Hello everyone!

My name is Gino, I'm 34 years old, and I was diagnosed with squamous cell carcinoma to the tongue--stage one, or "T1". Being a T1, I was told that the tumor was very small and removable.

The physician who is seeing me, Dr. Francisco Civantos, from the Sylvester Cancer Center at the University of Miami, has pioneered a new technique whereby nuclear dye is injected into the site of the tumor to determine which are the patient's centinel lymph nodes. Apparently, this varies from person to person. After determining which of my lymph nodes would be at greatest risk through this procedure, they were surgically removed. I had both a partial glossectomy in which the small tumor in my tongue was removed, as well as a partial neck dissection to remove the most risky lymph nodes.

The surgery went well. After a week, the pathology report came back clean. That is, no cancer was found in my lymph nodes. Needless to say, I was elated, as I thought my whole nightmarish ordeal was over.

Unfortunately, just as I thought I had dodged the bullet, this morning I was told that my case was discussed at a conference by a group of doctors (I should also mention that I am part of a study), and a more thorough pathology report revealed that microscopic cancerous cells--a little "speck", to use my doctor's words--was discovered in one of my centinel nodes. As you can imagine, I'm pretty devastated.

After telling me all this, my doctor recommended radiation. He told me that up to 3 years ago, he would have told me to forget about the whole ordeal and just resume my normal life. However, he has seen cases like mine in recent years that did not end up very well. Thus, while he mentioned that he would support me if I decide not to get radiation, he does recommend it, as this appears to have been a pretty aggressive cancer. Of course, he also emphasized that radiation entails a myriad of very nasty side effects, and that it also increases the chances of getting cancer a few years down the road. This really scares me, as I'm relatively young. At the same time, he mentioned that if I decide not to do anything, I have about a 40 percent chance of recurrence.

What do you guys think I should do? Go ahead with the radiation? If so, what can I expect? Are the effects as bad as in some of the accounts I've read?

Any advise/input will be greatly appreciated.

Gino

First off when the cancer is also in a lymph node as well it usually indicates a more advanced staging than originally thought. Tongue cancer, by its very nature, is more difficult to treat and very aggressive. If it were me I would hit it with all they've got in the arsenal.

Three years ago you probably would have ended up with a recurrence that would kill you. So now you have to choose nasty side effects or early death - is it really a choice?

Side effects vary all over the map. Most people here speak of the worst case. Some have driven themselves to therapy every day and continued working. The type of radiation is crucial - IF you are a candidate for IMRT, it will vastly improve your QOL issues afterwards.

Gino, A 40% chance of recurrence isn't the best odds, is it? I know it can seem hard to take this on when you were first told you have an early stage cancer that can be treated just by surgery, I went through the same thing myself, but that "little speck" really does make a difference in your staging and the later-on risks of cancer from radiation are quite low compared to that 40% chance. There are lots of people here who have had IMRT radiation and have recovred from it quite well and without many QOL issues (I am not the best example of this, but I also had chemo). My personal opinion is hit it with the big guns.

Nelie

Gino, my vote is for the radiation treatments. Good Luck to you....let us know your decision and how you are doing. Carol

Gino,

I also felt devastated when I felt I had recovered reasonable well from surgery, had what seemed to be a fairly clear pathology report, and then heard from my tumor board that they thought I needed to go ahead with radiation. After lots of questioning, I decided they had evidently thought it through and had valid reasons for their concern (I was 39 at the time and the cancer appeared to have some aggressive traits). Radiation was tough to endure, as you will read over and over on this site, but thankfully I've managed to go almost 17 years since then with no recurrence. I didn't have the benefit of some of the more recent radiation techniques, but my quality of life is still great, and I have no regrets about having had an aggressive treatment approach.

If you go ahead with radiation, you'll find plenty of support and advice here to help you get through it.

Cathy

Recurrences are difficult to deal with. I mean difficult in the sense that they are aggressive and rapidly move out of localized regions and become completely uncontrollable. Plenty of postings on this board attest to that. Bite the bullet now and do the radiation. This disease is very unforgiving of half measures. Saying

Gino,

I agree with Brian about doing the radiation now. I was in a somewhat similar situatuion as you. My doctor told me my path report was negative after surgery and I needed no additional treatment. (They did not remove any nodes). The second opinion I sought in Boston produced a report that I had a positive margin in the surgical tumor bed and needed radiation. Which I then received.

Every one on this board who has received radiation will tell you that it is no walk in the park but it is tolerable, survivable and hopefully life-saving.

I would encourage you to ask your doctor about combining chemotherapy and radiation. There are new studies that seem to indicate better outcomes if the radiation is combined with chemotherapy or one of the new drugs like Erbitux. See this story in the news section of the site:
http://www.oralcancerfoundation.org/news/story.asp?newsId=1040

You may want to do a search to find similar articles.

Good luck with this difficult decision. - Sheldon

Hello again everyone,

Wow...thanks so much for the quick responses! Please know that each one of you has opened my eyes and eased my anxiety. The likely side effects I'll experience from radiation treatment are not necessarily my primary concern. Rather, what torments me the most is the possibility that I might be cancer free. Afterall, it is possible that whatever microscopic "specks" of cancer I had were eradicated when my sentinel lymph nodes were removed. Hence, I might be going through radiation therapy for no reason (hence my anxiety). Of course, not doing anything and knowing the pretty substantial likelihood of a recurrence as a result would likely give me even more anguish.

In any case, after reading your replies, it now seems like a no brainer--radiation it is! I know in my heart that you guys are correct and I should hit this thing with everything available. Hit it with the "big guns", as Nelie said. Brian's statement that "this disease is unforgiving of half measures" and Gary's remark about tongue cancer being particularly aggressive really put things into perspective for me. Sheldon, I will certainly ask my doctor about the radition-chemotherapy combination. Cathy, the fact that you've been cancer free for 17 years gives me a lot of hope--thank you.

Bless all of you and thanks so much for this wonderful web site. It's literally a life saver.

all the best,
Gino

Gino - Allow me to add my support to all the advice given above. IMRT radiation is very controlled stuff and truly limits the side effects. Ask about it. Request it.

Cancer is very unforgiving indeed. Living the rest of your life with a bit of a stiff neck is the better choice. Hit it with everything now. Your body can actually take quite a bit of radiation before it gets to "too much". Use it. Fight hard. Be strong. Tom

Thanks so much, Tom. This past month has been incredibly tough for me and especially my family. However, I'm doing my best to be strong, and will definitely fight hard!

best,
Gino