I recently had a discussion with a woman who is dealing with metastatic breast cancer (mBC), which is also known as advanced breast cancer. One of the things that we discussed was her interest in participating in a clinical trial. So before her latest visit to her oncologist, I provided her with a list of sites to assist in locating one should she care to do some research on her own. She did, in fact, raise the issue with her oncologist and that oncologist indicated that she had already looked into this prior to this patient’s appointment and didn’t find anything and sent her away.
My desire is to make more people aware of the fact that there is a large group of mBC patients who are being left behind in the opportunities to receive treatment for their cancers. Barbara Jacoby
This just didn’t feel right to me, especially since this patient received this diagnosis after having been given a “no evidence of disease” result earlier this year. So I decided that I would to do some research to help find some answers but when I started reviewing the four sites that I had provided to her:
- Metastatic Breast Cancer Alliance Trial Search
- Metastatic Breast Cancer Network Clinical Trials Finder
- National Cancer Institute
I soon realized that I was in over my head. And when I read this part of her latest message after her visit with her oncologist, I felt the desperation in her words as the treatment that she is currently receiving apparently is not working:
” I am exhausted and really feel the need and desire to move on and move forward with life and have some normalcy in my life. I just sold my home and living with family since I was going to undergo surgery and now I have another hiccup on the road and God willing I can overcome this as well and move on. This is becoming an even more challenging time and I kindly and humbly ask for some direction, as you can.”
I have read so many articles about those conducting clinical trials not being able to find participants. And a particular article that I came across just days later after receiving this woman’s update is now speaking about certain groups of patients who are noticeably absent from clinical trials which adversely affects the outcome data and potentially the ability to receive an approval about the new treatment being tested.
This has led me to seek answers to help those who are dealing with advanced cancer diagnoses but are being written off by medical professionals when their situation is outside of that doctor’s own expertise. But as I don’t have the answers at this moment, I think that this is just one more issue that needs to be addressed during Breast Cancer Awareness Month.
I know that not every oncologist is willing to take the time and effort needed to work with a patient who is searching for additional treatment possibilities like a clinical trial. With all of the new regulations placed on the medical community, more practices are being run like any other business and medical practitioners simply do not have the time or motivation to do what would be required to shepherd a patient through something like a clinical trial. When a doctor is focused on feeding the family, paying off school loans, meeting quotas set by their medical groups, etc., it becomes a bit easier to understand why such a decision might be made, especially when they have relegated a patient to the list of others where they may have determined that there is no hope for viable treatment based upon a quick assessment based upon the info that they have at hand.
My desire is to make more people aware of the fact that there is a large group of mBC patients who are being left behind in the opportunities to receive treatment for their cancers. We need to do some figuring out about how to address this matter when a patient has an oncologist who, for whatever reason, is not willing to honor a patient’s desire to participate in a clinical trial or even to suggest such an option as a further course of treatment. If we don’t, we may never be able to secure the information that is needed to get treatments approved from clinical trials after all of the time and effort and resources that have been spent to find these very solutions that mBC patients are so desperately seeking.
Barbara Jacoby is an award winning blogger that has contributed her writings to multiple online publications that have touched readers worldwide.