#6178     10-01-2005 10:51 AM      |       Joined:  Aug 2005  Posts: 17    Member   |      OP      Member    Joined:  Aug 2005  Posts: 17  |    Is there a difference in the recovery time, treatment or survival rates for tonsil vs tongue cancer?  I realize the surgery is different.  Sheila        
Wife to Tim Right Tonsil CA IV dx 6/24/05, IMRT 36 treatments ended 8/29/05, Chemo (cisplatin and 5FU) ended 9/16/05
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#6179     10-01-2005 01:34 PM      |       Joined:  Mar 2005  Posts: 109    Gold Member (100+ posts)   |           Gold Member (100+ posts)    Joined:  Mar 2005  Posts: 109  |    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        
Wife of Jerry - Dx. Jan '05.  SCC BOT T1N2BM0 + Uvula T0N0M0. Stg IV, Surg on BOT and Uvula + Mod Rad Neck Diss.(15 rmvd, 4 w/cancer), IMRT 33x. Cmpltd 5/9/05.
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#6180     10-02-2005 01:00 AM      |       Joined:  Oct 2002  Posts: 546    "Above & Beyond" Member (500+ posts)   |           "Above & Beyond" Member (500+ posts)    Joined:  Oct 2002  Posts: 546  |    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        
Was primary caregiver to my daughter Heather who had stage IV base of tongue SCC w/ primary recurrence. Original diagnosis August 21st, 2002. Primary recurrence  March 18th, 2003. Died October 6th, 2003.
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#6181     10-03-2005 12:15 PM      |       Joined:  Jul 2005  Posts: 624    "Above & Beyond" Member (500+ posts)   |           "Above & Beyond" Member (500+ posts)    Joined:  Jul 2005  Posts: 624  |    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.         
CG to husband Barry, dx. 7/21/05, age 66, SCC rgt. tonsil, BOT, 2 nodes (stg. IV), HPV+, tonsillectomy, 7x carboplatin, 35x tomoTherapy IMRT w/ Ethyol @ Johns Hopkins, thru treatment 9/28/05, HPV vaccine trial 12/06-present. Looking good!
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#6182     10-03-2005 12:36 PM      |       Joined:  Feb 2005  Posts: 2,019    Patient Advocate (old timer, 2000 posts)   |           Patient Advocate (old timer, 2000 posts)    Joined:  Feb 2005  Posts: 2,019  |    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?         
SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia.  "When you're going through hell, keep going"
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#6183     10-03-2005 01:30 PM      |       Joined:  Mar 2005  Posts: 109    Gold Member (100+ posts)   |           Gold Member (100+ posts)    Joined:  Mar 2005  Posts: 109  |    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        
Wife of Jerry - Dx. Jan '05.  SCC BOT T1N2BM0 + Uvula T0N0M0. Stg IV, Surg on BOT and Uvula + Mod Rad Neck Diss.(15 rmvd, 4 w/cancer), IMRT 33x. Cmpltd 5/9/05.
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#6184     10-03-2005 04:00 PM      |       Joined:  Mar 2002  Posts: 4,918 Likes: 68    OCF Founder Patient Advocate (old timer, 2000 posts)    |           OCF Founder Patient Advocate (old timer, 2000 posts)     Joined:  Mar 2002  Posts: 4,918 Likes: 68  |    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.         
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.    |      |       |                      
#6185     10-04-2005 12:19 AM      |       Joined:  Feb 2005  Posts: 2,019    Patient Advocate (old timer, 2000 posts)   |           Patient Advocate (old timer, 2000 posts)    Joined:  Feb 2005  Posts: 2,019  |    "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.        
SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia.  "When you're going through hell, keep going"
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#6186     10-04-2005 02:54 AM      |       Joined:  Aug 2003  Posts: 1,627    Patient Advocate (1000+ posts)   |           Patient Advocate (1000+ posts)    Joined:  Aug 2003  Posts: 1,627  |    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.        
SCC Left Mandible. Jaw replaced with bone from leg. Neck disection, 37 radiation treatments. Recurrence 8-28-07, stage 2, tongue. One third of tongue removed 10-4-07. 5-23-08 chemo started for tumor behind swallowing passage, Our good friend and much loved OCF member Minnie has been lost to the disease (RIP 10-29-08). We will all miss her greatly.
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#6187     10-04-2005 06:26 AM      |       Joined:  Nov 2002  Posts: 274    Platinum Member (200+ posts)   |           Platinum Member (200+ posts)    Joined:  Nov 2002  Posts: 274  |    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       |      |       |                
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