#40490 11-09-2006 09:21 PM | Joined: Nov 2006 Posts: 7 Member | OP Member Joined: Nov 2006 Posts: 7 | Just got a diagnosis of T2N0M0 base of tongue, 1.5cm visible but thought to be about 2cm. Case conference consensus was bilateral radiation alone (about 15 people present, radiologists, surgeons, etc). My primary care H&N specialist is a surgeon and both he and the radiologist think either partial glossectomy+selective neck dissection alone or RT alone is advisable and up to me to decide.
I read and am told by them that 5-yr survival is about the same and the choice should be based in my case on comparative morbidity of each.
Any opinions/suggestions? Safest would be to do both.
How risky is it to first do partial glossectomy (he said about 1/3 of tongue would be removed; the tumor is far from the midline) If excised nodes are all negative and surgical margins adequate, then RT. That option *seems* logical, i.e, reserve RT for afterward, given CT last week indicated N0 status. But is it?
PaulT
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#40491 11-09-2006 09:23 PM | Joined: Nov 2006 Posts: 7 Member | OP Member Joined: Nov 2006 Posts: 7 | I meant to say: do the radical surgery alone, and not do RT afterward if the tested nodes are negative.
PaulT
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#40492 11-10-2006 01:51 AM | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | Senior Patient Advocate Patient Advocate (old timer, 2000 posts) Joined: Sep 2006 Posts: 8,311 | I got 5 opinions and finally went with Moffitt. No surgery with 2 nodes positive. So far all clear. Even if you go with surgery I would still consider Rad. But even without the surgery the Rad alone should get rid of the cancer, I would think.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
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#40493 11-10-2006 03:30 PM | Joined: Jul 2006 Posts: 446 "OCF Canuck" Platinum Member (300+ posts) | "OCF Canuck" Platinum Member (300+ posts) Joined: Jul 2006 Posts: 446 | I was stage IV left mandible, and I went surgery and radiation.The radiation was precationary since there were 56 nodes taken, none showing anything. I went through the agonoy of radiation to give myself the absolute best possible chances, since the tumor was confined.
Again, the Doctors suggested this would be the tough route in the short term, with the best possible outcome. It was miserable, and I'm only now starting to feel even a little bit like my old self....hopefully I've gotten myself a new lease on life though Wayne
SCC left mandible TIVN0M0 40% of jaw removed, rebuilt using fibula, titanium and tissue from forearm.June 06. 30 IMRT Aug.-Oct. 06
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#40494 11-10-2006 07:47 PM | Joined: Nov 2006 Posts: 7 Member | OP Member Joined: Nov 2006 Posts: 7 | Thanks, davidcp and dragan. I must decide this by Tuesday. This website has been instrumental in shifting my thinking away from surgery (partial glossectomy/flap/nodes) alone option toward RT. I may have one parotid gland temporarily moved out of the way (under my chin) before RT begins and do subcutaneous amiphostine concurrently, if I can tolerate it. Both the 2006 Clinical Guidelines and my case conference consensus give the nod to definitive RT for base of tongue SCC T1-2/N0-1. Like democracy, RT is a terrible option (earlier today I read all the way through FloridaBill's superb diary), except for all the rest. If any others have opinions on this pls post. Much, much thanks.
PaulT
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#40495 11-11-2006 05:30 AM | Joined: Apr 2006 Posts: 583 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Apr 2006 Posts: 583 | Paul,
OK, call me stupid but I find it interesting that they leave the choice up to you? What a hard decision to be left with. Did you get more than one opinion? I would be nervous trying to make this type of decision.
My Cancer Team, just told me what was best & why and that was it. I had Surgery, Rad, & Chemo. I realize mine is different than yours.
I wish you luck on making your decision.
Take care, Diane
2004 SCC R.tip 1/4 tongue Oct. 2005 R. Neck SCC cancer/Chemo Cisplatin 2x/8wks. Rad. Removed Jugular vein, Lymph gland & some neck muscle. TX finished 1/20/06... B.Cancer 3/29/07 Finished 6/07 Bi-op 7/15/09 SCC in-situ, laser surgery removed from 1st. sight. Right jaw replacement 11/3/14. 9 yrs cancer free as of Jan. 2015
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#40496 11-11-2006 07:57 AM | Joined: Nov 2006 Posts: 7 Member | OP Member Joined: Nov 2006 Posts: 7 | Diane, thanks for your input. A cancer care team evaluated my case and recommended RT without surgery, and without chemo, in light of two considerations, 1) no "clinically significant" evidence (CT results and palpitation) of nodal involvement, and 2) my job as a teacher. MRI is ordered but not done yet. Likelihood of microscopic N1 is 15-20%, hence RT is also recommended for nodes bilaterally. They make their recommendation, then your H&N specialist explains each possible option in detail, the attending risks and likely benefits. Final choice is not placed on the patient's shoulders without clear recommendation. Instead, they communicate which options are preferred and why, e.g., which will have what side effects and the likely prognoses of each. For example, in my case, definitive RT (RT alone) was recommended over surgical excision of primary/flap reconstruction + bilateral node excision (and whatever post-surgical treatment is recommended, e.g., RT yes or no)--but the latter was said to have about the expected effectiveness for longterm disease control. They told me to evaluate and indicate my own preferences with respect to morbidities between RT and partial glossectomy/reconstruction. The cancer team have their own considered view of these issues. They debated whether post-surgical swallowing and speech issues was a slightly greater concern in my case, due to my job (I'm a teacher) than RT's xerostomia, dental issues, and bone necrosis. So, no, they are not allowing me to formally "decide" in the sense they will do anything I think best for me. Instead they are giving me as much informed consent as possible, and MAY accept different treatment preferences I may have based on all these matters in my case. If anyone is aware of similar decision circumstances (equally good/equally bad) and what the final considerations were, and what the morbidity outcomes were in those cases, obviously I would greatly love to hear about them before Tuesday. I'm leaning in the direction of definitive RT because the cancer team recommend that option in my case, and the Clinical Guidelines for base of tongue SCC, T1-2/N0-1/M0, do so as well.
PaulT
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#40497 11-11-2006 10:38 AM | Joined: Jul 2006 Posts: 446 "OCF Canuck" Platinum Member (300+ posts) | "OCF Canuck" Platinum Member (300+ posts) Joined: Jul 2006 Posts: 446 | Paul, I too wish you much luck in this decision. Having been through both the surgical option (17 hours; 50% of the mandible removed, rebuilt with fibula, titanium and forearm flap) and the RT, if faced with the option of one or the other would take the surgery again over the RT. Overall, the recovery was much easier.
I think what solidified my decision to go with precautionary RT and surgery ( and yes, Surgery alone was an option) was a comment made by my dental oncologist during the early evaluation phases of my treatment.
He commented that he'd come to really hate the sneaky nature of SCC in his 25 years in practice. He said that it seemed to him that the best successes had been the cases where they threw almost everything in their treatment arsenal at it on the first go-round.
It hit a nerve...I don't want to hae a round two if I can avoid it. That of course remains to be seen, but I really feel that I made the right choice for me. Wayne
SCC left mandible TIVN0M0 40% of jaw removed, rebuilt using fibula, titanium and tissue from forearm.June 06. 30 IMRT Aug.-Oct. 06
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#40498 11-13-2006 04:22 AM | Joined: Aug 2005 Posts: 158 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Aug 2005 Posts: 158 | Paul, it looks like I am getting in just under the wire here. Like you, I was a T2N0M0, though borderline T3.
My local physicians all recommended radiation and chemo therapy. That recommendation was also given at second opinion by the Moffit Cancer Center team that evaluated me. With you being a teacher, and I am an insurance agent, we both spend much of the day talking. Thus the consideration not to do surgery, given the same likely results, made a lot of sense to me. I too was given the opportunity to make the decision and chose to follow the recommendations.
I wish you well with whichever decision you chose. Stay around here, there is a wealth of knowledge to tap into.
Bill
No love, no friendship can cross the path of our destiny without leaving some mark on it forever. - Francois Mauriac
Thank you for leaving your mark.
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#40499 11-13-2006 11:46 AM | Joined: Jul 2005 Posts: 624 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jul 2005 Posts: 624 | Hi Paul --
Just back from a trip -- I think you are correct to go with chemoradiotherapy, rough as it may be, as the long-term side effects of base-of-tongue surgery can be significant (permanent speech and swallowing difficulties). So much so that at Hopkins and at Sloan-Kettering, two of the top 3 CCCs in USA, they do not do it. Note, this is base of tongue (BOT) cancer, not oral (mobile, outer) tongue cancer, in which case prior surgery is usually done, at least at Hopkins.
My husband had a tonsillar, base of tongue and two nodes SCC d'xd in June 2005, got the tumor board recommendions from Hopkins for chemoradiation and ditto from Sloan as a 2nd opinion, he went with Hopkins and is now over 1 year out and doing very well, no swallowing problems now (they have you go to a therapist pre and post-treatment) and never had any speec issues. His medical onc says they get excellent results with chemoradiation only for BOT, "no need for the surgery".
By the way, my husband's cancer was human papilloma virus positive (many BOT cancers are) so you may wish to ask about this. These seem to be more sensitive to radiation and also, less apt to recur. He was a never-smoker.
Gail
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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