Hello to all - I have been reading your boards for a few days, and find them to be extremely informative and supportive. This is my first time posting.

My father was diagnosed with t1n2bmo squamous cell with a tonsil primary two weeks ago -- he is getting ready to begin treatment at an excellent cancer center. I am confused because I am getting so much information and ultimately it seems to me as though there is no clear treatment path with this diagnosis...surgery, radiation and chemo were presented as options. The main question seems to be what to do first, as all are on the table.

I have read that surgery can make things worse, in a way, and even spur the micro cancer cells to grow faster. Have also heard that radiation plus chemo prior to surgery is better -- then again, have read that radiation+chemo (in that order) is best of all. It's confusing.

He has a very small primary tumor, but it has spread to neck nodes and is palpable in 3+ and appears to be growing quickly.

If any of you have any experience with something similar, I would appreciate your thoughts.

Thanks so much,
Bee

Welcome, Bee. I agree that the tremendous amount of information available on this site can be confusing at first. Prefacing this with the fact that every case is different, I had a later stage tumor in my mouth and involved nodes. I had rather aggressive surgery first, followed by radation and concurrent chemo. That was four years ago and I am fine, and have been for a long time. There are similar stories of people who had just radiation and chemo. In my case, given a choice, I wanted the tumor and enlarged nodes OUT. I figured, on a very simple level, that any cells not removed by the surgery would be mopped up by the rad and chemo, which seems to be how it worked in my case. It is felt that the best recommendations come from a panel of experts who discuss the particular case - a surgeon, a radiation oncologist, and a chemo oncologist. I hope this helps a bit. I am sure you will receive many more responses. Bottom line, I think the most important thing is to begin treatment as soon as possible.

Bee, I'm sorry to read about your father. All the information you get right after being diagnosed can be very overwhelming. There are a lot of people here , though, willing to answer questions. I have found this place to be a wonderful resource in navigating the battle against this nasty disease.

But first of all if you are at a comprehensive cancer center, the doctors there can answer these questions much better than we can here, we're not doctors. Still, I'll give your questions a shot. My impression is that surgery is not done first if it could cause quality of life effects such as problems speaking or swallowing (such as if the tumor is on the base of tingue or very large) and if the radiation oncologists believe there is a good chance that radiation (usually combined with chemo at the same time which is used to make the radiation more effective) can get the cancer all by itself.

On the other hand, if the tumor is small and the surgery is not likely to cause permanent quality of life related problems, they may recommend surgery first followed (in fairly short order--it is important not to have a long delay) by raidation and chemo together (this is the route I went but I was stage II and for me there was a chance that the surgery was all I would have to have).

I hope this helps a little. I'm sure you'll get lots of other responses here too.

Nelie

You are rightly confused. There are guidelines established for different levels of disease by a large group of comprehensive cancer centers. Many hospitals outside these centers have their own protocols, and then you have the constantly changing research results that are tossed into the mix almost weekly. All this yeild different treatments for different people.

Since there is node involvement, radiation, likely in the form of IMRT is probably in the cards for your father. The best results show radiation being used with concurrent chemo, different drugs based on where you are being treated, and further, whether they qualify as a clinical trial site. Just using one example MDACC, at recent tumor boards there for patients with similar disease states to what you describe, show them leaning towards radiation and chemo first with selective neck dissections done afterwards. But were you at another institution you might get a very different plan. When it comes to treatments, they are as individual as the patients. Your profile only says USA and you do not mention where he is being treated. Once associated with a major ccc, and having gone through a proper tumor board, with complete work ups including scans for distant mets, I would be inclined to follow their recommendations. When you approach a group as geographically diverse as those here, and from treatment facilities including private smaller community hospitals to the biggest ccc's, you will get a variety of opinions, none which are absolutes. Here is the link to the page on the OCF website that has the NCCN guidelines for treatment as of 2006. http://www.oralcancerfoundation.org/treatment/guidelines.htm

Brian,

Thank you so much for adding the most recent treatment guidelines to the web site. It is reassuring to see the treatment received for my diagnosis is still protocol, and my physician is taking the conservative appoach in my follow up care.

Sincerely,
Lisa

Bee, Welcome to the board. Just wanted to share with you some hope, my husband was diagnosed very similar to your father in May 2000, and today is doing great. It was a difficult journey through the treatment but well worth it. One day at a time was how we got through it.

Hi All - Thank you so much for your thoughtful information. My fater will be at Mayo, and has decided to bump up surgery from March to later this week. My concern is whether this is the best first step. If the doctors think so, and this is what my father wants to do, I am certainly not going to argue -- I am just wondering what that means as I understood radiation/chemo is usually the first plan of attack. Thanks so much to all of you.

I should amend my previous comment -- now that I have had a better chance to review the treatment guidelines posted earlier in more detail I understand the surgery as next step. Thanks again.

Bee and all - It is often helpful to see if your insurance carrier has a nursing support program in place that can assist in handling the deluge of information and navigating insurance issues. Investigate this opportunity by simply calling to your insurers member or customer service. Ask that representative to be transferred to case management or care management.

If your employer is self-insured than call to human resources and ask if they have a disease management program in place. This works for almost all serious diagnoses as disease management and case/care management programs have been rapidly expanding as sponsored by employers or insurance carriers.

These services can really help with the footwork and information gathering processes. I know from companies that I have run that we ALWAYS had our nursing staff connect patients with oral cancers to OCF and other fabulous cancer support programs as part of their overall program of self care.

Bee --

My husband was diagnosed with SCC Stage IV, right tonsil, base of tongue and at least two lymph nodes (on right side). He had surgery first -- but only removal of the primary tumor, the tonsil, essentially down to connective tissue. The ENT surgeon would not touch the cancer which had spread into the base of tongue (BOT) because of the potential for serious after-surgery problems with swallowing and speech. Surgical margins were negative except at boundary with BOT. This healed pretty quickly, and he was then ready for the next step. From then, it was combined chemotherapy and radiation, 33 treatments of radiation (tomoTherapy IMRT) and 7 weekly treatments of chemo (carboplatin). This was after review of his case and consensus of tumor board at the CCC where he was treated (Hopkins) and appears to be a pretty standard approach -- we had gone up to Sloan-Kettering for 2nd opinion and they recommended almost exactly the same protocol. (He had no surgery after the chemoradiation, not being recommended by his RO or MO, but it is done when residual disease is found or suspected).

You have come to a great resource for help -- both of you get educated and don't fear asking questions of your doctors!

Gail