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

What Cathy said..in spades. My surgery left me with an incision scar that begins under my left ear, runs down my neck almost to my collarbone, across to the midline of my throat, and all the way up to, and through, my lower lip.

It is 6 months old, and if I didn't point it out to you, you'd never notice it. Even if you did, I would say thats a small price to pay for being cancer free. The radiation's visible effects are short term; the surface burns disappear after a few weeks, and seldom scar.

Shes also correct that they seldom use chemo alone; its usually used to enhance the effectiveness of radiation.

It is not mandatory that chemo be used either. I didn't have it with my radiation.

Reading through this entire topic, I can't help but wonder if the information that you and your Mom are getting is as comprehensive as it could or should be.

Please don't misunderstand; I'm not being critical, but I just don't have a strong sense that all of the options are being fully explained to you. There are few absolutes in the treatment of cancer. It just isn't the kind of disease where you're diagnosed, you have treatment A,or B, or...? and it's gone, period.

There are folks here that had truly life threatening tumors, received minimal treatment and have been cancer free ever since. Others with much smaller and less invasive cancers have undergone extensive, agressive treatment, and continue to battle the demon.

I said it before and I'll repeat myself; make sure that your Moms medical team is appropriate and informed. Your family Doctor, as good as they may be, just won't cut it here. This disease is a killer, and you need to give it the respect it deserves.

There's a lot of very good reasons why there are Doctors who specialize in treating oral cancers. Find those people and get their opinions
Wayne

Dragan: I think the impression you're getting is due to the way I describe it. The doctor that we are seeing is a very experienced surgeon and othloringologist who is dedicated to treating head and neck cancers (that is what he does all day), and we are going to the cancer center that has a good reputation (don't want to mention the name, but it's a good one). We are not going to the family doctor for this and never have. Once the dentist took the biopsy that showed cancer, I arranged an appointment at the cancer center with a specialist, and we go only there ever since. In addition, she is see an experienced dentist (specializing in Oral surgery) who is also examining her.

Can women here share their experience with radiation? Did you lost the taste? Did you have problems with your teeth and crowns? Thanks.

One thing I don't quite understand. People refer to many options and treatments that we can choose from. But it looks like for the stage I cancer of the mouth, there are only 3 options: surgery, radiation or the combination of the 2. I researched this thoroughly - for stage I oral cancer where the lymph nodes are not involved, chemo is not normally used.

NY,

I don't know where you did your research but I had node involvement and had no surgery but had chemo rad as detailed below. I was Tx at Moffitt Cancer a CCC. Why are you hesitant to name the Tx facility?

Chemo enhances the rad's ability to kill the cancer cells. My CO said it added 20 to 30% and it was my choice. I went for it and believe me the chemo was not the Tx problem. Rad was so I picked up an extra 20-30% killing juice for little added discomfort.

Male, female, it doesn't matter, we all share the same side effects from rad. Yes she will loose her taste and develope dry mouth and many more nasty things will happen to her but it is short lived in the scheme of things and with your help she will emerge from the Dark Tunnel alive and well...we all did.

NY, either you are getting bad information (there is plenty of it on the web if that is were you are getting it) or you are misinterpreting it. Your comments about radiation and what it can and cannot do are incorrect. With IMRT radiation any imaginable pattern of exposure and various intensity levels within that pattern can be used. Infinite combinations of mapped patterns and number of grays of radiation can be applied - from pinpoint to wide spread, and those can vary infinitely within the pattern. That is the beauty of the process. It matters not that the two sites are not close to each other. Also there are many types of chemo. From that which is used to enhance radiation's effectiveness, to that which is used to kill the cells directly, to new targeted therapies, which may not be chemo in the conventional sense like Erbitux which is a monoclonal antibody, they all have different mechanisms of action, so your research related to this is incomplete, not conclusive. Lastly gender has no impact on treatments. As to the "possible" methods of keeping it at bay like glyconutirents or beta-carotene, you are at a stage where treatment is the issue not possible chemo preventative strategies that have not proven to have universal application. Since you are in NYC, I would want to see someone at Memorial Sloan Kettering for opinions. You are right next to one of the best in the world. Any doctor of good reputation would have no problem with opinions from other sources.

NY, I totally agree with what Brian has described about radiation. They can map out and pinpoint treatment for radiation to a T. It is not haphazard at all. My cancers have all been on the right side (tongue, gum area, and neck), but I also received a lesser amount of radiation to the left side of my mouth. So I received radiation to my entire mouth even though I had no involvement of cancer to the left side. My radiation oncologist was very careful in mapping out my treatment to avoid my losing too much of my salivary glands which does cause dry mouth and can make it easier to have problems with your teeth later, but I've lost 4 teeth- total-due to the cancer showing up on my gum area-2nd and 4th surgeries. I did lose my taste for a while. I think I was able to really begin tasting food more normally about 4 months after my treatment (finished mid Oct. 2005). My mouth and throat aren't as dry any more either. I do use a fluoride gel weekly now. It was more often at first. My doctor didn't recommend radiation until my third surgery when the lump was removed from my neck with one lymph node involved. But I already had a neck dissection in my first surgery to check lymph nodes, so that wasn't anything new to me. As far as the physical affects of the radiation, again, a good radiation oncologist will stay on top of this. My dr. was very careful about the effects. Yes, I did have to stop radiation for about a week because of burns to my neck area, but I know my doctors advised the radiation in my best interest. And I must say that after I completed my course, my neck healed very quickly. I realize the extent of radiation treatments and the after effects are different for each person. But, in my experience, that didn't prevent me from having another cancer occur on my gum and yet a fourth surgery. I have no regrets whatsoever in having had the radiation, though.

Some talk of having chemo with their radiation. My doctors and the tumor board did not advise this for me, one of them coming from MD Anderson in Texas. With the information we had before us, my husband and I were completely at peace with that advice. I realize, too, that your mother's cancer is stage I.

Let me please be clear in my mentioning glyconutrients that I'm not using them in place of anything that my doctor would advise in my best interest. I've come to realize that for me, my immune system definitely needs a boost and this is the nutritional supplement of choice for me. I have done extensive research and am most comfortable using this supplement. As it may not be the choice for some, it is a source of hope for my body fighting this cancer, and I am compelled to share it with others and to encourage research...never to just take my word for it.

I hope the testimony of my experience helps answer some of your questions.

Cathy

NewYorker,

Just wanted to add a followup to my previous post. When I came through surgery with great results and no obvious indication of any spread beyond the original tumor site, I thought I was home free with no need for radiation. For several days I fought hard against the tumor board that said I should have radiation (although I ultimately went along and had it). I did have many of the side effects that came with it, but one by one they have subsided. My taste buds returned, my salivary function has mostly come back (bit by bit), and with hindsight I have never regretted having radiation at that point. I've tried to be careful about good dental hygiene over the years, and I still have all my original teeth.

In case you didn't catch it from my signature, I went through this over 17 years ago. In the meantime, I've been able to travel all over the world, continue to work, take up hobbies I never thought I'd be able to do, and do lots of volunteer work. I give a lot of credit to some doctors who pushed me to hit this disease as hard as I could as soon as I could.

Cathy

Brian: Thanks for your reply. We do go to the Memorial Sloan Kettering cancer for our treatment. That's where my mother has been treated for all these years and had all her surgeries. It looks like (based on what doctor is telling us), that if there's no lymph node involvement and did not spread beyond the mouth, surgery and radiation or the combination of both are our only options for treatment - I asked him again and he confirmed. He sent us to the radiation oncology specialist at the center for her feedback and opinion. When she heard that my mother had 3 surgeries before (that was before the 4th), she was convinced that my mother needs to do a radiation of the area of her last surgery, whereas our main doctor (oral cancer surgeon/oncologist) felt that because you can do it only once and it's not clear where the radiation should be done, she should not do it - difference of opinion.

The 4th time it recurred in different area of the mouth where there was no indication at all that it can recur or appear (few inches from the place of initial surgeries). So, if we went ahead with the radiation as the radiation oncologist suggested, it would be done in a place where the cancer did not recur and we would lose radiation as a last resort for treatment.

We just visited out doctor again at SKC. He agreed with that assessment. He is saying that it's very difficult to pinpoint where my mother would need a radiation since you cannot radiate the whole mouth. He recommends a surgery again, and see how it goes and what the pathalogy report says before recommending radiation.

My mother's concern is that she already feels a lot of pain (both physical and emotional). The thought of another surgery in her mouth brings her to tears. And the idea that she will have additional burning pain in her mouth due to radiation, plus burn spots on her face, don't look like a good prospect. Even now when people are noticing some changes in her appearance, she feels really bad and depressed.

But most importantly, we are not sure what we should do after the surgery. The doctor is saying that maybe we should consider radiation because cancer recurred so many times, but he is not certain about this. He is saying: it's great that we always catch it at the superficial level, but it's unusual that it recurs time and again. His words were: "you can only do radiation once, and what if she gets something on her tongue or another side of the mouth in few years?" He is saying, let's make that decision after the surgery. It's a pickle...

I had my radiation before the proposed surgery. In those days there was no concurrent chemo. After treatments the surgery of inside my mouth was cancelled as the radiation had done all the work. I had a selective neck dissection to confirm that all the nodes were clean, and they were all disease free. It may be possible that radiation alone might be a solution for her, and is worth the discussion with the doctors.

In my previous post my concern was that she had had these multiple surgeries and not had radiation in the process. Looks like they finally have reconsidered their direction.