Participatory medicine! #MedX RT @stales: Breast Cancer Community: Unique Opportunity 4 Patients & Advocates! bcsmcommunity.org/unique-opportu… #bcsm
— Liza Bernstein (@itsthebunk) April 11, 2013
Others chimed in, including:
RT @chemobrainfog: Thanks @jrgralow for asking for input BEFORE study is designed. ow.ly/jYIMB ==== "patients as partners" #bcsm
— Alicia C. Staley (@stales) April 11, 2013
Thnx! MT @boobcancerninja: I did it! MT @seattlecca: Pts help design clinical trial answering 5 Qs via #BCSM [SURVEY] ow.ly/jYVnJ
— Julie Gralow (@jrgralow) April 11, 2013
I've excerpted the introduction from that post here:
Unique Opportunity for Patients and Advocates!
By DrAttai On April 11, 2013 · 13 Comments
Here is a unique opportunity for patients to have their voices heard, BEFORE a clinical trial gets approved. Many thanks to Dr. Julie Gralow (@jrgralow) from the University of Washington for asking for advice from our community.
Patient Survey Regarding Follow-up of Early Stage Breast Cancer
We are seeking patient input through this survey to help in planning a national clinical trial designed to determine how to optimally screen for breast cancer recurrence.For details about the clinical trial being planned, please read the rest of the post. It's important and fascinating.
Just as important and fascinating is the ensuing dialogue, much of which was sparked by the last (and only open-ended) question in the brief and easy Patient Survey. I saved my answer to that question, and am reproducing it here:
"Last Question: This study would allow us to study many other breast cancer “survivorship” questions during long-term follow-up. What are the main cancer and/or treatment-related problems that you think we should consider including in this study? (for example, this might include difficulty concentrating/”chemobrain”, menopausal symptoms, numbness/tingling, depression/anxiety, pain, weight gain, sexuality/body image, fear of cancer returning)."
"All the items mentioned in the above question should be included.
I would be most interested in seeing how you would approach studying these additional important issues so as to get actionable data.
People who survive early stage BC after receiving adjuvant treatment (I have had three primaries myself, so I know from experience) end up with a host of long term side effects, from chemobrain/cancerbrain to higher instances of anxiety/depression/"ptsd"-symptoms, etc. I know you know this too.
Another aspect of long-term survival is the psychological impact of being watched so carefully by one's medical team (pro = more likely to find a recurrence or relapse sooner; con - heightened anxieties, etc due to fear of recurrence). Being followed every few months with blood tests could both give a sense of reassurance and heighten the anxieties. This also contributes to the isolation many survivors experience. You have to keep going back for follow-up visits, keep wondering if IT has returned, while most everyone else you know continues with their usual routine.... This is what you just have to learn to live with.
Meanwhile, now that I am in the position of basically having to rely on hoping I don't get any symptoms, it is terribly anxiety-producing. My oncology office happens to order tumor markers during long-term follow up, so if mine happen to go up, I will be one of those few women who will have an additional possible clue as to whether I have developed mets. I also understand there isn't always a 1-1 correlation between marker levels and the development of mets. More uncertainty!
This is a great idea for a study. I just hope there will be other more reliable pathways to detecting Early Stage Mets (for example, non-increased-radiation studies: I'm tapped out for PET and CAT scans, per my oncologist, due to the numerous scans/mammos, etc I've already had in my 19 yrs of 3 BC primaries. We will only use those in an emergency at this point.). We need better tools!
I appreciate your thoughtfulness and intelligence in reaching out to us in these preliminary stages of your trial. My name is Liza Bernstein and I can be reached via Twitter at @itsthebunk. I'd be happy to contribute further to your thinking process during this development process and answer any questions you might have, if you were so inclined.
Not surprisingly, some of my concerns are echoed in the comments from other survivors, and the great thing is that the researchers are addressing them as they come up.
Surely this type of dialogue will help researchers design even better and more relevant studies. It certainly empowers survivors to join in the process. The ensuing dialogue gives me hope that our ideas and concerns will be seriously considered.
This is an example of what collaborative medicine, fueled and enabled by social media and technology, could look like.