Living With Metastatic Breast Cancer: Maria Wetzel

 

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.  Elyse Spatz Caplan is the Director of Programs and Partnerships at Living Beyond Breast Cancer.  And I want to thank you again for really being a great partner to this project.

Elyse Spatz Caplan, Director, Programs & Partnerships, Living Beyond Breast Cancer:

Thanks so much, Selma.  It’s really a pleasure to be here.  This issue, metastatic breast cancer, is critically important.  It’s what we hear at Living Beyond Breast Cancer day in and day out and so, I think it’s really timely and relevant and I’m delighted to be part of the program.

Selma Schimmel, Founder & CEO, Vital Options International:

We’re going to begin with what it means to be a metastatic breast cancer patient.

Elyse Spatz Caplan, Director, Programs & Partnerships, Living Beyond Breast Cancer:

Maria Wetzel is a research advocate.  I have heard of Maria’s name numerous times over the years I’ve been in the breast cancer field, so it is a delight to meet her.  And Maria is also a woman living with metastatic breast cancer.

Maria Wetzel, Breast Cancer Research Advocate, National Breast Cancer Coalition:

I was first diagnosed in 1996 and I was stage-2B.  And from the get-go I always felt that I wasn’t finished with it but about 9 years later I thought, “well, maybe- maybe I’ll be one of the lucky ones.”  And then I had a chest wall recurrence and then I started on aromatase inhibitors.  The tumors have always been hormone sensitive estrogen, very strong estrogen positive. And I was on those for 5 years and went off them and within a year I was diagnosed with metastatic disease, and that was about a year ago.  Innumerable, but small spots in my liver; don’t you love that?  Lungs and, actually I sought attention because I had shortness of breath.  It was not a pleasant moment when I saw the x-ray with a very large pleural effusion.

So I’ve only been living with it for a year, but what comes to mind is that what it means to be a metastatic breast cancer patient, we have so many different groups: -and there are those that are diagnosed from the beginning and those that have a late recurrence, -there are those who have hormone sensitive tumors and there are those that are either triple negative or have HER-2 positive tumors, -there are those that have no evidence of disease or that are stable, -and then there are those of us who have not found something to put us in that state yet, but we’re hopeful, -then there are those that have very aggressive disease.

I personally think I have a fairly indolent metastatic process but the chemotherapies that we tried first did not do anything for it.  So now I’m trying faslodex, which is an anti-estrogen.  And I also switched oncologists at the time of my metastatic diagnosis knowing that I needed to find an oncologist that basically I could live with for the rest of my life.

Another group is, a lot of women with estrogen receptor positive disease have only bone metastasis, sometimes more than just bone- I surely did.  And then there are those of us who, like I do not have any bone, but I have enough visceral metastases.  And then there are those that develop brain metastases.  So you have very different groups that are treated quite differently and their quality of life can be quite different over the course of beginning treatment and towards the end of life.  So, I think, with bone metastases there is, they have to deal with a lot of pain and I don’t see that necessarily – and you can correct me if I’m wrong – with visceral metastases to the extent that patients with bone metastasis have this.  But I happen to have moderate to severe shortness of breath, so your quality of life varies.  But we share a lot in common knowing that, for most of us, our lives are not going to go the normal course of life and that we will die quite prematurely.

And so, dealing with that aspect of it always is quite different.  I thought I knew a lot about metastatic disease because I’ve been an advocate for 16 years and I’ve always been interested in those living with metastasis, but the reality was quite different.

END OF VIDEO


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