Sharing my experience & Seeking Your Stories About Clinical Trials
Hey everyone, my name is Andrew. Last March, my mother passed away from breast cancer. During the time she was in the hospital my family sought out clinical trails, hoping there was any chance at survival. Unfortunately, we could not find anything. Doctors turned down every hopeful study we had, and online resources were just confusing and overwhelming. That feeling of helplessness is something that still sticks with us today.
Through our reflection, me and my brother decided that this issue is something we want to tackle. We’re interested in building a better platform to find clinical trials.
But first and foremost, we are here to talk to people who’ve gone through similar situations as us. We wish to share support/be supported be people that understand. We want to know your opinions on clinical trials and how the process is for finding them.
Comments
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Andrew, though I have no great answers for you- or even any good ones- I want to extend my sympathy to your family. It is so hard to lose a family member, and it's definitely hard to be shut down when you are searching for every possible solution. I hope you are successful in your search and support of those who are seeking clinical trials. I can imagine it is a difficult and arduous process.
I find that some doctors are more receptive than others at searching and assisting in the search. As much as I hate to say it, I think some doctors are quite prideful and they don't want to turn their patient over to someone else for any reason. I also think some doctors are afraid to give patients "false hope" or to turn them over to someone else, fearing that if it doesn't work- that the patient's family will be angry with the doctor. I have found that most patients and their families would rather try something and have it not work than to not explore every option. Most families will not be angry with the doctor if a trial doesn't work. Sure, there will be disappointment and maybe some natural sadness and fear and a bit of anger- but those are normal emotions.
I think our society has conditioned us to need to be in control and to need success all the time. There are researchers out there willing to take a chance, to try something new, to give people a few hours, days, weeks, months or years of life. At least they are trying. It saddens me when some people are giving everything they have to take a chance and do experiments to help us all, and some doctors are afraid to give it a try.
I do respect a conservative or cautious treatment plan when advised. My breast cancer was early stage and easily treatable. I had a mastectomy of my left breast and did not have to go through radiation OR chemotherapy. I take my anastrazole and I have been fine. My oncologist said "Sure you may find someone who will throw every medication in the book at you, and someone who will say "Let's do it all just in case" but I always want to try the least invasive treatment first and then step up if needed."
I wish all of you who are considering experimental treatments and clinical trials the very best of luck and success with everything you pursue. I extend my sympathies to those who do not receive the results they desire, but thank you for being willing to try. Thank you for being willing to dream, to have hope.
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