Living With Metastatic Breast Cancer: Shirley Mertz

 

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:

Shirley Mertz is a Board Member of the Metastatic Breast Cancer Network and also Field Coordinator for the Illinois area of the National Breast Cancer Coalition.  And Shirley and I have known each other for many years and I’m delighted that she was able to be a panelist today.

Shirley Mertz, Board Member, Metastatic Breast Cancer Network:

When you get diagnosed with metastatic disease it is shocking.   I mean, I remember sitting in a chair frozen; I couldn’t believe what I was hearing, I just couldn’t.  In fact, I was called back in and I just couldn’t get up out of the chair.  And then you become very angry.  And for me, taking off both my breasts… I mean, what more do you want?  After much crying and much emotional upheaval you then realize you have to deal with what is because you can’t change it.

I began my breast cancer journey in 1991.  I was diagnosed with inositol breast cancer carcinoma.  It was ductal, involved in my ducts of my left breast.  I was a younger person with 2 little boys and I was very concerned that I wanted to be the one that raised them.  So although they suggested that I could have a lumpectomy and radiation, I chose to have a mastectomy, not only in my left breast but I asked that both my breasts be taken off.  There was no history of breast cancer in my family but I’m kind of a person that, at the time I guess I wanted to take a fly swatter and hit a gnat, but I just thought that that would hopefully mean that I was done with breast cancer.

At the time I did even ask is there something more I should have?  “No, you really did more than you really needed to do.” So I continued with checkups and then in 2003, 12 years later, I had some pain in my left chest wall.  So I went to see my doctor and she suggested a bone scan.  And it was then that I was told that I had some spots on my spine, not in my chest wall.  And then with a bone biopsy it was confirmed that I had 3 spots on my spine.  The next step, that I think is important for all patients to know about, is that an analysis was made of my bone and it showed that it wasn’t any longer hormone positive, as my first cancer had been.  But my doctor discounted that because he spoke about bone being difficult to analyze.  So he began a treatment course that was tried to use an anti-estrogen agent.  And within about 10 months, in another PET scan, my breast cancer had gone throughout my skeleton and into my liver.  Then I asked the doctor, “oh my gosh my liver, I’m really in a mess.”  And he said, “Oh I don’t think that’s anything.”  Anyway, what I chose then was to leave the doctor – and that’s another important message – and found a new doctor.  So my breast cancer turned out to be hormone-negative in the metastatic setting, and also HER-2 positive.

So I received appropriate treatment for the next 10 months and I have been living on a maintenance drug for the HER-2 protein and I, for the last 6 years, have had no evidence disease on scans.  And so I’ve been very blessed, but again, I’m not cured.

You have to become educated.  And even though you don’t like to read what you’re reading about – it’s not your choice of subject matter – you force yourself because knowledge is power.  And knowledge is power for how you’re going to interact with your doctor and how you’re going to ask questions.

And then the other part is, not only are you trying to get yourself together, but then you have to begin this long process of educating your family and those that you are friends with.  You lose some friends because most people don’t like to… what do you say to someone who says this is incurable?  You know, even if you don’t say it in a dramatic fashion they don’t know what to tell you – they feel sorry.  Then, another thing is that early stage breast cancer patients often don’t want to sit by you because, as one woman said to me and she told me straight to my face, she says, “you are my greatest fear, but you also are my greatest hope.”  And I thanked her for being so honest.

So, it’s a constant- you’re always in treatment, you can’t help but think that about the fact that your life is shortened and that you really are looking at death in the end, and although we all are going to get there, it’s not what you ever imagined your life would be.

END OF VIDEO

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