I just got off the one with the wife of another base of tongue cancer survivor in our village. Her husband is doing great, but his cousin who had the beat the same cancer in 2000 was just diagnosed with early stage kidney cancer. The cousin's doctor in Florida said they are seeing a link between folks who have had oral cancer treatment and kidney cancer. This is the first I've heard or read anything about this...has anyone seen anything proven on this? Brian, particularly interested to hear your thoughts

I have read that not all HPV oropharynx cancers react positively, some behaving more aggressively like tobacco related, and believe it's type B, there is type A too, and for some unknown reason, some show an increased rate of failure after 5 years in distant areas, while tobacco related cancers level off after 2 years. These distant failure rates are not the typical areas associated with metastesses, and believe bone, and kidney were mentioned. There were articles on this, and may have been posted here previously. If I find any articles, I'll post here.

Here is one article, "Risk Varies in HPV positive Oropharynx Cancer"

http://www.medscape.com/viewarticle/779682

Paul, that looks as though it could be an interesting piece, but unfortunately the site is only open to docs and the like. At least when I click on it.

You may have to register, and can open it, and no doc lol. It's not the one I was specifically speaking about, but does offer insight on HPV metastases. It's not the only article I've seen. Maybe another sight offers it that doesn't need registering.

Another article that mentions different distant failure rates based on low or high risk HPV.

http://jco.ascopubs.org/content/31/5/520.full

http://oralcancernews.org/wp/five-genetic-subgroups-revealed-in-head-and-neck-tumor-analysis/

Second primary cancers, are not uncommon in oral cancer patents particularly in those that come from tobacco. While in theory they can occur anywhere, they tend to be in the aero digestive tract and the brain. But the overall numbers of them are relatively small. I have never heard of one to the kidney in 14 years except for a good friend of mine that had multiple metastasis (not second primaries) to most of his major organs as he fought, using extreme measures, to stay alive to see his daughter graduate from college (He made it).

Aside from the question, just a comment about how far some people will go and what they will endure.

The 2 years of treatments at the end of his run were brutal. There was nothing that he would not do to make that ceremony. He developed liver cancer and had surgery to remove the impacted part. He developed lung cancer and had radio frequency abalation repeatedly to burn the areas that were appearing on his scans. He developed kidney cancer and had that kidney removed. He finally developed a brain cancer and that was the end. He was a cop, street tough, and when it came to this cancer battle he proved to be the toughest man I have ever known. I would have caved very early in the process�

You may be able to sign up to that site as a new user, for free, to get some limited access. I would try.

Here is an interesting new study regarding the differences recurrences between HPV positive, and HPV negative Oropharyngeal SCCC or OPSCC. They do mention atypical distant metastases sites in HPV positive, like liver, when I thought I read kidneys once, and have been looking for. I could, probably, had it mixed up with the liver.

http://www.news-medical.net/news/20...-positive-and-HPV-negative-patients.aspx

I was at this meeting with Dr. Gillison and others from the OCF Science board. There were some really great presentations, and I had a chance to spend discussion time with lots of doctors to help us understand everything from our future funding projects that seemed important, to catching up on some trials we are already co sponsors of (RTOG1016).

This paper really showed the dominance of HPV in the oropharynx compared to other etiologies. It also showed that survival rates in OPSCC cases are actually pretty good even when distant mets are involved, only 35 people out of the study group of 285 with distant mets didn't make the 5 year mark. If you looked back a data we were presenting before HPV became such a player, this is a huge improvement in overall survival.

The study was also important in this take away, that we have always historically seen the highest percentage of distant met develop very early after primary treatment. Patients that were going to essentially fail primary treatment usually do so very quickly, usually in under a year ( mean 7 months), but in HPV patients it can be much longer, at just under two years, so we really have to monitor them more closely for a longer period of time to be sure that we are catching things as early as possible. In both groups (HPV+ and -) the locations for the distant mets were essentially unchanged with the majority of them to the lungs and the bone. HPV patients, when distant mets occurred, had more sites that were impacted and more sites at the same time as well. So what this means is that the multiple and varied DM sites, which can present as distal localized pain, indicates that we may need to be more aggressive in working up our suspicions for metastatic disease, and that imaging such as PET/CT scans may be warranted even several years after treatment, also that with HPV patients we should not dismiss without exploration what would normally be unspecified pain in what were previously thought to be unlikely metastasis sites.

But for me the impact of this lecture was not about the DM sites being more varied. (Given that most mets went to where they always go in both HPV+ and - patients, I thought the distant met issue was minor and the lecture poorly named.) It was about monitoring more closely after NED for at least two years, especially for HPV+ patients, and that we are doing so much better at long term survival in all patients who have a development of continued disease. I thought the news was a positive note, and for someone that has been watching this for 15 years indicative of how far we have come.

Ana, to address you question, I don't have specifics to point at other than to say these distant mets do occur. The real question in my mind is the terminology. Are these really metastasis of the original disease, which would mean essentially incomplete primary treatment because they were too small to be found at the time the patient was declared NED, or are the secondary primaries. I've had a secondary primary early on, and it was a brand new disease not a continuation of my old one. Given these data are drawn from hospitals with widely varying protocols for treatment, there is bias in much of this. It could be that some protocols are just not as effective as others, and really do not get everything (that is an over simplification but the idea is correct), But all cancers have the potential to metastasis and oral cancers actually for the most part must do so to kill. They involve finally going to a vital organ most often the lungs and there is where they bring people to the end of their journey. So while kidney is not seen as often as the lungs, it can happen anywhere. Also remember that besides primary treatment there is so much that can be involved in whether or not a patient will develop a DM, not the least of which is that their genetic make up and body's immune ability is not uniform among all people.

[quote]So what this means is that the multiple and varied DM sites, which can present as distal localized pain, indicates that we may need to be more aggressive in working up our suspicions for metastatic disease, and that imaging such as PET/CT scans may be warranted even several years after treatment, also that with HPV patients we should not dismiss without exploration what would normally be unspecified pain in what were previously thought to be unlikely metastasis sites. [/quote]
Brian,
Is anything published or available on the post tx followups? How often, what type of scoping, scans, frequency? I'm certain many here would find it highly relevant.

Thanks
Don

The problem is a lack of consensus between the big institutions. This study though will stimulate (NCCN perhaps) a group to develop some standardization to the guidelines.

This is still dependent on doctors continuing to be involved with their patients long after they are found NED. That is a real problem, as their general attitude is that at NED they have done their job and you need to get on with your life. This is why the issue of a patient noticing pain in any organ region, even very distal to the original disease, and bringing it to their doctor's attention is very important. Problematically, too many of them will not be up on the literature, and may be dismissive.

This is where advocacy for yourself becomes extremely important and what we find for patients through OCF and see that they are aware of also becomes important. The OCF RSS news feed gets all these kinds of things, and once you've done this dance, it is a good thing to keep up on what the current thinking is rather than depend on an over worked and booked oncologist to know everything.