My mother was diagnosed with Stage I squamous cell carcinoma in her mouth about 4 years ago. The tumor was small and was removed complete at one of the leading hospitals in this field here in New York. The doctor said that he hbelieved that she was cured forever (all pet/cat scans were good, they did the biopsy of the lymph nodes - negative; pathalogy report was good - no invasion). But then it happened again and again. Just 4 months ago the dentist saw a white spot in her mouth and decided to to a biopsy - positive; very small tumor in the early stages; great pathology report after surgery. And it was in a different place than the initial surgery.

Doctor said that radiation is not necessary since there was invasion. Plus, you can do it only once...

And even if we wanted to do the radiation treatment, isn't it focused on a particular place? In other words, what is the point of radiation when the tumor was small and was completely removed, and the cancer recurred in a different place in the mouth? I don't know what else we can do to fight this as she seems to get those "spots" every few months. She is a non-smoker/non-drinker. It all started with some leukoplakia/linchen planus in her mouth many years ago.

Any suggestions? Did you read about beta carotene chemo-prevention trials for leukoplakia? What does your doctor say, if you have a similar problem?

Very desperate for answers...

Hello,

I understand your frustration. I've just had my fourth surgery on Dec 7th since April of 2004. Mine, too, began as leukoplakia on the bottom right side of my tongue. It was 10 years later before a biopsy was positive for cancer. I, too, am a non-smoker and non-drinker. Mine, too, is squamous cell carcinoma. I did not have to have radiation after my first two surgeries. My third surgery was to remove a lump in my neck with it showing in one lymph node. That was summer of 2005, followed by the radiation to my mouth and neck. The radiation was focused on the right side of my mouth where the cancers have occurred, to my neck, and to a lesser degree around to the left side of my mouth. A PET scan in February 2006 was a good report. Yet I had another biopsy in November that was positive. My doctor tells me that my immune system is not fighting the cancer cells when they return. I have had active Epstein Barr virus off and on since 2003 which means a compromised immune system.

My case is always taken before the Tumor Board in the city where my doctor practices. The choice of chemo was discussed in 2005. The studies showed the type of chemo was much too harsh as it would have to be given at the same time as the radiation. The radiation may have to be stopped for a time because of the harshness of the chemo which would nullify any effects the radiation had done to that point. It was not advised, and my husband and I agreed. My doctor has told me that there isn't a chemo that is so effective for this type of cancer. My choices this time were to try Accutane. Studies have shown it to help work as a preventive measure; or I could just keep a close watch. After researching the Accutane and possible side effects I decided not to go that route. I had started using glyconutrients in the summer of 2005 to help boost my immune system. I had gone to a maintenance level after my radiation. I now think that I need to stay at an increased level. My doctor was quite receptive to my choice. By the way, my cancer this time was superficial, clean margins, and bone was not involved.

I know where you are coming from. I would encourage you to research glyconutrients on the internet. It is truly baffling to have it to keep returning and not be able to get a handle on keeping it under control. We are kindred spirits as we share our common experiences.

Cathy

Maybe it's just me, but I get really nervous when I hear the word "forever". I truly don't believe that there is any such thing, especially with this disease.

We all hope that we're cancer free forever, that the treatment we suffered through "cured" us, but that's hope, not always based in fact. I think your Mom is incredibly fortunate to have a Dentist who's on top of their game, and spotting the problems very early; many are not as lucky, and pay a heavy price as a result.

Is your Mom seeing an ENT? Doctors unfamiliar with oral cancers far outnumber those that are.

If she is simply going from recurrance to recurrance with no cohesive cancer care team and treatment plan to avoid or at least minimize the possibility of another round with the demon, she may want to reconsider that approach.

Radiation today is very precise & controllable. That doesn't necessarily mean that it only covers small areas; it can be used very effectively over larger areas. It is often used as a secondary treatment following surgery to ensure that any errant cancer cells, even on a microscopic level, are eliminated.

SCC is agressive, and it's sneaky. Recurrances are all too common, and just as deadly if not discovered and treated....agressively.

I haven't heard anything about the trials you mention. Doing a search on Quackwatch for beta carotene will not leave you with a warm fuzzy feeling.

For every proven, endorsed main stream treatment, there are dozens of alternative treatments, very few if any relieve anything but your pocketbook. Trust your ENT. If you dont have one, change that. Don't do or take ANYTHING without running it by them first.
Wayne

Cathy, The chemo information you got frustrates me. There is no question it makes the treatment much harder but it also makes the treatment much more effective. If it is supervised by people who know what they are doing, and any possible infections are controlled as soon as they occur, you will never have to have radiation stopped because of chemo, although you may not be able to do all the chemo treatments, which is what happened to me. There's data that shows that doing two of the three is almost equally effective however.

Your doctor is right that right now, there is no clearly effective treatment involving chemo alone. The chemo is mainly useful in making the radiation more effective. It seems to me given the good data about that, it should be recommended for radiation for early stage cancers where there is a high than usual risk of recurrence (which there obviously is in your case) more often. And I know there are some mdeical oncologists at top CCCs who think so too. Which is why I had it!

New Yorker, is the doctor telling your mother she does not need radiation with this recurrene at a CCC? if not, I would certianly recommend a second opinion.

Nelie

New Yorker, I forgot to add that I had my radiation (and chemo) without having any nodes involved, and already having had my tumor removed with clear margins (although the size of the tumor made me Stage II instead of Stage I). My understanding is what they radiate in these cases is the tissue around where the tumor was removed (margins can look clean but cancer cells can be missed), the base of tongue where cancer cells can travel as well as the pathway of lymph nodes down the neck where cancer might spread (in my case this was done on both sides since my tumor was near the midline of the tongue--on the ide where the tumor had been, I had had the nodes removed but it is always possible cancer cells are still in that pathway from the tumor).

I hope this helps.

Nelie

Scans are one way we have of detecting cancer. Even though it is reassuring to have a clean scan that does not mean you don't have cancer. If a Dr. even mentions radiation for "insurance" against microscopic cells I would recommend that path and get radiation like Nelie did.

NewYorker,

My diagnosis was very similar to Nelie's, but was many years earlier before chemo was routinely done along with radiation. Even though the pathology reports from my surgery showed clean margins and no lymph node involvement, my cancer team felt strongly that radiation was needed as an extra measure of caution. As Nelie described, the radiation covered a broader area than just the tumor site itself -- mine was around the tumor site, the jaw, base of tongue, and down the neck to the collarbone.

Cancer cells can exist at a microscopic level than cannot be detected by scans, which is one reason why radiation may need to be done where the cancer has shown aggressive tendencies (even though all visible signs of the tumor may be gone). If your mother isn't yet being seen by a comprehensive cancer center team, I would urge her to get to one ASAP.

Cathy

Cathy: The problem is that she had surgeries in different parts of her mouth. Even if radiation was done in the place of her 1st surgery, it would not cover the other spot that was on the other side. if one could radiate the whole mouth and kill all the cells, that would be great. But it's my understanding that this may not be possible.

How do you guys handle radiation? My mother is truly afraid of it and cries when she thinks that she will not be able to show here face in public. She is very concious of her appearance.

Also, out doctor said that stage 1 cancer in the mouth is not treated with chemotherapy (only surgery and/or radiation). Is that what you hear also?

NewYorker,

For oral cancer, if chemo is used, it's typically in conjunction with radiation (to enhance the radiation's effectiveness) - not by itself.

Regarding your mother's appearance concerns -- I would think that multiple surgeries would also be a cause for concern, particularly if those surgeries have to be more extensive to deal with recurrences. There's no doubt that radiation is often tough to handle for a period of months, but for me it had very little long-term effect on my appearance. Most people who have met me in the years since my treatment have no idea that I ever had surgery and radiation. BTW, I also had some of those "appearance" concerns, as I was diagnosed when I was 39, but I figured survival came first and foremost, and appearance would have to take a back seat.

I can't tell you whether your mother is a candidate for radiation at this point. I would just suggest that with her history she should be sure to get the input of an experienced head and neck cancer team who can help make that determination.

Cathy