I was diagnosed on 2/22/08 with metastatic SCC after resection of a 4 cm cancerous lymph node in my right neck. My local surgeon thought it was a lymph node "gone bad" after my tonsils were removed in 11/07. I first noticed a lump in neck just prior to the holidays. The primary tumor was in my right tonsil and was 8mm and was completely removed on 3/5/08. It tested positive on the p16 stain. There are also two additional, sub-centimeter cancerous nodes in the right side of my neck.

I am being treated at Stanford and need to decide between two optins: 1. Induction chemo (some combination of cisplatin, taxotere, and 5FU- (TPF)) followed by Cisplatin/XRT or, 2. Ciplatin/XRT alone. My Onclogist and my Radiation Oncologist are divided on which course of treatment they would choose for themselves. My case is also going before the UCSF tumor board this week for review and recommendation. I am scheduled to get fitted with a mask for XRT Tuesday and then it will take them 1 1/2 - 2 weeks to plan my treatment. That seems like a long time but they say they need that time to properly plan the procedure. I had the silver fillings in my lower teeth replaced with enamel yesterday and am ready to begin. With either choice I make I will receive the radiation.

MD Anderson would recommend the induction therapy followed by the concurrent cisplatin/xrt. This is based on conversations my sister in law, a lung cancer doctor, has had with former colleagues at MD Anderson. I also know that Johns Hopkins would not do the induction therapy but would recommend Cisplatin/XRT.

Apparently there is a considerable current controversy within the Oncological community regarding the correct therapy. Some argue that delaying radiation negatively affects the cure rate. Some say the data clearly indicates that the induction therapy controls distant metastisis. I wish there was more compelling data and case studies. One day there will be.

Has anyone else done some variant of the TPF treatment?

Also, has anyone delved deeper into what it means to have a p16+ test? I guess that just because you get p16+ test doesn't mean you have HPV. While I don't believe it will impact my eminent decision, is there any value in determining if you are really HPV positive? If so has anyone else tried to determine what specific strains? I want to beat this cancer and then work to get rid of the virus that caused it.

I am 43 years old. This cancer needs to die. My Oncologist told me I would live to see my grandkids. My oldest child is 14 so I hope that means many years into the future.

I am a new cancer patient and this is my first posting to this site. Any help and ideas would be appreciated.

Thanks,
Frank

Frank, welcome to the board, and sorry you qualify to join our little community. That being said, do avail yourself of the wealth of resources available here. Be sure to go to the Read This First post, which serves as a guide to the information available.

Being a native of Northern California, a Stanford alum, and with many friends associated with UCSF, I can say unequivocally that you are in great hands. If you dig through the postings, you will see much pro and con over various treatment modalities, all of which can point to statistical evidence as to their efficacy. You will also see increasing volumes on HPV and debate over its role.

I was in your shoes last year at this time. As you can see from the signature, I had neck dissection, IMRT and concurrent Cisplatin chemotherapy. My particular course of treatment was deemed an aggressive treatment protocol with curative intent. I chose the most aggressive course they wanted to pursue, because, like you, I wanted this thing dead. I am 52, so have about a decade on you, but same principal applies.

As others will tell you, this is a very individual decision. However, I would wait and see what the tumor board at UCSF suggests. You had the surgery to remove the tumor just a week or so ago, and apparently at least one lymph node removed before that. (Go to the profile tool and put the details of your diagnosis and treatment in your signature -- this helps everyone see what you are dealing with, and helps to tailor our input).

They generally do not like to start radiation earlier than 4 weeks after surgery, so there is time yet. Carefully listen to what they recommend, aske the upsides and downsides of each course, and make a decision based upon what is most important to you. You obviously want to kill the disease, but if efficacy is the same and one course offers less morbidity in side effects, that may be the one you want to pursue.

There are no guarantees with treatment, and it really is highly individualized. Keep bringing your questions here and someone will have the answers. Others are more versed in HPV impact than I, so I will defer to them.

Welcome, and best of luck. Keep the questions coming!

I was torn between Stanford and UCSF because I am geographically located exactly in the middle. I ended up at UCSF, where I was treated by Dr. Jeanne Quivey a well published radiation oncologist specializing in head & neck patients, especially in IMRT. Did you ask them why IMRT is not an option? (although you have 3 world class CCC's all agreeing about the XRT - I would still ask, since it can preserve a lot more tissue, particularly your salivary and thyroid function). You may not be a viable candidate for IMRT, however many here, even Brian, did not have IMRT and are doing well today. Chemo protocols have changed a lot since I was treated. I only had Cisplatin. Many people are getting a "cocktail" these days with Erbitux or F5U and Cisplatin (as they have proposed for you). Like Jeff said they typically like to start RT about three weeks or so after surgery to give the wounds a chance to heal.

If it were me I would hit it with every weapon you have, especially since this is a regional metastesis. "Distant" metastesis would be a situation where a new tumor has shown up in the lungs, liver, kidneys or brain (caused by the primary). They can't detect tumors smaller than 2mm so it may have been there. I would imagine that the tonsil cancer was the primary -was your first surgery done at Stanford as well?

Whether your cancer was caused by HPV or not will not change the treatment protocol but apparently there is data so suggest that HPV induced cancers are more treatable and have a higher survival rate.

What was your original staging and why didn't you have RT/ct after surgery to begin with?

Sorry it was late last night and I didn't look at your name with the stating. T1N2BM(X??) is not that common, especially the T1 N2B combination.

I would also ask why XRT is being recommended vs IMRT and if your cancer is HPV related it may very well be more treatable with less harsh treatment alternatives. My RO has told me that if he knew what he does now about HPV he MAY not have treated me as aggressively as he did. That also opens up it's own can of worms so I'll leave it at that.

Gary, as usual is right on the button. Gary -- from your description, you must be pretty close to my old stomping grounds of Redwood City and San Carlos. Spent 38 great years there!

I took the most aggressive treatment option offered, induction chemo (cisplatin,doxtaxel and 5FU for three cycles of three weeks each and then 7 weeks of IMRT and weekly carboplatin. My tumor was about 3 inches long on the left side of the neck and the left tonsil infected with cancer. I am now 4 months post treatment with no surgery (other then the tonsil being removed) and no tumor. My team recommeded this course and am glad I chose it. The chioce is yours alone, so do what is best for you! Good luck in your WAR. Bob

My husband had the exact treatment described by Bob above (and at Hopkins). He did not need surgery on any lymph nodes following treatment. He was treated at Hopkins and he was given the induction chemo for several reasons- tumor had spread locally beyond his tonsil, to possibly control for future distant metastisis, etc. He is doing quite well (brutal treatment for him) and has no signs of cancer.

Sorry for the confusion folks. I am new to all of this and thought XRT was short for all radiation. The radiation that will be done on me is IMRT. I am currently leaning towards concurrent cisplatin/IMRT but am awaiting a recommendation from UCSF's tumor board tomorrow. I was fitted for the mask and did the simulation today. Fun! Also, I will add my statistics to my signature as soon as I figure out what they should look like.

What have any of you heard about doing less rigorous treatments for HPV positive?

Thanks for your thoughts, help, suggestions, and responses. Please keep them coming.

Thanks,
Frank Williams
T1, N2B
4 cm lymph node removed 2/22/08
8 mm primary tumor removed from right tonsil 3/5/08
Two additional cancerous, sub cm nodes still in right side of neck.

There are no current recommendations at NCCN to treat HPV positive lesion patients any differently than anyone else. Some institutions are passing on the neck dissection. We'll know in about 5 years if they are doing the right thing or not.

Frank,

Moffitt told me before they knew I tested + for HPV that due to everything they did know about me that they didn't recommend a ND and wanted to get started on the chemo/rad ASAP. About 1 year post Tx my RO told me that had he known I was HPV + when he treated me and I assume what he had learned about HPV in the interim, that he may not have treated me as aggressively as he did. I still haven't had the chance to follow up on that comment but I'm not sure I would want to be the ginnea pig until studies have conclusively proven a different less aggressive Tx alternative for certain HPV+ patients. I just see far too many variables in this equation to be able for science to one day do that and besides I'm alive and pretty much side effect free and that would be the goal of any alternative Tx plan.

Stick with what's proven and you won't be looking over your shoulders forever.