Chemo delayed for clinical trial

@kayanonsen, I'm sorry that this happened to you. It seems like typical consent protocols about the clinical trial were not followed or that the communication between team members delayed their asking you if you wanted to take part in the clinical trial. It must been upsetting to have your treatment delayed because of this.

If I recall, your diagnosis is ductal cancer in situ (DCIS) and invasive ductal carcinoma, correct? You are having chemotherapy first, then surgery, right?

Hi, yes that is right, and thanks for your understanding. I really felt it was an awful experience, as though I don't matter, as though I am "female patient, 67, left breast cancer" which is how I'm referred to on the patient portal.... so I'm still waiting for an appointment to start chemo, then lumpectomy, then radiation.
Kay

@kayanonsen
I am sorry about what happened to you. One should never be enrolled in a clinical trial without their consent. The clinical trial should be very carefully explained to you (pros/cons, how it compares vs your current treatment plan, etc.) and you should be allowed to think about it and ask questions.
Clinics usually send an email or text message asking you to evaluate your last visit with them. If you receive one, please use it as a means to give feedback, be clear on what you did not like and include how you would rather like it to be handled.
I wish you ease in your treatment and a complete recovery.

I had a situation with my MRI-guided biopsy last year in which they did not check to be sure the MRI computer was working after a 2 day hospital wide computer outage. They put the IV in, got me on the table and into the machine and I laid there waiting in great pain for a long time before they admitted that the computer wasn't working. Whole process had to be repeated days later. I ended up phoning Patient Relations to personally share my experience and dissatisfaction. I felt much more empowered by doing that and I felt seen and heard as a result of the conversation. Now I ask if computers are working every time I go for an MRI.

Eku has it right; you have to get the facts. most importantly, how will the trial be beneficial. Even though in my case, I didn't even hear out the plan for the trial.

In 2014, I was diagnosed with invasive ductal carcinoma, +++. I was offered a clinical trial and before the oncologist could finish, I said. "I want what works, not a placebo." In my mind, trials are unproven treatments that need additional data and sometimes you randomly draw the control group, which would mean placebo. The next day, with the support of my surgeon, I got a new oncologist. I never did find out what the trial was all about. But the treatment plan that I got from the new oncologist worked great.

thank you .. this is so helpful. I got so many books out of the library on breast cancer and mostly unhelpful. What I really crave is other women's experience. I have no idea what to expect. And when something like this happens, I don't know if my reactions are legitimate. The oncologist really treated me like a difficult customer service call. She said I shouldn't this and I shouldn't that. And I thought, maybe she's right. But I now I know I have a right to ask any and all information I want about my treatment. I still haven't started chemo with them yet and my first appointment with them was November 8th. And I've been told about 6 different reasons for the delay until finally she called me and told me they were looking for clinical trials to put me in. I really want to get started with my treatment and so does my family. Very frustration. Thanks so much for posting, its very reassuring.

Wow what an awful experience. The pain is awful but so is the feeling that we don't matter. Anyway, thank you so much for letting me know. The things you don't even think to ask, or think you need to ask! But I will certainly ask from now on. I can't believe that happened to you. So gruesome!

Thank you! We are all easing a path for others who, sadly, will surely follow.