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?

I meant to say: do the radical surgery alone, and not do RT afterward if the tested nodes are negative.

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.

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

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.

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

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.

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

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

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

I feel the need to weigh in:
My husband was diagnosed with stage III, T2N1M0 tonsillar cancer, with involvement of the floor of mouth, on August 14, 2002. He is a general superintendent with a large construction firm, and is known for his mouth!
He was understandably very concerned about his future, if his voice was affected.
After much consideration, he decided to have RAD and chemo, with no surgery.
I'm glad to say that he is cancer free.
Please.....consider, along with all options, the affect the treatment will have on you in the long run. There are many treatments available, and some "feel" right to the patient.
Love you,
Mandi

Thanks to everyone for all of this deeply appreciated feedback. Although chemo was not recommended to be added to the RT by the board (case conference) in my case, I will now discuss this possibility tomorrow. I'm strongly inclined now to request RT+Chemo. I will also ask to have the tumor tested for HPV. Here goes. Again, much, much thanks for this invaluable help.

Paul,

I can only tell you from my experience that my doctors did not recommend surgery for tongue base cancer. I did have a partial glossectomy for a left lateral tumor, with no radiation/chemo. Four months later, a new tumor on my tongue base appeared. I went thru 33 radiation + chemo. I am still recovering from the effects of that treatment. I am able to speak, and able to eat, so I am thankful for that.

Good Luck in your decision! I know it's not easy!
Joyce

Radiologist re-iterated today that chemo not recommended for me due to N-0 and tumor size and location (1.5-2.0cm, left side base of tongue, right on the crest of the oral tongue). However, he added that the salivary gland relocation surgery in a week will allow further evaluation of primary tumor and nodes, so, chemo addition can be revisited then. Currently, the plan is RT alone. What worries me most is the Jan18->Sept25th delay between onset of noticable symptoms and eventual diagnosis--staging is not an exact science. It is for those reasons that adding chemo seemed prudent to me, despite the huge risks of chemo ("it will greatly exacerbate the RT side effects, and has numerous serious morbidity risks including nerve damage, including high end hearing loss, 1% mortality, and so on"). But I agreed today to RT alone with chance to reconsider that before Nov 27th start of RT.

Paul,

I assume the chemo you refer to above is Cisplatin? I had Cisplatin and other than the HF hearing loss which one source says is permanent and my CO says lets wait and see and the nausea, I didn't experience any other side effects. I was told by my CO that Cisplatin would enhance the Rad's ability to kill the cancer by 30% so I opted to do it and would make the same decission today knowing what I went through for the 30%.

Since Paul is Stage II (as best as anyone can tell as of now), adding chemo would probably not lower his odds of recurrence as much as for someone who was Stage IV. At least this is how my medical oncologist explained it to me (I am a Stage II who had chemo with rad but it was optional). However, even for Stage II it could decrease chances of recurrence by 5-8 % according to my MO (using the, apparently commonly used, rule of thumb that it decreases chances for later stages by somewhere between 10 and 16% and as a Stage II you have half the chance of recurrence as those in later stages, so the % decrease should also be halved).

The hearing loss and neuropathy are genuine concerns for cisplatin but be aware that the 1% mortality is probably less than that if you go into treatment young and in reasonably good health otherwise.

I was told by the MO who recommended I have chemo, who was at one of the top CCCs in the country, that it is protocol to give chemo to Stage IIs in Europe but not in the States. He preferred the European model and recommended it, espeically to someone like me who was young and in good health otherwise. I trusted his recommendation and don't have any regrets about having it though there's no question it made the whole treatment much harder.

Nelie

The way it was explained to me was; while you are young and good health the idea is to throw the everything at it the 1st time for cure. Nothing is fool proof with this disease, so the best bet is to go with what you are comfortable with and pray for the best.

I would like to show all of the above information to my radiologist and H&N specialist on Friday. Would this be OK with each contributer? Thank goodness for this support group. I think in my case (age and otherwise good health) adjunctive chemo might be worth the slight increase in safety margin. Its a tough call, obviously. Having input from those in my situation and those who have had RT+chemo is so, so helpful, and generous of you. Thank you all. For the benefit of others, I'll update this thread with what treatment is chosen and why (Friday meeting this week is to sign informed consent forms for the treatment plan, I presume).