The following quotes are from real clinical study participants and cancer survivors.

 
"When it came to changing my lifestyle, most importantly I stopped smoking. When I started treatment I stayed home a lot. If I went out I masked and gloved and protected myself. My immune system was compromised so I needed to be safe. If people came to see me, they washed, masked and gloved before they came to see me. I just tried to continue on my life as best as I could. Now I bicycle, I watch my grandchildren and I garden. I do all I want to do."

Lung Cancer Survivor

"I am here because of research."

Lung Cancer Survivor

"I kept up with all of the information through a journal. I wrote everything I ate, everything I did during the day, what my children were doing and all of my experiences. I made sure to write down shots I needed to get and documented my doctor visits."

Lung Cancer Survivor

"I’m not a victim, I am a decision maker so it’s my choice."

Breast Cancer Survivor

"Sometimes people have a feeling that you’re almost going to be stuck in a study. Their concern is your health and that is first and foremost above their study."

Breast Cancer Survivor

"My lifestyle didn’t change hardly besides going to work a couple of days. Somedays I was just not up to it and missed out on a few things. But most of the time even with the radiation and everything else that I was going through I had very few I was very fortunate I had very few side effects."

Colorectal Cancer Survivor

"I looked what I could realistically expect from the side effects. In other words, are they typically for lack of another word, debilitating type side effects or are they something I can live with? And everybody is different. So you’re going to have to be aware of them and you’re going to have to make sure you've discussed this with your treatment team."

Colorectal Cancer Survivor

Get a spiral notebook. There are a lot of questions a lot of information that you don’t think about until the drive home or until 2 in the morning and you wake up. You need to have a way to inventory all of that, write it down, have it ready for the next visit, the next appointment and really be able to get your questions answered. You know knowledge is power and that’s part of what empowers you to be able to ask the right questions and do the right thing for yourself and for your family.

Colorectal cancer survivor

"At first I thought they were going to experiment with me or something. But, then they broke it down that they were going to do the same radiation treatment, but the study would look at either the whole pelvis or just the prostate to see which one was better."

Clinical study participant

"The things I considered before participating were if my insurance was going to cover it, if I had to take any different medications, and if it was going to take a lot of my time. And, I found out that yes, the insurance covers it, it doesn’t take a lot of time, and I didn’t get any new medications. So I said, yes."

Clinical study participant

“Don’t leave family and friends in the dark, keep them informed.”

Colorectal cancer survivor

“Communication is a large part of what I like to consider your own personal treatment plan.”

Colorectal cancer survivor

“Yes, everyone has an opinion but in my humble opinion as the person going through it, it is your ultimate decision.”

Breast cancer survivor

“There are no silly questions, ever.”

Breast cancer survivor

 

Communication is key

Steven Cates, a clinical study participant and colorectal cancer survivor, recommends communication be central in all that you do.

He recommends the steps to participating in a clinical study are:

  • Sit down and develop and discuss with everyone in your support structure- your friends your family your spouse your employer.
  • This first starts with communication with your treatment team.
  • Get a spiral-bound notebook and write down names and phone numbers. Make sure that if you get a question later on you can write that question down so when you come back for your next appointment you have an opportunity to talk to them you can ask them that question and get that question answered right then and there.
  • Don’t forget to write down all the terms you are hearing and ask your treatment team. Knowing these terms will help with anxiety and understanding your treatment.
  • Figure out what family and friends will be central to your support system. Are they going to be there for you? Who are they? Get their phone numbers and have a plan.