MarvB,

One of the country’s top chef’s in the country is in Chicago, Grant Achatz, who had stage 4 squamous cell carcinoma of the tongue about 10 years ago, which his doctors suggested surgery, and possibly others, for his course of treatment, which is nothing unusual. But, this Chef did not want to lose his taste or anything else, so he chose chemoradiation, with approval of his doctors in Chicago, which treatment was unusual. He is cancer free for a number of years.

You can read more about Grant Achatz on-line, and has a book, or two, which I haven’t read, one about his journey. There are many articles on-line, including this on wikipedia.

https://en.m.wikipedia.org/wiki/Grant_Achatz

I hope this helps in your investigation

Paul, Thank you for the quick reply. Since I posted my question on here, I've seen other boards where people have had the radiation/chemo treatment and are doing well. The more I hear success stories, the more sure I am that I'll take that option. I hope your doing well now and continue to do well. This disease has made me look at a lot of things differently. It's made me rebuild a few bridges I burned and changed many of the things that are important to me. Also, it showed me that people are so supportive and caring. If I get through this I won't be the same person. Thanks again

Marv,

Keep in mind everybody is different. What works for one person may not work for another. Each treatment has side-effects, from minor to severe. Some side effects deminison overtime and others continue and can get worse.

The radiation/chemo treatment is often used to treat HPV+ cancer in the throat area. From what I recall, surgery in this area is more difficult and causes more problems.

In my case, radiation caused me many problems and continues to do so. If I had a “do-over” option, I would have skipped the radiation (it was optional). However, had I done so, I may not be here today.

Have you been to the dentist yet? Someone familiar with oral cancer patients? You may need to have some problematic teeth removed before radiation begins. My dentist recommended removing my wisdom teeth. They will not start RT until the healing is complete (1-2 weeks). Most of us used flouride dental trays before, during and after RT. Also, you should have blood work to check your thyroid levels and testosterone.

Hi Susan, Yes, both places i went to said I would need to have teeth removed. They've been doing a LOT of blood work on me. I could hardly eat or drink because of pain from the cancer. I lost 13 pounds in two weeks and got so dehydrated my kidneys started to shut down. They finally gave me something for pain. I'm gaining weight now and my kidney function is back to normal. The place that wants to do radiation/chemo asked if my biopsy was tested for HPV. They said if the cancer was HPV related, it usually responds better to treatment. The place that wants to do surgery/radiation had the biopsy and said they didn't test it for HPV because it doesn't make any difference in the success or treatment. They also told me that was the only cure was surgery/radiation.They said radiation/chemo never works except to maybe shrink the tumor. I get such conflicting information between the two and their both cancer treatment centers. The one that said only surgery works and that being HPV related is unimportant is one of the top 12 cancer centers in the nation yet I'm beginning to question what they tell me. Because I get such conflicting information from two supposedly reputable cancer centers, I ask here to get real life info from people who have been through it. Thanks Again

Hi MarvB,

HPV related head and neck cancer is more specific for the oropharynx, which is different from oral or oral tongue cancer, so much is that they don’t normally do HPV testing in other areas for head and neck cancer, and only for oropharynx cancer. If other areas, small chance, it is HPV related, there is no postive benefit in other areas as seen with HPV oropharyngeal cancer. On a small scale, some oropharyngeal cancers may be a metastesss to the oral tongue, maybe another rarity.

It’s true HPV related (oropharyngeal) cancer treatment is the same HPV related or not, but in “clinical trials” there can be a difference in treatments.

I’m not sure of your cancer, but I was thinking it was oral tongue? Maybe you can clarify this with your doctors, if you want.

It’s true, you have difficult decisions to make, and hopefully you come to a sound decision.

I hope this helps.

Hi Paul, Thanks for the information. I do have cancer of the tongue. It's squamous cell. An oncologist at one cancer center I went said it makes a lot of difference if the cancer is HPV related on my tongue. The oncologist at the other cancer center said it doesn't make any difference. Both have a lot of years experience and both are well respected. I get different stories from each of them which surprises me. I thought that this was science.

MarvB,

You’ll find you can get three different opinions from three different doctors!

Most follow the NCCN suggested guidelines for head and neck cancer, if you want to look there for work-up exams, and treatments.

Here are the 2016 NCCN Guidelines. I believe there is 2017 Guidelines, but I can’t print it out. You can join the site, and get the current guidelines if you want.

https://oralcancerfoundation.org/wp-content/uploads/2016/09/head-and-neck.pdf

As far a HPV related head and neck cancer, it’s the only positive prognostic measure benefit seen if its HPV related oropharyngeal cancer. If they want, and think it’s HPV related, they can test the biopsy samples for HPV. I believe they keep the biopsy samples for a number of years, so they still can test it. That’s what testing they do for oropharyngeal cancer as part of the initial work-up.

It does make a difference if the cancer is HPV related, prognasticaly, found in the oropharynx, and not seen elsewhere in a number of reports, but I read ONE report a few years ago of a postive benefit for HPV head and neck cancer found elsewhere.

I hope this helps

Wow. This is news to me too. Mine was strictly on the tongue, and I mean tongue as we laymen think of it, not as doctors do, and it was HPV+. Now I hear that all that treatment stuff may or may not have mattered and doctors were telling me I'm gonna be fine because of the good prognosis when that may not be the case? Sheesh. No wonder some of my supposedly good doctors seem so flaky lately. (And no, there was no spread elsewhere, not even lymph nodes, though it did recur in the same area.)

Gah.

You have all my sympathies, for sure, Marv. It's a crazy ride no matter what answers you get.

From what I remember thru discussions with HPV+ patients/info gained from Brian Hills expertise, and posts here, HPV+ OC is found 95-99% of the time happening in the Oropharyngeal area. Its very rare for HPV+ OC to be found in any other area like the front or sides of the tongue. Basically the oropharyngeal area consists of pretty much anything in the back on the mouth, the area past the molars which includes the base of the tongue/tonsil area . For base of tongue OC, its not able to be seen without using scopes or other tests to examine that area making it more difficult to diagnose. Plus just like someone who was diagnosed with OC from smoking, many patients have only very mild symptoms that often are not recognized to be a sign of having cancer. As a patient, I would not think a bit of a sore throat was anything serious or an earache could be a sign of cancer. Kristens HPV+ OC is very unusual with her tumors location. Off the top of my head, I cant think of anyone else who had their tumor located outside of the oropharyngeal area.

Thru donations to our small nonprofit (with a worldwide presence) , OCF helps to fund HPV research right from the start. We have, thru Brians forward thinking, helped fund research thru our donations to a young research doc, Maura Gillison's studies. Dr Gillison has been working on HPV for over 15 years and has brought out most info of what we know today about HPV. Even with so much learned about HPV, there is still so much more that is unknown.

As far as I know, at this time regardless of if the tumor is HPV+ or HPV-, treatments still are the same. There have been studies done to see if HPV+ patients can lessen radiation treatments without impacting the patients outcome and odds of having a recurrence. I do not know what the outcome was or if it still is being worked on. Considering its a fairly recent study the long term effects probably wouldnt be available yet. What makes being HPV+ something positive is patients that are HPV+ have less of a chance of having a recurrence. But...(there always has to be a but), if the patient was a smoker that changes everything. Patients who are HPV+ and smoke or are former smokers have the same odds or recurrence as those who had smoking cause their OC. The long term prognosis probably isnt available for this group either. I have known several other patients who have been HPV+ and were nonsmokers but still have had recurrences.

Always remember what works for one may not always work so well for others. For patients who do not have being a medical professional in their background, often have a hard time figuring everything out. All these things can be very confusing to patients and caregivers and thats not even talking about the medical jargon which for most is like a different language. Doctors usually use the guidelines Paul mentioned to determine what the best course of treatment should be. There are so many variables to factor in and of course the "everybody is different" also should be considered when trying to understand how a particular patient should be best treated. The treatment protocols are like big flow charts with a different treatment plans for patients who have different things going on. Along with the treatment guidelines, theres the CCC's tumor board meetings as well. At the tumor board meetings, all the specialists give their input and discuss each case to create an individual treatment plan where all the specialists feel it will be the most beneficial one for each patient. Patients can attend the tumor board meetings and should voice their concerns at that time to help make their treatment plan one that the patient understands and feels is best for them. I know its not easy making these difficult decisions. No matter which path you select we will try our best to help you thru it.

Thanks, Christine, that was very helpful for me! Mine was particularly odd, as it was the atypical painful sore that I found myself first rather than the odd thing a dentist or someone else sees first. (Which is partly why no one expected it to actually BE cancer...) Ah, well, I do enjoy being a medical anomaly ... story of my life. Maybe it helps them find answers for somebody else.

This is a GREAT forum.