My sister (40 years old, non-smoker, non-drinker) was diagnosed with a squamous cell carcinoma on her tongue in September. She thought she just had a canker sore but it kept getting bigger so she had it checked and so started the whirlwind. She had surgery to remove the tumor and lymph nodes and got good pathology results--clean margins, clean lymph nodes. The path report stated that the tumor was only .6cm. Her radiation oncologist *really* wants her to have radiation. She is resisting, but may ultimately follow his recommendation (or possibly get a second opinion). This guy seems a little flaky to me and I'm not sure I trust him--he has twice told her she doesn't need rad, then called her on her cell last week to tell her he is "losing sleep over her case". She has never been told what stage she is, but I assume that this is stage I. Her surgeon said he would not recommend rad. Any similar experiences or stories anyone can share?

When in doubt, go for the second opinion -- at a comprehensive cancer center.

I'd guess that further treatment would depend in part on how invasive the tumor was. In my husband's case, an oral surgeon's initial biopsy of a tiny leukoplakia on his tongue showed moderate dysplasia but warned of a possible "skip effect" and strongly urged further investigation. Since cancer had not yet been diagnosed, he didn't even consider going to a CCC for the excisional biopsy, which got it all and was done by a local ENT.

When that came back with a diagnosis of SCC in situ and a bit superficially invasive (somewhere between stages 0 and 1, we figure), he sent all his records to Johns Hopkins CCC and is now being followed there -- no further treatment recommended at this point.

All the best,

Leslie

Why do you assume that it is a stage one? Is there something that we are not hearing that leads you there? 30% of ALL stage 1 patients have an occult met to the lymph nodes and that is the reason that radiation is sometimes called in. You can search the forums for this idea, we've discussed it here a bunch, and lots of people have weighed in from both sides of the argument. If it were the days before IMRT, I might want to sidestep the radiation and take the chance that I was in the lucky 70%. Today I think I would go for it. Personal opinion, from a non doctor.

Clearly we have had people post here that only had the surgery and are still doing well. I would want to have some sense if she came to this through tobacco, as that might lead me to feel stronger about having radiation, as the issue of field carcinogenisis comes into play. But the 30% issue is a cold, peer reviewed, published fact. And those in that percentage don't know they are there for at least 18 months in most cases, until that micro met that is not visible on a scan today, rears its ugly head as what the doctors will call (wrongly) a recurrence.

You need more opinions. Listen to Brian.

Thank you very much for all of your input. I guess I assumed hers was Stage I because of the size of the tumor removed, no evidence of metastasis, no lymph node involvement. I'm going to suggest she talk to more experts and maybe we'll hear the same recommendations, maybe not. We are close to Boston, so good hospitals are not far away.

Your sister's situation is almost identical to mine. I am one of those that chose no radiation. This was agreed upon by my surgeon and a radiation oncologist at Fox Chase Cancer Center in Phila.. Skipping radiation is a very big decision and one that shouldn't be taken lightly. A second opinion at a CCC is very important.

I would try to find a doc that has conviction in his decision. Your sister's, seems to be unsure of himself. This cetainly does not instil confidence.

Jerry

If you live close to Boston, I'd strongly recommend getting a second opinion at Dana Farber, the comprehensive cancer center there. They have an online form to request this. See
http://www.dana-farber.org/pat/becoming/second/

It would be very helpful to know why your sister's ENT told her twice she didn't need radiation and then changed his/her mind.

Should your sister decide to have radiation, you should move relatively quickly to get things in place. It often takes several weeks for the preparatory stages to be completed and a mask prepared (if she'll need that). My radiation oncologist (at Mass General) told me that it is optimal for radiation to start no later than six weeks after surgery. - Sheldon

I would definitely get a second opinion at Dana Farber. Brian's right that there's a 30% chance of mets to her lymph nodes that won't show up on imaging tests. At the very least they may recommend neck dissection surgery to test the nodes directly before coming to a conclusion about whether you need radaition or not.

Nelie

I definitely agree with the recommendations to get to a CCC (such as Dana Farber, since you're close to Boston). Since your sister has gotten some conflicting advice, it really would make sense for her to be seen by an experienced head and neck cancer team who can come to a consensus about what's the best approach in her case.

I was 39 and a non-smoker/social drinker when I was diagnosed. Much of my treatment plan was developed at Dana Farber (along with a couple of doctors from affiliated hospitals) and they never put me in a position of having to sort out conflicting recommendations. The team obviously discussed the pros and cons of each aspect among themselves and then got back to me with their collective advice, along with good explanations of how they formed their opinions.

Cathy

From your original post, it sounds like your sister had a neck dissection to remove lymph nodes along with her tongue surgery? If so, seems like the diagnosis of no lymph node involvement comes from that pathology, not from imaging. Brian, does that 30% statistic still apply if this is the case?

Anita

The article is written based on individuals that have had a positive intraoral diagnosis, in which neck involvement appeared not to be present, using conventional scanning technologies. Subsequent surgeries or development of disease yielded the findings over the period that the population was watched. While you would assume that a neck dissection would remove all possible risk, there are possible other issues. In my own case, the nodes were bilaterally involved, even though my primary was just on the right. If I had been found as a stage three, and not a four, those two nodes on the left would have not been developed enough for a scan to pick them up in all likelihood. Second, and this is informed speculation on my part, there is no evidence that nodal involvement is the only place that neck mets go to. We know for sure that the disease can reside in a variety of tissues, muscle, bone, adipose, etc. and while I think it is well understood that nodes are the most likely location for it to go, I am far from certain that this is the ONLY place it goes. A neck dissection in which known mets are not being removed, but for surety sake is being done, only takes out node chains. Could it still exist in that location as a micro met? Your question is a good one and I will pose it to some doctors in next weeks phone conference with the advisory board.

Brian...you were going to pose this question to the Advisory board. I am curious to hear what their current thinking is on the subject of radiation/no radiation for stage I and II OC's. Thanks.

I am afraid I cannot give you anything that is back and white nor supported by concusive peer reviewed published data that will lead you to a personal decision. Uniqueness of each patient and their disease, (separate from staging) are involved in this decision making process, and no one that I talked with indicated that any absolute rule applies.

I'm pretty sure that the 30% of occult mets to lymph nodes applies to patients who have had CT scans and physical exams but NOT a neck dissection. That's what my ENT told me when I was diagnosed as stage II but hadn't had the surgery yet. After I'd had the neck dissection, he said my risk of occult mets was much lower and it was clearer I was a stage II, but, since he had only done one side for the neck dissection, there was still some risk it had spread to the other side and I needed radiation on both sides to be sure to eliminate that risk.

But Brian is right that the lymph system isn't the only way cancer spreads. It can spread along nerves and through the blood as well. That's why, even though I had no node involvement after a neck dissection, it was recommended to me that I have rad (and chemo although that was an aggressive recommendation)--because the tumor itself had perineural involvment and also vascular involvement which suggested I was at risk of spread through those alternate routes.

Nelie