Dear All,

I am fairly new to the board, and I imagine that this topic has been covered, but I need to hear both sides of the radiation issue. I had surgery for SCC of the right maxilla and palate in January. Based on the size of the lesion, (T2)and the length of time we figure that it was present, my surgeon also did a neck dissection. All margins were clear, and all nodes were negative, so he did not recommend radiation or chemo. He said that he feels that he has gotten all of the cancer, and that if I do have a recurrence, then we still will be able to use radiation.

This makes me nervous! I am certainly not anxious to have radiation and all of its side effects, but if it will kill any remaining cancer cells, then I do want it. Why wait until they grow into a tumor?

I am very confused. I love this site, but I am afraid that I will become too fearful if I continue to read the posts, because I am not sure that I have had all the treatment that I should have had.

Also, I have been very hopeful and upbeat, but since reading of so many recurrences, I am beginning to feel discouraged.

I need and want the knowledge from other patients, but I don't want to look for trouble if there is no cause to suspect it.

So.....I would like to know how many people with T1/2, NO, M0 lesions had radiation and how many didn't. Thanks.

August,

I was a T1,N0,M0 and did not have radiation. I did a lot of second guessing of the tumor board's recommendation after finding this board, but 3 years out I am still all clear.

Sincerely,
Lisa

August,

As you know from our private emails, I too, had only surgery. So that others reading your thread will be able to get a sense of how many of us are on the board that have had only surgery, I've decided to add my post.

Like Lisa, I, too, have had many periods of second guessing. This didn't occur until reading the many posts on this subject. After almost 1 1/2 years post surgery, I am comfortable with the treatment protocol that I had and am content with the follow-up care that I am now receiving.

Each of our cases are different and unfortunately, there doesn't appear to be any set protocols for treatment or follow-up care. One of the most compelling reasons that I have read for surgery only in T1N0MO cases, is that in the unfortunate case of a recurrence, the use of radiation is still a possibility. Others will argue that the use of radiation (and chemo) initially, will lower the chances of a recurrence.

There is no doubt that getting cancer sucks and living with the threat of a recurrence sucks, but we somehow have to get to the state of mind where we can go about our daily lives and enjoying life again. There isn't a day that doesn't go by without me thinking about oral cancer. However, as most of the board knows, much of this involvement is related to making my patients and dental colleagues aware of the importance of thorough oral cancer screenings. Hopefull, after I retire, I will be able to spend even more time in the getting the word out that "Early Detection, Saves Lives".

Jerry

August,

I've been on this forum for about 2 1/2 years now and have seen plenty of T2's who had radiation (and plenty of others who didn't). From everything I've read here and on several of the linked sites, it's not a straightforward call, and it depends on many of the specific characteristics of the tumor, not just the stage.

I was 39 and a non smoker when I was diagnosed. I had a partial glossectomy followed by a modified radical neck dissection, and the pathology report showed that the surgeons got clear margins, and that there was no lymph node involvement. However, the report also indicated that the tumor was "poorly differentiated", which meant that it had the potential to grow aggressively. I think it was that fact, along with the fact that there could still be microscopic cancer cells left behind, that caused my tumor board to push strenuously for me to have radiation (which I did). I followed their advice, had many of the nasty side effects (mostly temporary) that go with radiation, and thankfully have not had a recurrence in 17 years.

The thing that concerns me most about your post is that it sounds as though the recommendation not to have radiation is coming from one person -- your surgeon. There are lots of terrific surgeons out there (and some less than terrific), but I think they have a tendency to focus on their own specialty. If you haven't seen a comprehensive head and neck cancer team, I would urge you to get to one for an opinion. They can either support your surgeon's conclusion (which should put some of your fears to rest), or give you sound reasons why perhaps surgery alone wasn't enough.

Cathy

August,

Cathy makes a good point. I neglected to mention that the decision to forgo radiation in my case was made in conjunction with a radiation oncologist.

Jerry

August,

I too was advised by my surgeon not to have radiation. I had a cervical node on my neck removed that was positive for SCC. The surgeon did a bunch of random biopsies in my mouth and removed my tonsils all of which came back negative. As much as I wanted to follow his advice because it was the easiest path for me I knew that the primary cancer must be found. So I continued to ask for tests until it was foind via PET scan. And yes I'm having radiation and chemo now.

Tim Stoj

I know that we can't diagnose each other's carcinomas here, nor can we second-guess the treatment modalities recommended by our various physicians. I asked at the time of my surgery if I shouldn't consider having follow-up treatments after my surgery, and I was told that in the surgeon's opinion, I had nothing to treat. I had clear margins, negative nodes, and a well-differentiated SCC. Perhaps it was the latter that enabled my dr. to make the decision that radiation at this time was not recommended. I know that most of these treatments are dictated by various protocols. I did not have a consultation with a radiation oncologist. I have a local friend in the field. I think that I will ask him to review my records and render an opinion. I'll report back. I am thankful that I didn't have to endure the radiation, but not at the expense of this anxiety over my future.

I need to weigh in also. My husband has had 3 SCC oral cancers (2002, 2005, 2006),starting at age 57 - he is almost 62 now. He never smoked and rarely drinks. He has never had radiation, and this is at the affirmation of 2 separate ENTs, a MO, and his radiation oncologist. I know some would have said that had he had radiation/chemo, at the first SCC, he wouldn't have had the recurrences, however, all indications were that he didn't need it, that each cancer was caught early and completely. I want to reiterate that all were small (T1), well-differentiated, margins all clear, plus following the neck dissection with the first cancer, all nodes were clear. Follow-up scans when he had the recurrence this last time (early May of this year), showed no activity at all, which means that even from the first SCC he had in 2002, nothing remained after surgerical removal of the lesion, to metastasize. And he just had a check-up today at Shands Hospital, and his ENT gave him an all clear. I agree with Jerry in that "each of our cases are different", and "there doesn't appear to be any set of protocols for treatment". Each case has to be weighed on its individual circumstances. I just presented this information as another case history of "radiation or not". Thanks all
JaneP

August,
I am curious. Where were you treated? In what part of Texas do you live? It certainly wouldn't hurt to get a second opinion from a multidisciplinary group at MD Anderson.

Danny G.

August,
welcome to the world of "second guessing" I think it comes with the territory. I don't really have anything to add - everyone has already said what I might have said.

The NCCN guidelines are on the fence, especially depending on what exactly is the area of your tumor. In one case is says to "consider radiation" in another "rt optional", yet in another it shows the decision tree going straight from surgery to "watchful waiting" (standard followup exams).

Gary......thanks for your input. Where could I have access to those guidelines? I wish I were the type who could take my doctor's decisions blindly, but I come from a medical and scientific family, and I have a need to understand the science of what is going on with me.

You'll find the NCCN guidelines in the main part of the OCF site -- http://www.oralcancerfoundation.org/treatment/pdf/head-and-neck.pdf . The main site also has a search function (toward the end of the list of links on the left side of the page).

August,
I'd second everyone who suggested getting a second opinion from a CCC (just to reassure yourself). My understanding is that today you can have your records and slides sent to a CCC and they'll tell you their opinion remotely.

I'm also in Texas and we got treatment at MD Anderson - if you need to know anything about care there, I'll be glad to share our experiences.

I can understand your apprehension. My husband wasn't given chemo - just radiation, and reading the stories here made me wonder why. I asked our surgical oncologist at MDA to explain the decision and she reasurred me by sharing the studies that supported the tumor board's decision to use radiation alone.

Debra

Hello.....Another surgery only here. I was stage II - like you - young (29) and non-smoker/non drinker. Mine was located on the tongue. My surgeon recommended against radiation and I second guessed him for a while and then went to one of the best RO's in the region who treats only H&N and lung cancers (which are all related since H&N easily spreads to the lungs). He agreed 100% with my surgeon in that Radiation was unneccesary in my case. Past of the reason was mine was well differentiated and another factor was my age.

Good luck to you. If you keep second guessing - if for nothing else - at least go see a RO for your own mental anguish. It really does help. You never know what they say. I went thinking that since he was an RO that he'd definitely have me do the rad - but they really do have your best interest in heart when they give you the recommendation. And, short of being able to predict the future - that's the best you can ask for.

Amy

I am a T2N0M0 who had radiation and chemo. I had it because my tumor thad some features to the pathology that indicated a higher risk than average of recurrence according to some research. Actually, the chemo was above and beyond what the NCCN guidelines recommend but I got the recommendation from a medical oncologist at a top CCC and I figured I was going to be feeling bad from the radiation anyway so why not do everything I could to beat the cancer into the ground....

The first treatment recommendation I got, from a local tumor board, was that I didn't need radiation but there was disagreement on that board and, interestingly, it was my ENT/surgeon who strongly pushed for me to have radation, the RO here at the time thought we should watch and wait. That's when I went for a second opinion at a CCC and I'm glad I did because they were quite clear that I needed radiation.

This seems to be a very gray area if you are Stage II and I think it would really help your peace of mind to get that second opinion from the best expert you can find.

Nelie

I have an appointment for tomorrow at M.D.Anderson for a second opinion on the appropriateness of my treatment so far.

I am seriously considering changing my care to MDA, since I have already decided that if I need more surgery, I will have it done there.

I wonder if they would take me as a patient at this point in my treatment..........Right now I just need surveillance.......and confidence.

I am back from my appointments at M.D.Anderson Cancer Center in Houston, where I went for some second opinions. I am happy to say that they concurred with all of my treatment plans so far. They said that, with clear surgical margins and a negative neck dissection, they would not have recommended radiation at this time. They also were impressed with my surgery (done at LSU in Shreveport.) They said that I could not have gotten a better outcome if they had done it. In fact, they were a little amazed that my surgeon was able to do the surgury totally within my mouth, without an external incision. Perhaps I should be thankful that I went where I did for my surgery, since otherwise I might have a facial scar that could have been avoided.

I did get a good checkup, using a fiberoptic viewer to look through my palatal defect, and using a different viewer and some numbing sprays to view down my throat, so I feel better about waiting to see my own surgeon, who had told me that I was doing well and didn't need to be seen for 6 months. (THAT made me nervous!) Now, it's just 2 1/2 months until I see him, but I have had a good checkup to help me to be calm until then.

Of course, going for second opinions AFTER treatment is still not the same. I still was not seen by a team who planned my treatment course before we began, so I feel that my treatment has been a bit scattered.

If any sort of recurrence is discovered down the line, I will need to decide whether or not to transfer my care to MDA. I think, having gone through the doubts that I have, even though I have obviously had good care, I will certainly get a second opinion and will most likely transer my care to Houston. If I have a recurrence, then the treatment will be much more complex, involving most likely radiation and chemo, and I will want to then be in a larger center's system.

I have go give credit to my surgeon. Even though I have had my doubts about some things, he obviously has given me superior surgical care, as evidenced by the comments of every single physician and dentist who has had occasion to look inside my mouth.

Advice for someone else on this board who was trying to decide about going to the larger center or not: I say yes. Certainly you should get an opinion from them, even though it takes a little time and effort. I was tormented by the thought that I might be "missing something" by not having gone to the larger center. I still would have felt more confident if I had started my treatment at the "top of the mountain.'

August,

I'm really glad to hear that the results of the second opinion were so good. It has to be reassuring to find out that you're not looking at any further recommended treatment at this point. Here's hoping that all your future checkups come back clear!

Cathy

Hi,

That's such great news. I know how worried you have been and now that worry should be relieved quite a bit. This confirmation of your surgeon's skills and follow-up plan from a great CCC like MDA, should help you sleep a lot better.

Keep the good news coming and let us know how your check-ups go.

Jerry

Thanks, everybody. And special thanks to you, Jerry, for your special interest and support. This illness can take a normally intelligent, rational, positive person and do funny things to them, can't it?!? I do feel better now. I will stay busy now until time to go back in December, at which time I should get a chest x-ray and some scans.

When I read what some of our friends on this board have endured, I realize how very fortunate I am to have had "only" a maxillectomy to deal with.

On that note...I don't read about many maxillectomies here. Brian, do you recall many posters with scc of the maxilla and hard palate? This surgery, including mine, usually requires an obturator afterward. I would love to "talk" with someone who has experienced this type of surgery.