As usual, our family here falls on both sides of the issue. So I would like to offer not a personal observation as before, but an OCF one. Our mission is to see that people get the most current, peer reviewed information possible. That is the basis of making good informed decisions as a patient or caregiver. That is what you find in the main body of the OCF web site; what we know, the good, the bad, and the ugly. Hard facts. The emotional aspects section of the web site goes into the aspects of our common journey that fall outside the hard facts, and to the extent you can, the expert in psycho-oncology at Memorial Sloan Kettering Cancer Center that wrote it, has spoken to the emotional aspects of the experience, in what I believe is a hopeful manner, but not without some grounding in reality.
So this radiation story in question, on the day that the NY Times put it out there, ended up on the main body of the OCF web site in the news section. WHY? Because cancer patients not only need, but want to know more than most patients about their illness. They strive to understand, and no matter what the odds, find factual support that they will be on the side of the numbers that is made up of people ten plus years out and healthy. The want to consider EVERY possibility when it comes to getting treated.
If the web site was only the feel good, positive part of the story, people would not have the needed information to know what questions to ask, and how to sort out the important facts from the fluff. Oral cancer is no walk in the park, the numbers that go along with it are scary by anyone's standards, the treatments are harsh, the emotional turmoil burdensome, and to say it is all stress inducing would be understatement... The fact that there was no site that made all those facts accessible to individuals was part of the vacuum that caused OCF to come into existence. Chance favors the prepared mind. If people only want the feel good, hope springs eternal stuff, there are sites that for better or worse, are built around that premise. Cancer Treatment Centers of America, the organization of hospitals that spends more money on marketing their services than any other treatment centers, only talks about the wins. They NEVER talk about anything else. It brings in patients and revenue, it's good marketing, but does it really make a difference in outcomes? No. Their long term results don't even make the independent studies of who the best institutions in the US are. So the feel good, hope for the best message, has emotional value, but it clearly does not give people the "tools" to be intimately involved in the decisions that abound when you are choosing treatments. doctors, institutions, etc. I HOPE THAT OCF CAN FIND BALANCE BETWEEN BOTH.
More than 40% of the people that get this disease do not make it 5 years. It's a fact. You can bury your head in the sand and pretend it is something different, but you cannot change that number. What you can do, is read the information on staging on our site, understand how it is determined, and come to the conclusions, logically and scientifically, that you are perhaps not likely to be part of that dire number regardless of your stage. You can understand that as a late stage patient, while the statistics may not be in your favor, they are not written in concrete. Here I am, a stage 4 patient, with a 12-20% chance of 2 year survival - out from that diagnosis 11 years now. Clearly there are no absolutes or I would not be here. But gathering the best knowledge I could, I understood, I knew, that I wanted them to throw the kitchen sink of treatments against my disease, and I would do everything that I could to tolerate them, because anything less, would have had dire results. I came to this conclusion, by not wishing it was different, by not hoping for the best, but by learning quickly what I could and making the best decision possible at the time. Add in a bit of luck, and if you are a religious person, a belief that some higher power finds my continued existence to be of value, (or at least amusing to him/her/it), and here I am. Hope is an important emotional component to dealing with the disease, but hope does not improve your survival chances but only your ability to deal with what is, by anyone's call, a tough hand to play.
It was brought to my attention a few months ago by doctors whose opinions I trust, that OCF has avoided talking to 45% of the people that draw the worst hands in this battle. We have no information on this web site about hospice, palliative care, or end of life issues that that 45% of people that come here will HAVE to deal with. We also do not have a forum where this painful subject can be discussed. While these are extremely difficult issues, and need to be discussed in the most sensitive and empathetic manner possible, they do need to be discussed. We will be adding a section to our main site over the next quarter which deals in these issues. We are going to partner with a palliative care organization to see that we get it right. Hopefully it will help those that need to understand options, and the process. Others will never read those pages, nor need the information that they will contain. But to ignore those most in need of our support and candid, useful guidance, would mean that we have not fulfilled our mission completely or well.
Cancer is hell. Being scared is part of the deal, like it or not. Information allows you to make the best decisions possible. Those decisions will improve your odds of coming out the other side of this. Providing unbiased, timely, and correct information is one of OCF's missions. If that is not what you want, then with all the best wishes for your future, you are better off finding solace and support in your faith, family, and hope. We agree that these are important components of getting through it all, but they are not enough by themselves in OCF's opinion. Reality and scientific facts, stated in a tactful and sensitive manner, have to factor in somewhere.
Given the good job that Sheldon does on seeing that the most current news, including that, which like this tragic radiation story, do not tell a positive hopeful story, and those that reflect hope, all end up in the OCF news feed, I feel that if you don't subscribe to it for free, you should in my opinion. Please - before anyone decides to post a story in the forums - at least look there for it first. Then send it to the OCF office and we will put it up in the right place. This is an information organizing issue, not a censorship one, or a desire to avoid telling the sad or negative side of things. Anyone who reads of the battles fought here, and especially those that have been lost, knows that not even the forums (where so much emotional support has been given, and hope for positive outcomes is a common tone expressed), have plenty of sad and scary posts as well. You cannot side step hearing something negative about the cancer experience. It is part of the territory of cancer diagnosis.
