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2016 San Antonio Breast Cancer Symposium: A Patient Advocate’s Perspective

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Published on December 23, 2016

Each year, experts come together at the San Antonio Breast Cancer Symposium to discuss the latest research developments. Patient advocate Andrea Hutton attended the 2016 conference and she shares her perspective on the meeting highlights with Patient Power's Tamara Lobban-Jones. The author of Bald is Better With Earrings, Andrea also offers her key pieces of advice for breast cancer patients and their loved ones.

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Transcript | 2016 San Antonio Breast Cancer Symposium: A Patient Advocate’s Perspective

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That's how you’ll get care that's most appropriate for you.

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you. 

Tamara Lobban-Jones:

Hi.  I'm Tamara Lobban-Jones, and welcome to Patient Power.  Every year breast cancer experts attend the San Antonio Breast Cancer Symposium to share the latest treatment news and research news, and we're trying to figure out what it all means for patients.  

And joining us today is Andrea Hutton.  Andrea is a breast cancer survivor, patient advocate, an author and also a wellness expert.  And she attended this meeting and has some things to share with us.  Andrea, thank you so much for joining us.  

Andrea Hutton:

It's my pleasure. 

Tamara Lobban-Jones:

So, Andrea, you attended this meeting.  What are some of the highlights that you felt were presented in terms of the research news and treatment news?  Can you share a little bit about that? 

Andrea Hutton:

Absolutely.  So there were some exciting developments this year in San Antonio, as there always are.  In particular, some of the things that were discussed were the pros and cons of extended hormone treatment for ER-positive metastatic breast cancer prevention. 

What we know is that women who have been on tamoxifen (Nolvadex) for three to five years following treatment have had good results in preventing recurrence. And so the question was always, well, if that level of hormone suppression is good, would longer hormone suppression be even better?  And it looks like it is for ER-positive breast cancer and for certain kinds of things.  There are more studies that need to be done, so the question is always, you know, how to balance the risks because there are some.  There are side effects from hormone suppression, and so that was a big part of what was discussed in San Antonio. 

We also had a lot of conversation about CDK inhibitors, which are a very exciting direction for research in terms of treating metastatic disease.  They have had some fantastic results using these treatments in melanoma, and so the hope is that we will be able to use those same kinds of treatments for breast cancer.  And it looks like it is a really exciting direction, and there will be more to come from CDK inhibitors.  

And one of the other things that's really sort of coming online right now has to do with a number of devices that are going to be released that have hair retention quality for women undergoing chemotherapy.  So, you know, we've been hearing about ice caps for years, and there [have] been mixed results in terms of success.  So there have been a series of companies who have been researching the efficacy of using a circulation device that you put on a cold cap, and instead of having ice it is a recirculating of cold liquid in this cap that you sit during your chemotherapy infusions before and after. 

And there was a study presented that shows that there are no risks from doing this except for headaches maybe and, you know, some women can't tolerate the cold of it, but that these devices are working for a lot of women, and they're just getting better and better.  So that was exciting to hear. 

And, you know, it's a very—it's always an encouraging meeting to hear what the new developments are in research.  So there are new things coming online all the time, and those are kind of the highlights. 

One of the other things also were presented about new genetic testing.  So we've been hearing about Oncotype for years now. And now there are some new tests coming online as well that do the same thing but test different genes so that there are a variety of tests now that women can have that will tell their doctors and men and women themselves sort of what the risks are for certain kinds of recurrence and the possibility that certain kinds of treatments will work better for them.  

So that's exciting too so that you can have even more information, and your doctors can have even more information about what kinds of treatments might actually work at a genetic level, which is really exciting. 

Tamara Lobban-Jones:

I can tell by—from everything that you said that you're very engaged and involved.  Do you encourage other patients to also be as involved as you are? 

Andrea Hutton:

Absolutely.  I mean, I came to this as a breast cancer survivor.  I had breast cancer seven years ago, and I'm still undergoing certain kinds of treatment, and it was something that I discovered meant more to me personally to have as much information as I possibly could.  And I have spent the past, you know, several years researching what that means and what the opportunities are for people who want to be advocates as well as women who are undergoing treatment themselves.  And the meetings that I have attended in the past several years are all very welcoming to patients. 

Now, San Antonio Breast Cancer Symposium is very science heavy, so there are programs that train women to be able to better understand some of this information.  Some of these programs are run by the National Breast Cancer Coalition and Young Survival Coalition, and Komen has an advocates and science program, so there are avenues for women to learn the science if they're interested.  

And then there are programs at a lot of other summits and symposiums that are not quite as science heavy, so Young Survival Coalition has summits and symposiums all around the country—there's actually one coming up in March in Oakland—where young women and there we call them co-survivors. So the people who live with them and help them through treatment and surgery and everything, are invited, and those have fantastic information about treatments and wellness and survivorship. 

So there are a lot of opportunities and a lot of webinars as well where you don't have to attend these meetings. You can also receive the slides and presentations from these meetings and newsletters.  But, yeah, I think it's really important for women to advocate for themselves and be as knowledgeable as possible about what's happening so that they're better able to have these conversations with their doctors, because there are treatment options. And the more we know the better we're able to help in our own care. 

Tamara Lobban-Jones:

You mentioned a lot of resources just now.  Is there anything in particular that helped you digest this information?  I think oftentimes patients are overwhelmed.  You know, it's like, oh, that's great, it sounds good, but where do I start? 

Andrea Hutton:

Well, when I was going through this seven years ago, I went online, and I tried to read everything.  Of course, my doctor said, do not do that, and I still encourage women not to do that.  There are some great websites.  In particular, one I recommend is breastcancer.org.  All of the information on breastcancer.org is scientifically accurate and easy to understand and very well presented. 

As far as books go, when I was diagnosed, I was looking for kind of the girlfriend's guide to breast cancer or what to expect when you're expecting for breast cancer. And I couldn't quite find that resource, something that would tell me all the tips and tricks I needed to get through, choosing a surgeon and all of my treatments and side effects and what I could do to help myself. 

And so I ended up writing that book, and it was published last year, and it is called “Bald Is Better With Earrings, a Survivor's Guide to Getting Through Breast Cancer.”  And at that time and now, I think it's really important to have kind of a bedside guide to all the things that you experience.  And there are other books out there as well, but I do recommend being really careful about what you find online.  Young Survival Coalition is a great resource.  As I said, breastcancer.org is a great resource.  Dr. Susan Love's website as well is a really good resource for women.  So they're out there.  You just have to be careful, because there is also a lot of misinformation out there. 

Tamara Lobban-Jones:

Right, and absolutely.  Your book, which is quite—well reviewed online, you know, and I think the overarching message is, you know, the book really dispelling some of the fears that women have or breast cancer patients have after the diagnosis. 

What is the key piece of advice that you would give?  I know there's probably several pieces, but what do you feel is the key piece of advice that you would give other breast cancer patients and perhaps their care partners as well? 

Andrea Hutton:

So I think one of the most important things is to not panic.  First of all, there are so many women living with this disease right now, and we are getting better and better at treating it, and the options out there are quite numerous.  And even though getting this diagnosis is absolutely devastating when you first hear it, I think one of the most important things is to just take a deep breath and don't panic, because there's a lot of support out there.  

And then after that it's important to find that support, whether it's informational or in support groups or with your caregiver or doctor, and hospitals also have all kinds of support programs so that you can educate yourself and feel a little bit more empowered about having this happen to you.  Because one of the things that happens is you get sucked in—I call it the medical vortex.  You know, you get this diagnosis, and then all of a sudden your entire life become about breast cancer for a certain amount of time, and it's important to be able to participate in that experience as a knowledgeable patient even though it can be really overwhelming. 

And I'll say one more thing, that it's also important to ask for help.  I mean, we are so sort of inundated with this message of being the strong breast cancer survivor and who can walk 39 miles in two days, and we forget that when you are diagnosed with cancer you are then undergoing treatment and surgery. And it is really debilitating, and you need help.  And so it's important to kind of remember that it's okay to ask for help.  It's okay to feel sad or scared or sick and tired.  That is—that is acceptable, and it's hard for breast cancer patients to remember that, because that's not the message they receive. 

 

Tamara Lobban-Jones:

Absolutely.  In writing your book, I know that you also reached out to your healthcare team and other experts as well to ask various questions and different things like that.  Do you feel like those conversations really helped you to know what the right questions are to ask? 

Andrea Hutton:

Absolutely.  I mean, the more, the more you reach out to whether it's your medical provider or your caregiver and sort of share what your concerns are the more willing those people are to engage with you.  They don't know what you need unless you ask for it, so it's important to sort of say, okay, I'm afraid of this side effect, or have you heard about this, or I read this online, you know, is this right or wrong information?

So, yes, I think it's really important to feel comfortable reaching out to your medical team as well.  And if you're not comfortable with them, then it might be time to seek another medical opinion, because one of the most important things is to feel comfortable with your doctor.  And so if you feel that your doctor isn't taking the time to answer your questions or is rushing you through, then you need though say, okay, I need more time with you, I have some questions. And if they're not responsive, it might be time to get a second opinion. 

Tamara Lobban-Jones:

Sound advice.  Thank you so much, Andrea, for joining us today. 

Andrea Hutton:

Thank you for having me.  

Tamara Lobban-Jones:

Absolutely.  I'm Tamara Lobban-Jones, and thank you for joining us on Patient Power. 

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you. 

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