[VDC]

It has been 3.5 years since I last visited this support group. I was "fortunate" (or so we thought) and the cancer was gone. Then in July a recurrence....yeah..... hard to handle. I know I should be very very thankful that it is early stage again,but somehow my emotions are having a hard time catching up with that reality. REALLY having a hard time.



After the new diagnosis, I searched and was accepted into a clinical trial for HER2+ disease. There was an earlier trial with women who had more advanced disease and at 2 years they remained cancer free. Two years isn't much follow up in my book. I would like to see longer follow up to know if this approach works. BUT of the 22 women who took part in that trial, two had recurrences. One didn't complete the vaccination series, and the other had a recurrence in the opposite breast. I don't consider either of those true recurrence in the trial.



Now back to the trial I am part of. THIS trial is for very early disease and it entails four vaccinations each two weeks apart, followed by surgery etc. So, this is the first time it has been given BEFORE surgery. In the earlier trial it was after women had completed the standard of care. In this trial it is BEFORE standard of care in earlier stage disease.



Since it hasn't been used before surgery before I want to have another MRI prior to surgery. I really think it is necessary to see if the cancer has grown, stayed the same or possibly shrunk. Does this seem unreasonable?



The entire point of this trial is the immune system. A portion of the immune system (I think the neutrophils?) are bonded to four proteins found in HER2 disease. Then those neutrophils take those proteins and "teach" the immune system to recognize those proteins as bad boys and go after them! In the earlier trial, the immunity was still there after two years and none of the women who completed the vaccination series had a recurrence in that breast. My question is this: am I being unreasonable for wanting to have an MRI prior to surgery? I REALLY want to know (as much as possible) if the cancer has grown, stayed stable or possibly shrunk. My insurance is refusing and the trial doesn't have an MRI written into the protocol and won't cover it.



Just as an FYI, my cancer was ONLY visible by MRI. It didn't show up by mammography or ultrasound.


Thoughts?

Thank you,