Is there a difference in the recovery time, treatment or survival rates for tonsil vs tongue cancer? I realize the surgery is different.
Sheila

Sheila,

My understanding is that the tonsils and base of tongue are part of the oropharynx and that the oral tongue is part of the oral cavity. I have seen studies showing different kinds of treatment and survival rates for the oropharynx and oral cavity. I'm not sure about the recovery time. A few recent studies using IMRT have shown particularly good outcomes for cancer of the oropharynx for local-regional control as well as 3-4 year survival. Longer term results aren't available.

In a large University of Iowa retrospective study I recently read, they treated most oropharyngeal cancer patients with definitive IMRT (no surgery) with concurrent chemo. The oral cavity cancer patients were primarily treated with surgery then IMRT without chemo. Of course, this is only one cancer center and doesn't necessarily reflect what is happening across the country.

I'm certainly no expert but I have been reading some full-text studies recently. I think to try to reassure myself more than anything!

Connie

Sheila,

I don't think there is a big difference in the treatment or recovery time. Generally, though, tongue cancer is thought to be more aggressive, particularly on the base of the tongue. Because of its location, quite often it is not caught until the later stages, which makes for worse survival rates.

Statistics, however, don't mean much, as each case is unique. A Stage 2 tongue SCC patient can die and a Stage 4 tonsil SCC patient survive and vice versa. FWIW, based on my personal experience with my daughter and on research, if I knew I was going to get SCC and had a choice, I would choose tonsil over tongue in a heartbeat.

Rosie

Sloan-Kettering, M.D. Anderson and Johns Hopkins (three of the top CCCs) almost always treat base-of-tongue cancers with chemoradiation and do not do up-front surgery because of the potentially serious impacts on swallowing and speech. However, at least at Hopkins, cancers in the oral tongue may be treated with surgery first if this can be done without major damage; if not, then they do chemoradiation. At some centers brachytherapy is done in the tongue (radioactive seed implants) -- Beth Israel in NYC and also, I think, Sloan will do this.

In never-smokers a certain proportion of tonsil/base-of-tongue cancers are human papilloma virus-16 induced and these have a much better prognosis than those caused by smoking or other environmental carcinogens (Gillison's 2000 paper said 59% better survival and she told us last Friday that this difference is holding up in her subsequent research.). This difference appears independent of cancer stage or nodal involvement (!), age and gender of patient, a very important point. While initial recommended treatment is the same (chemoradiation), the risk of recurrence after treatment is fairly low. There is a HPV vaccine entering clinical trial which may prove to have a role in treating HPV+ tumors in some future year (but not now).

Gail

Husband Barry DX 6/21/05 Stage IV SCC right tonsil, BOT, 2 lymph nodes, tonsillectomy, 33 treatments radiation (Tomo-Therapy ) plus 7 weekly doses carboplatin, treatment completed 9/29/05 at Johns Hopkins.

oral tongue cancers are less likely to be HPV induced?

fwiw, I heard from one rad. oncologist (but he is the suspect one I first went to here who thought I didn't need rad and left suddenly) that he thought in general the cancer became more aggressive as it moved back along the tongue. This was a man with some years experience as an RO at another major center before he came to our neck f the woods so I'm not totally discouting it. I got the distinct impression from him that oral tongue cancer was less aggresive, in general, than BOT. Has anyone else read or headr this?

I've read in other posts here that base of tongue is particularly agressive. All I know is that the base of tongue is grouped in with tonsils and soft palate as part of the oropharynx and three of the recent IMRT studies I have read are specifically looking at those three areas and the results don't seem to be that much different between the three. The MD Anderson study shows outcomes for BOT and tonsils to be extremely close. The Univ of Iowa study shows oropharyngeal cancer in particular to be getting good local-regional outcomes. The Sloan-Kettering study has an even mix of BOT and tonsil cancers and there is not reference to one having a better outcome than the other. One shows a table of the results of seven other published series using conventional radiation and I don't see much of a difference between tonsil and BOT outcomes there either.

Connie

Gail and cclark.... This whole discussion about HPV survival rates needs to be toned back. Dr. Gillison is at the head of the pack, but collaborating with many doctors around the world. There is data that shows SOME survival advantage vs. tobacco-induced cancers. But the number of mitigating cofactors is a long list. We don't know enough about all this, and given that, as stated by other investigators, the factors such as stage, age, co morbidities and many, many other things can affect the numbers, you guys need to let this issue lie dormant for awhile, till the data is more finite. Please note that even an authority on Gilison if you listen to her lectures constantly uses the words appears, or may. It is only confusing patients for the most part since they have no way of knowing if their cancer was HPV induced, HPV containing, etc. none the which mean the same thing. Further, the data is incomplete since the cofactors have not been extrapolated by all the contributing investigators into the final conclusion. We want to be helpful, not confusing. I am getting emails about this daily from people on the board for clarification. Even though I am up to speed, and spout more facts and figures, the truth is that this is not useful information for them. They can do nothing with it. For those who may believe that they were not HPV related in cause, it is a depressing thought that their cancer is somehow worse, different, more virulent, etc. than someone else's of the same stage. This is the trouble with drawing conclusions at this time except in generalities about this issue, something that Gillison has warned me about and I walk carefully on in my lectures around the country. You need to consider this in your future postings as well. The HPV vaccine will not be used in treatment as the FDA is only releasing this for cervical applications in the near future, (and will be mostly used outside the US in third world countries where annual cervical exams are not the norm) and the vaccine will be used in PREVENTION for years to come and not treatment. That will involve many years of clinical trials before it makes it to reality in existing patient terms. As to the aggressive nature of lesions in the back of the mouth, they are in a lymph tissue rich area and metastasize locally and regionally more quickly. As to saying the risk of recurrence in a post is low, I have asked that we not speak in absolutes as the are many idiosyncrasies which you are not aware of, and the reading of a few studies does not make any of us people that can make an absolute statement. Hell, the doctors at the CCC are more careful than this, and we should be more conservative in our statements. This does not negate the fact that you are both some of our stronget informational posters. I just want to keep the tone that of a caregiver or patient, and yield to the fact that data is young, incomplete, and our non researcher understanding of it may be incomplete.

"As to the aggressive nature of lesions in the back of the mouth, they are in a lymph tissue rich area and metastasize locally and regionally more quickly"

thanks. This makes sense.

Thank you for that post Brian, it was much needed. I refrained from sending you an email as I knew you would probably get many.

The 59% better survival statement had me shaking my head, 59% better then what???? Some come on here looking for hope, needing hope desperately to make it through their treatment. Reading the last post by Gail would knock the wind out of some newcomers. It even gives some of us "oldies" an uncomfortable feeling.

The entire issue of HPV is of no matter to someone like me, I already have several active metastases. I can be a little simple minded, but I find the discussion a little depressing. It has become a stealth statistics discussion, forecasting a rosy outcome for those of us that have HPV as a precipitator of oral cancer. I understand that HPV+ members find some comfort in these studies, but the constant discussion of this research, which is still fairly new, offers little to the already diagnosed and treated patient. As a matter of fact, it appears that the only true benefit of the discussion would be to recruit participants in the study. Even then, you would need to be in close proximity to the study location. Again, just the lay opinion of a 3 year member.

Glenn

"It has become a stealth statistics discussion". It has indeed. I personally think this is another example of why we need a statistics topic to more openly and critically eaxmine the data for those interested and to prevent the people who find this stuff irrelevent or discouraging from being disturbed by it.

And "59% of what" is an excellent question and, I suspect, were the data presented another way, it would not look like such a huge advantage. Even if it really does exist.

I found myself nodding my head in agreement when reading Brian`s post.
I try to answer as many newcomer posts as I can but, I could see where they would be discouraged from joining our forum.
The discussions have become a lot more skewed towards facts,figures and conclusions.
Maybe Nelie is right, and there is a need for a Statics topic on the board for those who enjoy such discussions, that`s not my call.
I do know, when I found this forum I was looking for help in the day to day dealing with Base of Tongue cancer.
Quite frankly, all the talk about that particular form of cancer being so much worse than others scares me.

I don`t like being scared!


Marica

My two cents worth.

OK, Ok -- we will let this lie dormant if you think it is best -- two things however, the vaccine I refer to is NOT the about-to-be released HPV-16 vaccine for prophylaxis of cervical cancer, but a HNCSSC-specific DNA vaccine developed over last 8 years at Hopkins and yes, it will be YEARS before it may make it into the treatment for HNC, if ever. It is just entering clinical trials.

To clarify, the 59% that Gillison's 2000 paper references was the difference she and her co-authors observed when comparing age/stage etc. matched HNCSSC cases that were HPV+ or HPV- , followed over a number of years.

Finally, we have never gotten the impression from any of the oncologists at Hopkins that BOT/tonsil cancer is worse than any other oral cancer -- but all have said that HPV+ is a favorable prognostic factor and that most HPV+ cancers do present in tonsil/BOT. (But not all tonsil/BOT cancers are HPV+!)

And that is that -- if people don't want to explore this subject, that's OK with me. There's lots more to talk about on the forum!

Gail

The discussion of a

Brian,

Just catching up here. And no problem, I understand, and will back off from any future posts of this nature.

I'm doing personal research right now to read as many full studies as possible that relate to my husband's situation and recovery and learn as much as possible about the latest info coming in on IMRT results, neck dissection, and anything else pertinent to him. I am tired of accompanying him to doctor's appointments and being left uninformed and somewhat scared each time by off-the-wall comments they often make. This personal exercise has actually armed me with some real facts and a better understanding of treatment differences, issues, etc. so that I can make better sense, as his patient advocate, of what his doctors sometimes insensitively say.

However, I totally understand what you are saying from a more global OCF perspective and apologize for my part in anything that might have led to anyone's discomfort.

Connie

I would like one question answered that is not statistical in nature. How is one tested for HPV if its not a test of tumor tissue? For women it is really NOT a moot point whether or not their oral cancer might be HPV related because, if it is, they are also way more vulnerable to cervical cancer. I know I can never know for sure what cause my oral cancer but I would very much like to know if I have HPV and need to be more concerned about another cancer.

Nelie

Connie,

I can really appreciate your post in that I believe most of us came here or stayed here because we were in search of others that shared our journey (or our loved one's journey) so we could have a little help in making to the next leg of the relay. I, personally, have found that all the bizarre things I felt were so unique to me were, in fact, experienced to some degree or another by almost every survivor I have met. It was a lifesaver to hear ways to be more proactive with the medical team and in my life.

That being said, it seems like from time to time we get into the same discussion about studies that may or may not be relevant and we try to keep the discussion moving towards leading edge technologies that may keep others farther away from the path we are all on today. There is something new on the horizon always and unfortunately none of it has proven yet to be the silver bullet to rid the world of cancer. Let's face it, this particular disease (SCC) has been treated the same for so long that it really is refreshing to see some of the discussions taking place today that may yield results in the future.

Your husband is fortunate that he has an advocate that is taking the time to arm themselves with as much information as possible. Gathering all you can is the first step of directing the outcome and all of us should work exactly towards that.

Ed

Connie.... you have no reason to apologize for anything. The more information you have the better questions you can ask and the better decisions you can make. However this is a personal journey and what works for me for instanace, does not apply to someone else even with what, on the board, seems to be a similar condition. The truth is I don't know enough about them to make really specific recommendations to them, only to hopefully point them in a direction that they will pursue as their own journey of discovery and answers develops for them. Also not everyone has the ability to decern between early data, single source data, etc. as information that has, or does not have, value to them and thier unique situation.

Nelie, the good news according to Dr. Gillisons work is that there is no evidence that in a given individul's body that the HPV virus in one location is capable of migrating to another. Hence a cervical cancer patient is not necessarily at risk for oral cancer because there is no evidence that it is transfered via the circulatory system from one local to another.

Connie, you did say something that I will emphasize:

"I am tired of accompanying him to doctor's appointments and being left uninformed and somewhat scared each time by off-the-wall comments they often make."

This is a common reality and one that we probably have (or will have) suffered. That doctors are prone to comments that leave the patient wondering or in fear for no reason. Doctors should realize that the slightest facial expression can change a sincere "you are doing great" to "I think he saw something and he just isn't telling me yet" reaction. Knowing other people have been there and done that has been a great comfort to me. Being aware and educated is always of value when working with caregivers.

Back to statistics for a moment; if you are here on this site because you have this cancer, you already are outside the statistics because this is a fairly rare cancer. Further, if you are age 50 or younger and have this cancer you again are outside the statistics. If you are here and didn't use tobacco or alcohol, you are outside the statistics. If you are here with a HPV positive tumor, you are outside the statistics.

My point (I'll try to make a clear point) is that statistics did not protect you or me from getting this cancer! Neither will any statistic cure me. The numbers simply do not matter to me the patient/survivor.

Frankly, statistics do not matter to anyone coming here with a new diagnosis either!

Damn the statistics and full speed ahead!

Mark,

My on'gist is a very straight forward no B.S. Doctor. It's one of the things I like about her. She tells it like she sees it. Takes the time to answer any question I have and explains it very well. The hell with the stat's we will either survive or we won't!!!

Danny Boy

I asked my head & neck surgeon why I was one of the "lucky" ones and he responded "luck". Like Danny's doctor, they didn't sugarcoat anything. Even though I look and function pretty normally now, I still have a high probability of being dead in a few years (according to the so called statistics) so my wife and I try to treat each other with kindness and make the best out of each day. She almost got hit by a car in a crosswalk a few days ago so you just never know. Life is precious - savor it and don't let the fear take over. The HPV study, by the way, was based on a patient sample size of 253 persons (123,000 people are diangosed with oropharyngeal cancer worldwide each year).

I have to admit though that I get a guilty pleasure out of the statistics, research, and all of the clinical trials going on - but most of it is in the UBIF category or, in my case, the TMWIWTH (tell me what I want to hear) group.

Many times I feel that the media is irresponsible in the way that they report miscellaneous dangers, miracle cures, etc. Take Iressa for instance - it was supposed to be the greatest cancer cure since they invented sliced bread, then a subsequent, broader study showed that the PLACEBO was more effective - go figure! Of course you can bet that the subsequent study didn't make the first page except maybe in the business section for their stock values plummeting after the FDA sent out the "Dear Doctor" letter.

Years ago I was a "hopeless dope fiend and now I am a dopeless hope fiend" so I suppose that carries over to the "cancer adventure*" (*credit to my fellow survivor buddy Joanna for that concept) as well.

I am not sure that I agree with Mark that the statistics "do not matter" to the newbies, they may not be relevant but I think they do matter - they did to me. In my first meeting with my oncologist he had printed out for me the AJCC statistical survival profile for oropharyngeal cancer and even highlighted the stage III/IV column. Many come here scared out of their wits and need to know that the statistics don't reflect all of the many variables that make each one of us a unique individual and that also includes how we respond to treatment - I think that is what Mark was really trying to say. Further complicating the statistical "evidence" is that fact that the numbers usually lag by a year or more and constant refinement of treatment protocols by the NCCN and NCI member institutions would not be immediately reflected.

I don't think that anyone needs to apologize. This is classic water cooler stuff and what public forums are made of. Everyone is right actually...

The following is a link to the NCI, Treatment statement for Health professionals, and there is some very detailed information there concerning tongue vs. tonsil cancer to get the topic back on track. http://www.meb.uni-bonn.de/cancer.gov/CDR0000062924.html

If you are continuing to drink alcohol, smoke or use smokeless tobacco products, you need to read and heed as well.