[quote=Brian Hill]Paul, respectfully, many of us have had lots of long term issues as a result of our treatments, and continue to, 14 years out like myself. I bitch about them in private, but I know full and well that if I did not do everything I could as a very advanced stage 4, bilaterally metastasized late stage find, I would not be writing this to you today. I had to take a poison pill that just about killed me to destroy the thing that was trying to kill me. Welcome to cancer treatment.

If you are sure there is a direct cause and effect in what has happened to you, including your many recurrences, then you have a legal case you should pursue. I do not think that it is a trait of CCC's, to be overly aggressive as a group, nor particularly cavalier in their understanding of the consequences of what they do to us. For sure it can seem like a big machine, and I certainly felt like the "person" Brian Hill was not being treated, but my disease was. But I'm going with the end justifies the means.

Your story, and many others that were particularly difficult, is common to institutions and patients of all sizes and skill sets, and stages of disease. I don't think it is fair to brand all CCC's with the light of being aggressive. I think that institutions both large and small try to follow the NCCN guidelines. As good as those are, since they are a compilation of what the big CCC are all doing and works the best, not every patient responds the same way to them. Guarantees in cancer treatment are not part in parcel of treatment. Assurances that you will not be one of the people negatively impacted by the treatments are not given, as none of us is biologically uniform to the next person, hence the informed consents that we all sign. I am giving you both my personal opinion, and that of the foundation. I also have an obligation to state what the peer reviewed publications find, and they find better outcomes at the bigger CCC's. Does that mean that every patient, at every CCC, has a better outcome? No. But the data says that their chances of a better outcome statistically are better.
[/quote]

Brian, your words hit so close to home with me. My second opinion was MD Anderson. I knew going into it that it would be tough and I jumped in knowing there was little time to really make the informed decision I wanted to. I have had that nice consent form thrown at me for many years now and that finger wagging that I fully knew of the risks yet did it anyway. I was even told the cancer was killed just as they said. When the most senior radiation oncologists were gathered in one room for my last visit there I knew they meant business. Instead they literally chucked me out and encouraged me to seek out alternative treatments outside of mainstream medicine.

I believe there is an underlying assumption that if you get me through this you will help me forever while I am alive. I have found that the research cancer centers do not do this very well and I accept it is a funding issue. I just didn't think there would be no options available from the experts that got me to this point in life. Cancer aftercare is nearly nonexistent although many of us could certainly do a lot to help further the cause. I even proposed a model using only physical therapists and nurse practitioners and with a $750,000 startup grant from Livestrong. It was laughed at because there was no revenue stream. Focus has always been on treatment first prevention second. I am still hoping we find something to bust the "one size fits all" paradigm as well as establishment of aftercare centers for cancer survivors. I will push for the last two till the day I die. I will do all I can for OCF because I truly believe the organization and specifically YOU will take every opportunity to further this cause as well. Thank you for what you have done and what you will do!