Jun 12, 2012 10:28 AM, edited Jun 16, 2012 02:31 PM by jenrio
---------------------- Cruel statistics alert. Don't read on if you can't handle it
---------------------- This is a clinical trial/research thread. If you are not interested in clinical trial/research or advocating for clinical trial/research, if you are only interested in being glad or sad or frightened, then you may not want to keep reading
----------------- read at your own risk and don't shoot the messenger
----------------- This post is really for early stagers. Stage IVers please don't read.
A lot of early stager patients are told that they are "cured" (based on 5 year recurrence free statistics). But BC is too sneaky for that!
Notice the life expectancy of the recurred patients: they survived for an average of 17.9 months after being diagnosed for a second time.
Breast cancer has no cure/survivors, ladies, sorry to pop your pinkwashed bubble. The chemos you are on are mostly 20,30 years old. The hormone therapies you are on are 10-30 years old as well. Herceptin is 10+ years old. All the best treatment since Herceptin extends life as measured in months, not years, much less decades. So survival improvement since then would probably not be far off from the quoted stats.
So you have two choices. A. Be glad you are alive and live your own life. Your glass is 75% full. Congratulations! You don't need to lift your talented fingers for the stage IVers who traditionally went to clinical trials to prove the best chemos/Herceptin/Hormonals and allowed these best treatment to be tested and given for early stagers like yourself. Very few of them survived to see the glass half-full today, BTW.
---------------- Following is actually some alternative, possibly depressing actions suggested. If you hate action, you are not interested in clinical trials, or anything that remotely might require acknowledgement of a dark cloud in your perfectly sunny sky, don't read on...
B. get off your survivor ass to work for the real CURE. Prevention is an expensive deadend that took 30 years to get to this. Support metavivor or metastatic breast cancer research and join clinical trials (like the neoadjuvant ispy-2 clinical trial for newly diagnosed, or metastasis prevention trials for medium stagers or donate your tumor samples or check clinicaltrial.gov). If you have one of the rare tumor types, work to find each other and a researcher who's interested in focusing/tracking your particular tumor type. From rare cases, there could be rare insights and great advances. Every year 200k women are dxed with BC, how many of them join neoadjuvant clinical trials? Not that many. So spread the word about ispy-2. Minimal commitment, faster development of drugs, but the information needs to be out there, pinged to the top of every forum. Every newly dxed BC patient should have the opportunity to learn about these clinical trials.
Donate to your local university biology/medicine department to hire a graduate student or two. Thousands of people, graduate students and teachers are working on varying part of the million-piece puzzle, called cancer. They fail every day, but one day the pieces will come together and there will be a cure. For that day, donate money or just buy them some free food or attend their seminars and learn from them. Tell them the little pieces they are working on is important and a lot of people care.
Try earmark your donation to go straight to scientists/graduate students or specific research.
If you think it's too much trouble, add your name to a petition and beg the government.
Dx 8/29/2011, IDC, 2cm, Grade 3, 1/1 nodes, ER+/PR+, HER2-