HI ALL,

I have another of my one million questions ! I saw my radiologist on fri ( i really liked him) And he is unsure if I need Radiation Being Just a stage I with no node involement. Feels as though maybe shouldnt use that "ACE CARD" in case later on. However has said if it is the way to go it would be best to go with brachytherapy and expalined it all . He is calling a freind and Colegue at Sloan Kettering ..one of the heads down there in the head and neck department to discuss my case. he says ultimatley my decision and I have to say I am torn. If the Dr at sloan kettering says Not Nessacary .Do I just not do it and consider that as to be my second opinion ? my surgeon didnt feel strong about radiation either. I have an Appt @ Dana Farber in Boston in a couple of weeks but should I go if I am waiting for answers from A Dr at sloan Kettering ? ughhhh And do you feel if they say "they got it all" and No node involemnet really warrants radiation. ?

Sharlee,
The first question I have to ask is do you have a coordinated medical team and has this opinion been the result of a tumor board meeting, in other words, a consensus of the team. Shopping individual opinions from different specialists may not yield accurate results - surgeons cut, RO's radiate, etc. Ultimately though, it is your decision on what tools in the arsenal you will use to fight this. Is the appointment at Dana Farber for radiation? What was their RO's take on the risk/benefit?

Stage 1 with no node involvement is a tough call. You are wise to get a second and maybe even third opinion. Radiation is no walk in the park.

Sharlee...this has been discussed lots on this forum. You can do a search and find it discussed, by me, and by Wilckdds (Jerry Wilck) and others....both sides of the issue. Of course, no other person's experience can guide you in your decision. Each person's case is different: location of tumor, degree of differentiation, margins, length of time it has been growing, node involvement. I had a T2N0M0 tumor, with clear margins, and no node involvement after a neck dissection. The location of my tumor....on the upper maxilla and hard palate.....led my surgeon to decide against radiation. He feels that this location can be removed with a high degree of certainty. I, too, am a little nervous about not having had radiation, and I even asked for it at one time, just to be sure, but they said that they felt that I didn't need it. (of course, they followed that with the same old song, about saving it for later in case i need it......hmmmm I thought I was NOT going to need it....)

It's a hard call, and you can NOT do it yourself without professional advice that you trust. Keep us posted.

Sharlee,

Have you been tested for HPV? Everything else being equal, I wonder if testing HPV+ would swing the decision one way or the other in light of conclusions coming from Hopkins's knowledge of HPV+ SCC? Just a thought.

I dont have a team , they are all individual at Dana Farber I will be seeing a surgeon and radiologist . Why a surgeon at this point but I guess that is the team thing. It is a tough call they are saying they hate to use it and it is possible I realy dont need it and blah blah blah..however I may benifit. SO myself I feel I am getting mixed messages. And as Far as HPV i ask relentlessly about it and it seems no one wants to discuss it with me they just blow it off or sweep it under the rug. David could you send me more info or a link on Hopkins Knowledge of HPV and Scc ? Thanks so much

Sharlee - must be very tough since it doesn't sound like your drs are advising you one way or another... I am one of those folks that did not have RT - my dr. at MDACC was pretty definitive when he said they did not believe I needed it, and gave me the reasons why. So I decided to trust him on it, even though I have often wondered if it would have been "safer". I have discussed this with Jerry Wilck and a couple of other people on this forum who also did not have RT - and I think we all share some uneasiness about not having it, although I myself am also thankful I did not have to go through it after reading of the tough time others have had. I do have a lot of trust in my physicians, though, and decided that I would go with their decision, given their experience and expertise in the topic.

I go next week for my next F/U visit to MDACC and though it's technically only 10 months since surgery, they are considering this my 1 year appt and doing quite a few tests, so I am keeping my fingers crossed that they were right and I am still cancer free.

Dear Sharlee -
I have to add our 2 cents worth to your decision making, although like the others mentioned, your physicians have to be your primary authorities. My husband has had 3 oral cancers, but radiation was not pushed for any, by surgeons or radiologists. His were T1s with N0 with neck dissection following first surgery in 2002. He has since had 2 more pop up, all in cheek and gum area, all removed surgically, with clear margins and well-differentiated. He's lost 3 teeth in the processes and had his jaw shaved to be sure cancer wasn't in bone. Now, we have no idea if he had rads after first diagnosis, that he would have had the recurrences, but his radiologist's opinion was that another oral cancer would have occured, regardless. His latest scans and tests have all been clear and good, so we are praying that's it. He has/had leukoplakia, so we think something (like metal in his fillings/crowns?) MAY have triggered a reaction in the leukoplakia, but we may never know that for sure. We do know that most of his gold/alloy crowns/fillings are now gone.
Hope this helps you. If you have any questions, just email me. Warmly, JaneP

Sharlee,
It is more of an academic point about HPV since you have already been Dx'd with H&N cancer. Some speculation and early information would suggest that persons having a cancer caused by it have a higher cure rate, but it won't change your treatment protocol one iota.

You will get mixed messages and it's a tough decision to make.

You must remember that we all respond differently to treatment and also that BOT cancers attack tough tissue and tend to be more aggressive than say, tonsil cancers (which attack lymph tissue - that's what tonsils are made of). Some here would also suggest an "all or nothing" approach, in other words add adjunctive chemo and radiation but these are both toxic and can have serious side effects. That's why discussing "risk and benefit" is of such vital importance. Say, for instance, that you have an 80% chance of non-recurrance (or a complete response to treatment) and the addition of radiation and chemo will increase your odds of 5 year survival by 5% - these are the kinds of questions and data you must be asking and seeking and as Ginny and Colleen said, you will have to trust your doctors some what on steering you toward a choice that you are comfortable with and following your gut. I would still seek a consensus opinion from an MO, RO and surgeon.

Another thing to consider is that they will be following you very closely for the first couple of years when your risk of recurrance is the highest. I saw all three doctors every 6 weeks during the 1st year. Although I had radiation and chemo only, my primary doctor, for routine followup, is a head and neck surgeon (who recommended against surgery by the way).

I am a 4 year survivor and I still wonder whether I made the right choice(s). I think that we all struggle with that.

None of us here are doctors, we can really only give you more questions to ask.

Colleen - did your RO concur with the surgeon?

Thanks all for your info. so BOT cancers would be like of the tongue ? I guess one of my main questions still is ...Do I keep the Appt with Dana farber or just take this phone consult my RO is havin as my sec opinion ? I mean I know it is a Personal choice , but how would some of you feel ? And I think in my decision I want to know what the G is . I mean I know what the G means I dont know what MINE was. I hear the poorly diifrerentiated is somtimes "Worse" (for a lack of a better word). So that is somthing I need to know.

Sharlee,

As Ginny and August have told you, many of us have spent a great deal of time discussing this very issue.

It is a tough decision and one which we all second guess from time to time. If I never have a recurrence, then I obviously made the right decision. If I do have one, does that mean that I wouldn't have, if I had had radiation?

Unfortunately there is no one right answer.

Jerry