Hello everyone,

A couple of weeks ago, I introduced myself to the group. My name is Gino, I'm 34 years old and was diagnosed with a stage 1 SCC to the tongue late December. I am being treated at Sylvester, a CCC in Miami, FL. On January 10, I had a partial glossectomy and a modified radical neck dissection.

The original pathology report came back clean. A second pathology report revealed a microscopic speck of cancerous cells in one of my lymph nodes. My doctor recommended radiation. A couple of you have mentioned that I should not only get radiation, but chemotherapy as well. This is because the chemo presumably enhances the effectiveness of the radiation.

I saw the radiation oncologist on Monday. He specializes in head and neck cancers and assured me that, in my case, chemo was unecessary. He recommended 6 weeks of radiation (IMRT) treatment, which he says will be tolerable. He also mentioned that if there are any microscopic cancerous cells left in me (and there's a very good possibility that there are not), they will be on the right side of my neck (where I had the dissection). I should also mention that I was injected with a nuclear dye prior to surgery to see where my sentinel lymph nodes "drained." Based on all of this, he was confident he knew where any microscopic cancer cells, if any, would be located at this point.

Is this doctor's recommendation (of forgoing chemo in cases like mine) consistent with what you guys know? Of course, I do plan to see a chemo specialist as well--but I once again want your opinions on this matter.

regards,
Gino

Hello Gino, I believe that this could be debated beyond my comments but here goes: stage one usually would not involve radiation. stage four would always involve radiation and most likely chemo. Stages in between are on a sliding scale. Remember that chemo drugs are toxic and have their own sets of longterm side effects. What i think your doctor is saying is that radiation alone is enough insurance relative to the risk he/she sees as typical for your case. It is not always science but a kind of art. If your doc has considerable experience and you are at a CCC then I'd say trust what they are saying. Perhaps a second opinion is in order so that you can be comfortable with your decision.

Hello,
I can't really give you any advice because I haven't been through enough to know how to answer your question. I was wondering though if you could tell me where the cancer was located on your tongue & did you find it or did a dentist? I noticed that yours was an early stage so that is why I am asking.
Also do you live near the CCC you are going to or did you decide to travel to go to one? I have read on here that it is important to be treated at a CCC but I have not been & wonder if it would of made a difference the first time if I had of.
I hope you get some answers that you are looking for...sorry for the questions instead.
I wish you the best in whatever treatment you end up with.

I went through with just radiation and a unilateral modified neck dissection, even though the chemo doc wanted, after the radiation and surgery, (6 years ago it wasn't done concurrently) to give me a chemo wash to be sure any micro mets were dealt with. I was so beat up after 72cgy of radiation (not IMRT) that I opted out. I just couldn't do it, and I was so sick from the radiation I just wanted to quit. Turns out 6+ years later I was lucky, and I am still on this side of the grass and in pretty good health.

Having said that, we have members here on the board who have posted about not doing the chemo, and they are now fighting for their lives. This is a tough call. I have an opinion, but I do not want to sway you one way or another. This is a very important personal decision that you and your docs or additional doctors need to make together.

The docs may be very correct in their assumptions. Just remember these are very informed OPINIONS, and not any guarantee that they are right. Whatever decision you make, base it on the opinions of the best doctors you can talk to. Once you make your decision, don't look back and second guess yourself. You could have your records sent to another institution and pay for an evaluation without having to travel extensively to get these extra ideas and opinions. Whatever you decide, you know we'll all be here to support you.

Hello again,

First of all, I want to thank all of you for responding so quickly.

Brian, I'm very happy to learn you've been healthy for over six years. Among those who, as you mentioned, avoided the chemo and are now fighting for their lives, do you happen to know what stage their cancer was in? I assume that would make a big difference. Yes, I understand there are no definitive answers in this game. However, you seem to have sound judgement in these matters and I would appreciate your opinion. People here seem to respect you a great deal, and I know that must mean something. If you feel more comfortable (and have the time), feel free to e-mail your opinion to me.

Elizabeth, the tumor was located on the lower right side of my tongue. Its discovery involved a series of twists and turns. Sometime in March of last year I went for a regular check up. My primary doctor saw a small white spot (which was hardly visible) under my tongue and referred me to an ENT. The ENT confirmed its presence (he called it "leukoplakia"--which is a precancerous lesion) and scheduled me for surgery. Two days later, I went to my dentist for a regular cleaning, I told him about what they had found, he checked the spot, and saw absolutely nothing. I then went to an oral surgeon who didn't see it either. Two days later, I saw another ENT and he also did not see anything. After seeing three professionals in a row who assured me that there was nothing in my tongue, I forgot about the whole ordeal. Of course, despite all this, the first two doctors had already planted the seed of suspicion in my consciousness. In fact, if I live through this thing, I should probably thank them--especially the first doctor.

In any case, by October, I started feeling a mild pain in my tongue--especially when I yawned. At this point I began to examine my tongue very closely and eventually noticed a very small white lesion. At first I thought it was just some sort of innocuous sore, but the darn thing would not go away. A bit later, I scheduled to see an ENT (the same guy who hadn't seen anything a couple of months before), and this time he DID notice a suspicious looking lesion. He did a biopsy a couple of days later and it came back positive for SCC.

Elizabeth, to answer you other question, I am blessed to live 15 minutes from the only CCC in Miami.

Please keep the replies coming--I need all the input I can get.

Gino

Gino - Trusting the opinions of skilled docs is essential - for confidence and peace of mind. Get that second opinion. Get your doc to discuss chemo with you - pros and cons. Yes, your staging has a LOT to do with how to treat it, but good docs are cautious. They don't want you too carved up or cooked or poisoned.... Get your medicos to convince you that their tx plan will do the job in a MAJOR way. Always hit cancer as hard as your body will allow you. Preserving your faculties by avoiding "un-needed" treatments is good. Having to fight the beast a second time is bad. There is no magic answer. Look those docs in the eye and be convinced. Your body will know the right choice. Trust that. We are with you. Be strong. Tom

Gino, I'd strongly recommend getting a second opinion from another CCC. I also had an early stage cancer (I had no signs of cancer in my nodes at all) and, as you can see from my "signature", I ended up getting the whole treatment--including chemo. But the first opinion I got (which was from a CCC) was ambivalent about whether I even needed radiation! I went to another CCC, one of the top 5 in the country, and got a much more aggressive recommendation and an explanation I could understand about WHY they recommended that.

So even opinions at CCCs will differ. I picked the second-opinion CCC because I knew they'd be pretty aggressive and I figured if they said I didn't need a treatment or that it was optional, I was really OK not doing it. Unfortunately they didn't say that.

Chemo makes the whole radiation treatment harder, more so for some people than for others (there are people here who sailed through their chemo with no serious effects from it) but it also makes it more effective. How much more effective is debatable for those of us who are Stage I or II, there's not clear data on it, but actually if you had cancer in one of your lymph nodes (microscopic or not), I'm not sure that you technically are stage I or II anymore.

Get a seond opinion at another CCC and if they agree you don't need chemo, you're pretty safe not doing it I'd say.

Nelie

Hi Gino,
I, like Brian, did not receive chemo and my cancer was a stage IV. I had a microscopic trace of cancer in one lymphnode that was first in the chain of lymphnodes and they didn't feel chemo was warranted. April will mark three years from my surgery and so far so good. You have a tough decision to make. At times I'm happy I didn't have the chemo, as it makes it harder. Other times I worry that I should have had it, but those times are far fewer now.
Good luck,
Minnie

You have to trust your Doctors, they have been through many hours of extensive training. If they are telling you no chemo, count your blessings. In the end, niether you nor your physicians can insure that cancer will not rear it's ugly head again, That is in God's hands.
Darrell

Darrell, I want to be respectful of your often-stated religious inclinations here, so I am going to tread lightly, particularly knowing that you are going through tough times yourself, and your faith brings you great comfort and strength. But not everyone who is fighting this disease or any other malady thinks it, or the final results of it, are in God's hands, and not everyone thinks there even is a God. Even those that do, may not interpret him as you do, as all controlling. Having said that, remember that (If there is a God) he gave man free will. This is how he cops out of all the wars in which millions die, genocides, and other maladies that plague mankind.... essentially we do it to ourselves, and to those around us if we are the bad guys, through the free will that he gave us. After all he is supposedly a benevolent God.

The idea of free will therefore also incorporates a bit of decision-making, and choice on our part, hopefully from an informed perspective. Think for simplicity sake here just about making decisions about lifestyle and medical decisions. The choices that free will allow, could be wrong, as in