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.

Hi Dave,

Welcome! but sorry you have a need to be here. I figured I'd throw my 2 cents into the mix here. I wish I wasn't so medically "challenged" and was more knowledgeable when it comes to reading my report from surgery but what I do read and understand is pretty scary. I was diagnosed as stage IV, base of tongue. I had the surgery first - a total glossectomy - right and left neck dissection (5 positive nodes on right side), a feeding tube and trach for 8 1/2 months. Surgery was followed by chemo (cisplatin) and 37 rad treatments (not IMRT). I also had the daily shots of amifostine. The good news is I am 18 months post tx and doing a hell of a lot better than my doctors thought would be possible. With the help of a mouth prosthesis I talk amazingly well but being understood on the phone takes more patience on my part and the part of the listener. I am also able to eat pretty normally (with the help of a lot of water) except for dry foods such as chips, cookies, cake, bread, etc. I work full-time and have taken up an exercise class and 2 mile walks. I guess what I'm trying to say is that although my life is FAR from perfect or even normal, I do have a life. Your decision is a tough one but it looks like you've seen knowledgeable doctors. In my case I don't feel that I made the wrong decision. Unfortunately, even though many of our situations are similar, no 2 are alike. Your journey, whichever you choose, is a rough one but know that there are many here who have walked before you. Please keep us informed as you push ahead. Oh ... and I'm sorry I've rambled on so much!!!

Hugs, Nancy

Dave,

For what it's woth, my 28 year old non-smoking, non-drinking daughter had a base of tongue tumor. She had extensive surgery, followed by radiation. She only lost a small portion of her tongue since the tumor was on the base, not on the mobile tongue. Because of that, she had minimal disfiguration and only a slight lisp from the surgery. Unfortunately, the treatment failed and she had a recurrence and died several months later.

Although the surgeon got clean margins and her tumor was well-differentiated with no extra-capsular spread and no peri-neural involvement, she did have 4 positive nodes. Evidently, it had already started to spread and in that case, surgery was not the best option. If any of your "lit up" areas actually contain cancer cells, then surgery may not be your best option either.

Every case is different and there is no way to know if she would have responded better to radiation and chemo instead of surgery and RAD. There however have been many people here on the forum who have had success with RAD and chemo. There have also been a handful of young people here with tongue cancer who had surgery and RAD who did not survive. Again, every person is different, but based on this info and my personal gut feeling, if I were to be diagnosed with SCC, I would choose RAD and chemo before surgery.

Rosie

Dave,

I am a non-smoking, social drinker, dental hygienist. Two years ago, at the age of 41, I was diagnosed with stage 1, poorly differentiated SCC of the tongue. I had two separate lesions, both on the right ventral surface (underside) of my tongue. My treatment consisted of a partial glossectomy (about 25% of my tongue was removed and I did not have a flap) and a modified neck disection. 48 lymph nodes were examined, all were cancer free, clean margins on my tongue, so I did not need radiation therapy. I saw four head and neck surgeons for opinions before my treatment, three at CCCs, and all three recommended surgery as the first line of treatment, however, my tumors were small and stage I. But all of them told me that they could remove up to 50% of my mobile tongue and my speech and swallowing would not be affected in the long term.

Immedialtely following my surgery, I couldn't eat solid food for about three to four weeks and then gradually within the next month I was eating normally. My lower lip was paralyzed for almost six months from the neck disection surgery, but it did recover and my smile is back to normal. My speech was pretty slurred for the first three months, but by about 8 months after surgery, everyone suddenly was saying that my speech was 100% back to normal.

Two years later, unless I tell someone and point out the scar on my neck, no one would ever know that I had had tongue cancer.

Good luck with your decisions.

Barb

Dave, I thought I'd throw in my 2 cents too. If you look at my "signature" here, you'll see I had all of the above; surgery, radiation and chemo. However, I had Stage II cancer and had the surgery first because it was possible at that point that that would be the end point of my treatment. I had approx. 30% of my tonguie removed--it was on the left ventral side--fully visible--not base of tongue. I didn't have any kind of flap. From then until when I started rad and chemo was about 2 months and in that time I was talking almost completely normally again (I had an occassional lisp but I later lost it) and had moved from eating just smoothies and shakes to eating almost everything (I could handle dry food such as breads with water in my mouth or olive oil or dressing on the bread--probably I could even have done chips with dip though I didn't really try.

They took out 28 nodes during the neck dissection part of the surgery and there was no cancer in any of them. However, it turned out I did have some aspects of the tongue tumor that apprently put me at more risk of recurrence so I opted for an aggressive treatment of radiation with chemo on top of the surgery to be really sure all the cancer cells were gone. If you read my posts elsewhere, you will see that since that ended I have been unable to eat anything at all due to mouth pain and drymouth from that treatment. I assume eventually that too will end (I certianly hope) but truthfully it seems to be much more of a hurdle to heal from that than from the surgery.

Also, an argument for getting surgery prior to rad (or rad and chemo) is that your tissue heals much better and faster before radiation than after. Good luck with the decision you make. This board has been a real sanity saver to me since I am not being treated at a major CCC (although my rad oncologist is from one--long story) and I have ahd to be very proactive about getting what I need. Also, people here always know what you are going through when the going gets tough and man is it nice to know there's a group of people somewhere who have "been there and done that" as they say.

Nelie

Hi Dave,

I read your post and thought I would tell you what they did for my sister Marcy. She was diagnosed with I believe a stage 2 SCC of her lateral tongue, she was 31. They did a partial glossectomy and neck dissection. She was very scared about losing part of her tongue but she could speak very good after she healed. She did have 1 postitive lymph node. They chose to do nothing else for Marcy afer her surgery because she had only one positive lymph node. NOW I can't even begin to imagine why her doctors wouldn't have recommended aggressive treatment.
Marcy had a CT scan 3 1/2 months later that showed her cancer had spread extensively throughout her neck. THEN she had chemo and radiation and also a radical neck dissection.
Nothing could stop her cancer at this point. I suggest you treat the cancer as aggressive as possible. I believe Marcy should have received rad and chemo immediatly not wait those three months. Marcy felt something wasn't right from the beginning but her doctors didn't always listen....
Anyway, that is some of Marcy's story.
I wish you the very, very best as you make your decision.
Bless you,
Michelle

Dave,
My mom ended up having surgery twice and it was awful for us to see our usually very healthy 54 year old mother with a trach and a feeding tube in her nose (which she despised). She had a lot of trouble speaking at first but only had one speech therapy session and she speaks pretty well now considering she lost about 75% of her tongue. Her surgeon took what was the front of her tongue and made it the side of her tongue so she had to completley learn how to eat and everything all over. She had no flap and she can practically eat and drink anything now quite normally but she cannot stick her tongue out so I can imagine that a passionate kiss is not very possible anymore. That might sound funny but for somebody your age probably pretty important. I think if given the option now she probably would have avoided the surgery because it really made things difficult once they added the chemo and radiation in the mix.

My prayers are with you. Please feel free to ask anything you like.

Dani

Dave,

You asked persons who had tongue surgery what was it like short term and long term. Depends on how much of tongue they take.
I'm lots older (69) so I can't imagine having this at an early age. Just ain't fair!
First tumor was on side of tongue and I waited 4 mos. to have removed in Nov 03. Took about 30% of tongue but I could eat and speak just fine. Nodes had no cancer so I was released a month later with no rad. seven weeks after 1st op, I noticed growth at base of tongue. Since it was holiday season, didn't get diagnosed until mid-Jan 04. Op was Feb 4, 2004. Cancer had grown aggressively to where they took almost 85-90% of tongue with forearm flap, a pharyngectomy, and had to break jaw to get at cancer. Had 36 rad until May 04. Trach in until mid-March 04 when it fell out on its own. Still have PEG tube which has been a life saver. If I had to do it over again, I would have insisted on rad right after 1st op in Nov 03, but its too damn late.

Its no question that extensive tongue surgery is a quality of life destroyer. Speech isn't worth a damn even though I had therapy and I'm getting to swallow liquids now through a syringe because I don't have a tongue.

I would hang on to that tongue as long as I could. I also add this is a great site. I never would have learned about a palatal prosthesis which I am looking into thanks to a brave member, nancyt. This is one brave lady who had a total glossectomy (mine was subtotal)who was off the PEG tube 8 and 1/2 months after treatment. She is the inspiration that keeps me hoping. Right up there with Lance Armstrong.

You are a true inspiration, Nancy. God Bless!

Dave, keep asking questions and push for options and answers. Take it from an old guy who found out the hard way.

All the best,

Jim Haucke
________________________________________________
T4N0M0 (Stage 4) SCC base/anterior of tongue, pharynx

Thanks so much for all the advice everyone. I am committed now to keeping my tongue intact therefore I'm going with the chemoradiation and hoping for the best. It's tough to make these decisions and never thought I'd be making them at my age. But I've chosen the path and am hoping for the best. Today I did the first day of radiation and yesterday I had my first day of chemo. So far so good. I'll keep you posted on my progress and will continue to read with great interest how you are doing with yours.

Best,
Dave

Hi Dave,

I too had SCC of the tongue. It had also moved to two lymph nodes. I wanted surgery ASAP but my ENT said no because of your valid concerns. They cannot say for sure how deep the tumor is. I had a PEG tube inserted, (you will need this), and had the chemo and radiation. 35 RAD treatments and two rounds with 5FU plus two or three other chemos over a six week period. I am now cancer free. It is a tough go, but I needed no tongue reconstruction. I strngly sugest the chemo/RAD route first and some disection after to get the lab pathology results. There is also risk of spreading the cance rduring surgery from what I have heard.

Good luck,

Steve