and my situation was entirely different, but know that I had node involvement and a large tumor stage IV, and 3-1/2 years later am still here and healthy. All I can tell you is to pay no attention to survival statistics because they are not worth the time it takes to read them, and they can really upset you if you believe. Just one comment. I had 37 IMRT sessions and because it was IMRT, did not need the amifostine. I have about 95% of my original saliva volume, and didn't have to have those injections, which are NOT a walk in the park. You might check that out. There are many people here with tongue tumors, so I am sure you will have answers to all your questions as you go along. Be sure to check the main section of this site which has much useful, and more importantly, factual, information. I am glad you found us, because it is always easier to have people to turn to who have been there and come out the other side in one piece.

Hi, Dave. Altho I'm on the caregiver side of this disease, and way older than you, I can tell you that you will get tons of help, good information and sincere support here. So stay with us. My husband felt so good that he ignored his little "canker sore" for 8 plus months before bringing it to our family Doc's attention. His tumor was in the floor of his mouth and under the front part of his tongue with no lymph node involvement.He had surgery, including lymph node removal and 30 rad txs which ended July 8th. No chemo. Treatment will not a picnic, but it is doable. Let everyone here know whats going on with you. Amy

Hi Dave --

My husband Barry has SCC right tonsil (removed 6/21 with negative margins except for 1.2 cm tumor remaining at base of tongue) also 2 lymph nodes with SCC (assumed, that is, only one was needle-biopsied but the other is also enlarged). We went to Hopkins and Sloan-Kettering for consults and both CCCs said that they would NOT do surgery first on Barry because of the quality of life issues associated with the tongue surgery. The Hopkins surgeon said he would have significant swallowing and speaking problems post-surgery. Both consults agreed that for him, the best approach would be concurrent chemotherapy and radiation, that would almost certainly take care of the remained b.o.t. tumor and then, perhaps, selective neck surgery if cancer appeared to remain in the nodes. However both Hopkins medical and radiation oncologists said, since he did not have "bulky disease" -- their words -- he probaby would not need surgery. We got the very distinct impression that surgery first was not considered for tongue tumors at these top cancer centers and in fact, both outright said they would not do it on Barry. And his tongue tumor is much smaller than yours.

Both medical and rad oncs gave same statistics for 5-year-survival for non-smokers as 60-70% post-chem and radiation which is pretty damed good compared to some of the numbers you see.

Anyway, you will see me always stress the importance of getting a second opinon on any cancer diagnosis -- in fact, some insurance companies including mine require it. It is not a slight on your first doctor, and he/she should expect you to do it. After all, it is YOUR life!

Gail

Hello Dave
My husband though much older than you had stage IV base of tongue and a 9cm tumor , a whopper.
We decided not to go the surgery route for just the reasons you are questioning. We were assured that surgery was the second line of defense if needed. As you can see by my tag, it was the right way to go for us.
Absolutely get a second opinion, we did, and it made us fell much better about the decision we made.
You have already found a wealth of info, we are here when you need us.
Take Care
Marica

Dave,

Welcome to this site. I'm sorry you need to be here, especially at your age, but I know you'll get a lot of support and help here.

You didn't mention where on your tongue the tumor is -- that can be one factor in determining the best course of treatment. There are many people on this site who have dealt with various forms of tongue cancer (some of whom have flaps and can comment on the quality of life aspect post-treatment).

This is a disease that you want to attack all-out on the first time around (with a solid, multi-disciplined cancer team) to try to minimize the chances of a recurrence. I know I heard plenty of dire-sounding caveats about quality of life before I had surgery and radiation, and I was envisioning the worst. I'm one of those who had surgery first, then radiation, and I ended up losing a little less than 20% of my tongue (no flap) and many lymph nodes on the left side of my neck. While the treatment phase itself was tough, especially radiation, I've had very little long-term effect on appearance, speech, eating, or range of motion in my neck and arms. Most of the people who have met me in the years since my treatment have never suspected that I had cancer, unless they were told about it.

Feel free to come back here often with your questions -- and be sure that your medical team can answer the questions you raise with them about your upcoming treatment.

Cathy

Hi Dave. Though my cancer is in a different place and stage then most here you will find these are the bravest, most compassionate people, you will ever meet on a message board. Soon they will be like family to you as they are to me and no matter what you are going through or how you feel they will be here for you. Me too!
I will add you to my prayer list.
May God give you comfort and strength,
Barb~

Hi everyone. Dave here again. Thanks for the words of encouragement. To answer some questions I saw above, my tumor is on the right side of my tongue on the posterior, but completely visible if I stick my tongue out far enough. So it hasn't really slid back into the throaty area of the tongue at this point.

Also the first surgeon I saw did say no to surgery, so it was the 2nd opinion that actually said surgery was a possibility, a UCSF surgeon to be exact. With the size of my tumor I believe I would lose about 25-35% of my visible tongue, replaced with a flap. To me that seems like a lot to sacrifice.

I'm scheduled to start chemo on Monday and radiation Tuesday unless I opt for the surgery instead. This is probably the hardest decision I'll ever make. At the same time, I don't want to delay action any longer because of the obvious risks involved in putting things off.

I'd be interested to know more specifics about peoples experiences with the surgery and how exactly they've been effected. Maybe some can direct me to a thread where that was already discussed.

Also, though Erbitux is a newer drug some of the clinical trials I've read seem to suggest that it definitely adds to the effectiveness of the overall treatment in head & neck cancer. While I know it can be risky going with newer drugs, it seems like a good idea and my oncologist seems to think so as well, though it wouldn't be hard to find an oncologist who disagreed with that synopsis.

Thanks again for all the info and words of encouragement!

I would wait about a mojnth or 2 after rad tx's and chemo to make the decision on the surgury. That is alot of tounge to loose and plus the rad tx if not kill the cancer completely it could shrink it down considerably to where if you do need surgury your lose would be less on your tounge.

that's my logic, not sure the doctors agree. not sure why though.