The Importance of Doctor Communication for the Metastatic Breast Cancer Patient
Vital Options International presents Advocacy in Action: Metastatic Breast Cancer, bringing together the influential leaders of the cancer advocacy community to address core issues that impact metastatic breast cancer patients today.
Joining Selma Schimmel as co-moderators are Elyse Spatz Caplan, Director of Programs & Partnerships at Living Beyond Breast Cancer, Shirley Mertz, Board Member, Metastatic Breast Cancer Network, Maria Wetzel, a research advocate who works with the National Breast Cancer Coalition and Musa Mayer, an advanced breast cancer advocate who runs the website, AdvancedBC.org.
Advocacy in Action at the 34th Annual CTRC-AACR San Antonio Breast Cancer Symposium was made possible by support from:
VIDEO TRANSCRIPT:
Selma Schimmel, Founder & CEO, Vital Options International:
There’s many of us that will live with cancer and have to coexist with this disease, and the idea that we can give a voice and now faces to the issues behind living with metastatic breast cancer is the goal of Advocacy In Action.
How do we communicate with patients who have metastatic disease? The role of doctor-patient communication and how important it is that a physician communicates effectively and also encourages their patients to seek additional information. And maybe even if it means losing a patient from that setting, if we know that we can take benefit from getting a patient seen at another center or through another colleague and it’s not a control issue here, that the only person that really matters is the patient.
Musa Mayer, Advanced Breast Cancer Advocate, AdvancedBC.org
With the information that Elyse and I gleaned from this survey that we did together a number of years ago, another survey was mounted that looked at some of the same issues worldwide. Well, it wasn’t entirely worldwide but it was 13 different countries and it was nearly 1400 women in all of these countries and without exception, in every country there was some variability. Women wanted to know, they wanted information; information was rated as a really critical component. This is what I do. This is my mission as an advocate, is to act as a translator between the emerging research and the daily choices that people are asked to make in the clinic and what their physicians are saying to help patients get a sort of fundamental understanding of their specific disease and the kinds of choices and the kinds of treatments for which are targeted, hopefully, toward that disease. And to learn how to be proactive in their care, and to ask the kinds of questions that will really allow them to have, to approach their treatment decisions in an informed way. And to have expectations of their health care team that are appropriate, which often means looking to other sources for the fundamental education. I don’t think, in the 10 or 15 minutes that most patients have with their oncologists that they can really expect a full education on their disease, but I’ve seen hundreds, maybe thousands of patients learn how to, or family members, learn how to educate themselves on the basics of the situation and the basics of their treatment options. So I know it can be done.
Shirley Mertz, Board Member, Metastatic Breast Cancer Network:
In the metastatic setting, this is not a sprint, it is a marathon. In initial diagnosis I was seeing my doctor every 6 weeks and I still see my doctor at least every 3 months. So you are dealing with a person who not only is contributing to your quality of life and your well-being, long-term survival, you have to be able to relate to that person. And you look… active listening on the part of the doctor- Does the doctor care about your pain, as Musa mentioned. Does the doctor care about your anxiety level? Does the doctor care about how well you sleep? In addition to, the treatment selection?
I think the doctor-patient relationship is really crucial. And if patients don’t feel that they’re being listened to, they don’t feel they can communicate their concerns or if they are in a particular cultural group where they don’t feel that doctor understands their particular needs because of values that their culture holds, then they do need to look for someone else. In my upbringing, I was always taught that doctors were like God and so the thought of changing a doctor was like ‘oh my gosh, this is someone who knows everything and you’re now saying you don’t want them to treat you anymore.’ But you have to get over that and so I think this relationship is one of the most important you will ever have in the time that you have.
Maria Wetzel, Breast Cancer Research Advocate, National Breast Cancer Coalition:
One thing is, I think, first of all, finding the right oncologist, especially for metastatic disease, but not only metastatic, even early breast cancer, is to find a good fit.
And the difference between metastatic and early- early, your relationship with that physician will become less over the years, the longer that you are out. Whereas for metastatic disease, you see this person, well like I said, for the rest of your life. And so you have to build up a relationship of trust.
Also, I think physicians have to have a better understanding of how much their patients want to know. I mean, some patients do not want to know much at all and they would like to be told ‘I really think this is the best treatment for you.’ For me, I’d rather have a partnership and an appreciation for what I do know. And there are a lot of people that do know a lot, especially where there are so many sources on the Internet of valuable information, accurate information. And one thing that I don’t think is discussed enough is what we would call risk-benefit ratio. And talking about the percentage of people in your particular situation that there is even a chance of it happening. And these are some of the side effects, approximately how long you’ll… are you going to have horrible diarrhea for 2 days out of the treatment period or is this something that is going to last for the rest of your life? Neuropathy, hand-foot syndrome… So some of these, and sometimes it’s a toss up. And also, a choice of this, what enters in, and this goes to subpopulations, those of us who live in a rural situation, where we have to travel to get treatment, a lot of our treatment decisions are based purely on that; and access to clinical trials has been pointed out. It becomes, not only too much time but too expensive- if you have to stay in a motel, if you have to travel 5 hours or 6 hours of fly some place it really affects treatment choice.
END OF VIDEO