Dear friends,

I finally got the results of the pathology report. The margins around the tumor all came back clean. However, of the 46 lymph nodes taken one did come back positive. The ENT surgeon stated that it was "encapsulated" and was the closest node to the tumor. He does not believe radiation would be indicated at this time. I will be having monthly appointments with him to check up on things and I know it would be that long before my tongue is healed enough from the flap to endure radiation.

My question is this: should I be considering radiation anyway? I would love to be able to forgo it but I don't want to have a recurrance. Any advice or suggestions would be greatly appreciated.

Peace,

Fr. Mike

Congratulations, Fr. Mike. That is good news!
I had similar results and went for radiation with no hesitation and agitated until I got chemo too. Why? Every long-term survivor I was aware of had undergone the 1-2-3 treatment. Scientific? Of course not, but I feel that I have utilized every option available to me. Early on, I decided my job was not to spare myself discomfort, but to do everying possible to absolutely destroy the cancer. So far, so good (grin). However,I think discussion with one or more doctors will give you much better information than I can on which to base your decision. Again, your news is wonderful and thanks for posting it for all of us to see.
Joanna

OK, so now you are a T2N1M0. An ENT is a surgically oriented doctor and his preference is based on his education and personal experience. You need a consultation with a radiation doctor to give you a balanced perspective. You have no doubt read my many posts here regarding recurrences and how I feel that that is a misnomer for what is actually an occult metastasis that rears its ugly head later. Combined therapies have better long-term outcomes. I offer you this quote from the Journal of the National Cancer Institute just a couple of months ago.

"Treatment of the neck is a highly controversial point, but many authors feel that elective treatment of the neck is indicated even for T1 neoplasms based on the incidence of occult metastases, 20-33% in most series, as well as the poor results with a later salvage procedure. ***Most authors advocate elective treatment of the neck for stage II disease (T2N0) for the same reasons, and the incidence of occult metastases in this group is even higher. Supraomohyoid neck dissection is often the procedure of choice for management of the clinically negative neck, with radiation being reserved for those patients with lymphatic involvement, especially if there is evidence of capsular invasion.*** The problem of understaging has been frequently cited in reference to carcinomas of the oral tongue, and reports may be found addressing specific factors which may indicate those patients with early lesions most likely to harbor occult metastases, and thus be the most likely to benefit from prophylactic treatment of the neck. Such factors as depth of penetration, histologic grade, perineural or perivascular invasion have all been investigated but none are widely accepted to have reliable prognostic value."

(The marked emphasis is mine so you don't get lost in everything else.) The point is, up to 33% of those with no visible cervical involvement harbor a metastasis in that area. You have one for sure, though caught early. Just because current scanning technology, MRI and CT, do not see it now, does not mean that it isn

Congtatulations Father Mike, It's hard to understand why all the different treatments for similer problems. From all the information i've read so far I am surprised the doctors are not suggesting radiation. My nodes all came back clean yet radiation was suggested after the surgery. I don't want to take the easy way out as I'm told there is no easy way out. I will do everything I can to increase my chances of wiping out the cancer.

Joanna, You must have lobbied for chemo as it sounds like they didn't suggest it. I have similer thoughts as you do, an all out assult on this cancer. Both my surgeon and rad on'gist have not mentioned the need for chemo. If it improves the chances to wipe out any cancer why are they not suggesting this option?

It was explained to my husband (stage 4 tonsil cancer with 3 positive nodes) that the chemo was given concurrent with radiation to enhance the effects of the radiation. Made the tissue more responsive is kind of how we understood it.

Daniel, there is a recent study, quoted here on the forum, purportedly showing there is no benefit to concurrent chemo. My decidedly unscientific thinking, however, kept going back to the long-term survivors who had chemo, so I wanted it too. You've heard of visualization, I am sure, and while that poison stuff was being pumped into my veins, I could "see" it attacking any stray cells that were not wanted. (One has a lot of time on one's hands while getting chemo.) To their credit, the ENT and the Rad Onc are both believers, as was the Med onc who supervised the drugs. I lost my hair, all my white cells, and was urpy some of the time, and I would do it all again if need be, but then I am a kind of all or nothing person anyway, so this schedule fit for me. Bottom line, there is "proof" either way about it being effective, so I lined up with the long-term folks (grin).
Joanna, long-term wanna be

Fr. Mike, While it may be a "setback" for you it could have been much worse and so I am happy for you!

As to the other comments about "stomping out" the cancer and why some treatment options are not suggested, remember that both radiation and chemo can potentially kill the patient as well as the cancer (that may be a 100% success rate by some statistics ) so especially with chemo not showing a huge benefit it may not be worth the risks in every case.

More for us to have to ponder! Do the best you can to live.

Remember that there are two different kinds of chemo. One which is given during radiation to enhance the effects of radiation, one that is given after radiation to deal with distant mets or more advanced disease. Those that get the second type are usually stage 3's and almost always 4's. Anyone whose doctors believe that radiation alone can knock this down with a little help, gets the first kind. I chose not to have chemo. It wasn't offered to enhance the radiation, and at the end, all the MDACC docs thought that I could do without it. I went with their call, they are the experts that have kept me around on this side of the grass. As early as your cancer was I would opt for IMRT but not chemo. And as a side note, while it has been said here before, and mentioned again by Mike that radiation and chemo can kill you, this is an exaggeration of the point. Volume of exposure is what allows us to tolerate these poisons being introduced into our systems. No one is going to die from the treatments. They may make you sicker than hell, and you may wish to die (like me), and they may cause some nasty long-term side effects, but kill you? No. I know that Mark did not mean this literally, but you wouldn

I am the one receiving concurrent radiaton and chemo to cure my stage 4 cancer. Unlike Joanna I didn't lose any hair during treatment and like Brian, the chemo effect made me very very moody and the wish to die was dominant at that time. I was so restless that in one minute I liked to lie down but by the time I lay on bed, I wanted to go back to the sitting room.A feeling that still makes me scared even now.Since I knew it was only a temporary effect, I fought my way through.I never doubt the effect of chemo on my type of cancer as I always claim myself to be the most cooperative patient. I trust the team of doctors know what suits me best.

Karen stage 4 tonsil cancer diagnosed in 9/01.

And just to futher confuse the issue, I had a combination of both of the kinds of poison chemo drugs that Brian describes -- at the same time! It was the "all over" one that caused my hair to fall out. I was SO lovely (grin).
Joanna

A foot note to my post above:

I don't want anyone to think I was suggesting that the treatments given by competant medical professionals were more dangerous than the disease we are dealing with.

I intended to remind people that there are other effects than simply killing cancer cells. Long term potential effects on other organs and increased risks for future disease do exist with chemo drugs and radiation. I am confident that proper consideration for these risks are made by doctors every day and we should tend to trust them.

What this boils down to is that we shouldn't automatically feel left out or mistreated if our treatment protocols are different from one another.

Fr. Mike, I agree with Brian that you should look into IMRT radiation.

Hi Fr. Mike,
I just read a recent study that one Cisplatin treatment actually has a better outcome than the standard two or three (when used as a radiation enhancer). So that may be something to consider discussing with your doctors also. It does increase the survival rate 6% more, according to the statistics, than just radiation alone.

Like my doctor told me, you have decide which tools they will use in their bag of tricks.

You can also look at the NCCN practice guidelines - they have multiple possibilities for treatment of all the various head and neck cancers. Some are rated (class 1-3) Class 1 being a consensus about the efficacy to Class 3 where they pretty much disagree.

Hi Fr. Mike!

Hope this finds you regaining your strength. I don't think we can call your 1 positive lymph node a setback, because we never knew what the status of the nodes was. Does that make sense? So, while no nodes would have been better, one node isn't the worst news.

I am not the person to tell you aye or nay on radiation, but I am certain you will make the right decision for you. You have tons of support from all of us, and the guy upstairs. I know you and your doctors will plan the proper course of treatment for you. Take care, and I am sending hugs from Oz to Jersey. (Hope you aren't being affected by the black out in NYC.)

Sincerely,
Lisa <-- in Ks with Dorothy, Toto and the gang

I have often wondered why my doctors didn't have me do any chemotherapy along with the radiation. I read that alot of people do, but I read all that after I completed radiation and felt a part of life again. There seem to be conflicting beliefs that it helps with head and neck cancer. My doctors were happy that my tumor in my jaw had not wrapped itself around anything, it was within my jaw, and only the node sitting up against the tumor showed any signs of cancer.....this cancer didn't show up on my CAT scan two weeks before surgery. My margins were clean, in fact the surgeon said they were large and clean. He said the radiation was my "insurance policy" to clean up anything microscopic left behind and that I didn't need chemo and I was put at a stage 4. He also said that if anything does re-occur it will be caught early so they will have a better chance dealing with it. What is everyones opinion on this thought??

Hi All:

Fr. Mike-my continued best wishes for your steady progress.

I would appreciate it greatly if you all indulge me for a moment while I like make some comments about citations of research studies I have noticed are being passed along more frequently in our forum such as the one Gary mentions above on Cisplatin.

In general, most medical and nursing studies have as their intent examining a phenomenon, such as oral cancer,in a comprehensive way that will in turn,provide more information about a condition and encourage changes in practice that will improve outcomes for our patients.

As a nurse educator and doctoral student, I spend alot of time reading studies on a variety of topics inlcuding oral cancer which in now part of the focus of my dissertation in which I will be looking at emotional effects on caregivers of those with oral cancer. Stay tuned for a survey to be posted on this website in the coming months.

I would urge Gary and others to please use caution when citing studies out of context without the benefit of careful comparative analysis of the data including the statistical information which may or not be credible. While Gary raises an interesting point about the Cisplatin study,one would need to review the entire report of the study including the number of partipants and study variables before making a call that it is successful and recommending a treatment to others.

It is true that all of us should ask each doctor we see about their knowledge of current research data pertaining to oral cancer. However, the darker side is that not all studies are pure and some researchers both select subjects that will make results look good (the recruitment pitch) and/or lump together subjects that are apples and oranges such as the 35 year old otherwise healthy person who has oral cancer in the same group as the 80 year old with diabetes,lung trouble, and oral cancer.Thus, it is hard to make sense of the conclusions in some of these cases.

The additional point I would like to make is that you need to derive information from several places (such as the American Cancer Society) and hold it against peer reviewed journals such as those that pertain to head and neck pathologies that may provide the same or different data.Scrutiny and comparison are key to the research process as is being a healthy cynic.

Gary, I want to commend the degree of legwork you are clearly doing to obtain information on oral cancer and share it with others here. I would ask you to please tread cautiously when citing studies as a lay person. I am not meaning to be offensive in any way but even those of us who look at studies regularly typically consult with others in our fields to compare interpretations before making recommendations to patients.

Thanks for listening,

Kim

I would like to echo Kim's posting. Unless you are familiar with the manner in which peer reviewed publication of studies is done, quoting one or the other without consideration of ALL the current publications on similar subjects, many of which will disagree with the conclusions in the report that you are reading, is a bad idea. I know this seems illogical, but it is a fact, that indeed different researchers find different results, and it is only after a period of time and further research, that any given idea can become the gold standard. A lot of what gets published is considered preliminary. That means that while the results of that report are valid, until that has been duplicated by other researchers, it only is a preliminary finding. Often the good results of a study have to be applied with information from another study to gain an actual, usable, treatment that shows significant improvement when applied to very large populations of patients. Quoting that study or finding, is not a good idea, as it is only one group, but further it is a bad idea to do so without knowing the details; such as the uniqueness of the population of people that were selected for the study and the characteristics they have that were set out in the parameters of the studies, established by the authors. Perhaps all the people in the study were over 65, or perhaps they had all had a previous condition, etc. If you take the synopsis of the study alone and believe it to be gospel, you are in trouble because the results only apply to that group of people with those same characteristics. They don

Hi Kim,
Thank you for your post and your concerns. I would like to fine tune a few conceptions and misconceptions. First off I have been in the medical device industry for over 30 years and specialize in radiological devices. Many of it in either quality assurance, clinical trials or regulatory affairs. So I am not really a "lay person" per se. However I am NOT a doctor and only wish to lead people to finding their own wisdom to determining their destiny.

My advice to people has always been to do your homework, seek out the most qualified doctors and institutions, consult with your doctors, question your doctors and be your own advocate. I don't want to take personal responsibility for anyone's treatment decision. The studies I bring to Brian and the group always have identified sources and come from credible research institutions.

I personally believe that the NCCN Practice Guidelines are the "gold standard". The NCCN customarily always recommends finding a clinical trial to participate in wherever possible, so treatment options are always in a state of flux, so one must do the footwork to determine their best course of action. And anyone who works in this industry knows that guidelines are exactly that, guidelines - not absolute and as Brian put it "NO TREATMENT GUIDELINE IS PATIENT SPECIFIC".

The study I mentioned about "one time" Cisplatin treatment is ON the OCF site, under Oral Cancer News, 3/25/03. And according to Brian "...study is quoted by OCF, I am required to have a panel of my advisory board approve its inclusion for appropriateness and correctness." And this is not the only study that questions the efficacy of Cisplatin in the management of throat cancers. I personally had it anyway based on information and advice from my team of doctors, knowing full well about the question of the risk/benefit of it and its toxic side effects. I regret that I mentioned the 6% improvement in outcome in the same breath as the one time treatment. The 6% improvement number came from another study, based on the standard course or 2 or treatments from a study at Johns Hopkins. http://www.hopkinsmedicine.org/press/2002/MAY/020518.htm

Unfortunately that study came out about a week after I was finished with treatment or I would have taken my oncologist to task for this. I suffered greatly and still suffer from the toxic effects of 2 Cisplatin treatments.

I cannot help but feel as if I have been personally attacked one too many times lately, either for trying to help people find a deeper meaning and solutions to this from a spiritual perspective, or simply attempting to aid others in making their own decisions based on whatever knowledge I can bring to the table (which is what a forum is -this isn't "Ask Mr. Doctor" after all), either based on my own experience, strength and hope or information I have gleaned along the way. I have always attempted to disclaim that my advice should be taken, only that we all have choices to make, we are ultimately the captains of our own destiny and that knowledge is power (and in fighting a deadly disease could mean the difference between life or death).

So with that I will be stepping down off my soapbox and taking a vacation for a while as I have my own ongoing treatment issues to deal with.

Gary

Gary

Gary:

I appreciate your thoughtful reply. In retrospect,I could have added more in my original message that helped you understand my concerns better.As luck would have it,Brian went where I was trying to go and put into words my secondary concern that some folks, especially those who are new to the site, read information here as absolute cold hard fact and hang on every word written by the members in their states of feeling scared and desperate for answers.

Many of us who have been on the board awhile have confronted the personal responsibility and accountability we feel when posting regularly for this very reason. I am equally confident that you share the quest the forum has to share state of the art information ( and you clearly are accountable) with others as evidenced by how much time you take to do so in your posts.

At times, being part of an open forum means developing trusting relationships in which members can share positive and negative feedback in the hopes of creating a good learning experience for all of us. Many readers will probably learn from the dialogue above that the next time a health care provider says they "know of the best study on oral cancer" that there
are more questions to ask about the context before assuming that study is best for all people.

I would feel badly if you stepped away from the board because you felt attacked. It has been the case before that some of us have had different perspectives on topics and have articulated those feelings here. My experience is that OCF members can "agree to disagree" when necessary while keeping the greater good of our mission in sight.

Some of the best learning I have had here has been around provocative and confusing topics such as treatment options where the opinions differ vastly (among OCF members and the medical establishment).

Part of what we do here is help members, especially the ones with less professional experience in the medical industry than you or I, to to wade through data and options and learn to develop healthy skepticism and use it as an enhancement(sounds like an oxymoron) to the trusting doctor/patient relationship when making treatment decisions.

Best,

Kim

I think this thread has moved off of the original posters question far enough and has had plenty of time to be explored and responded to. I am going to close this thread to new posts. If anyone cares to revisit any of the questions, observations, etc. please start a new thread.