[AlaskaAngel]

I don’t like to think that anyone who is polite would not find this site worthwhile. I especially value the thoughts of those who have spent time and effort to dig into the mysteries of cancer and are willing to take on controversial subjects.

Unfortunately, cancer really bites hard, and most of the time no one is around to explain the pieces or answer the confusing questions that we have at the time when we need to know the answers most. We get banged up trying to find a way to intelligently and civilly work our way through it. In my opinion, those who have mets early on are working with a very different clock than most of the rest of us are. They learn fast that survival is much more dependent on realizing internally that the standard guidelines are only a rough attempt to guide treatment that is known not to work very well for many if not most, especially for mets.

This is why some of the most remarkable survivors are still here with us. I’m talking about the women who didn’t follow the guidelines and instead are finding ways to be part of the development of better treatments. Those kinds of choices are hard to make, and there are neither certainty nor impartial professional mentors to cuddle them through it. They have had to “break” their mind and go against the advice of the “national guidelines”, and still live with the natural doubts they might have about doing that. There is little if any support at all for them. They’ve had to get past that. Whether their choices prove to be right or wrong, whether they live 6 months or 30 years, the guidelines are based on research done years ago and as one mentioned, their clock isn’t going to let them live by the guidelines.

If I were one of them, it would be important to try to tell that story so that others can benefit and find their way through it all with less pain than they did. It isn’t just a matter of them by chance beating the odds.

As anyone who has been on this site over the years can verify, a short fuse for me has been the way that the Lost Regiment of HER2’s were treated while the “experts” stampeded by us to offer Herceptin to every newly diagnosed HER2. THERE WERE NO GUIDELINES FOR US, just DEAD SILENCE by the “experts”. You will find a number of the Lost Regiment here took it upon themselves to push themselves and their oncs to start Herceptin anyway. I too believe in civility and would not want anyone who has participated in the discussion to be uncomfortable, especially not someone who has so much to contribute and has contributed so much in the past.

AlaskaAngel