Still In Search of the Next Metastatic Breast Cancer Celebrity Spokesperson…

As I read Angelina Jolie’s New York Times article, I thought, “Wow, a celebrity spokesperson for hereditary breast and ovarian cancer! That will really focus some attention on this issue!” And then I compared Jolie’s statements to those of other celebrities who have shared their own experiences with metastatic breast cancer.
This didn’t take very long because there aren’t any.

Edwards made her metastatic announcement in 2007.

Elizabeth Edwards is probably the closest we’ve come to having a high-profile spokesperson –certainly she is the only one I can think of since my own metastatic diagnosis in 2009. I wouldn’t care to be a celebrity let alone an ill celebrity in the national spotlight. I can’t comment on Edwards’ personal or political life. But I am so grateful that she talked about having metastatic breast cancer. I hope Cate Edwards and her siblings know what that meant to others living with the disease.

I remember coming across an article CNN’s Shahreen Abedin wrote in 2007. It was called “Surgeon Offers Answers on Metastatic Breast Cancer.” It was straightforward and, because Edwards had bone mets like me, I learned a lot about my specific metastatic issue.

CNN: What are survival rates for Stage IV metastatic breast cancer?

Dr. Rache Simmons: It depends on where the cancer is located. Patients can do very well for years if it’s isolated just to the bone. If there is a speck on the lungs or other organ that turns out to be cancer, that could mean a much worse prognosis, a much shorter life expectancy.

The bone is often the first place to spread to with breast cancer. Most breast cancer systemic recurrences (meaning the kinds that spread to the rest of the body) happen in the next two years after the first time the cancer is diagnosed. The next plateau is within five years. After that, it’s very rare to have recurrences. However, recurrences do still happen, even as late as 10 years later. But that’s very unusual.

For patients with small cancers and negative lymph nodes with no evidence of disease spread at the time of diagnosis, still about five to 10 percent of women end up developing metastatic disease.

If the recurrence happens later in the five-year period after diagnosis, rather than earlier, that’s a good sign; the patient will probably have a better response to the treatments. If the recurrence happens very soon after diagnosis, like six months, a year, or 18 months, then patients tend to do worse.

CNN: What would the standard treatment be once recurrence is diagnosed?

Simmons: Probably hormonal therapy. Mainly anti-estrogen types of treatments — like Tamoxifen or aromatase inhibitors. Sometimes chemo is an option, either in addition to or instead of hormone therapy.

Sometimes radiation therapy to localized area, especially if the patient is in pain.

To find it accidentally, when the person is having no pain, is a very lucky thing. Usually what happens is a patient develops a pain and then gets X-rays — and then they find it. [The Q&A continues here.]

The article gave me a lot of  hope when I really needed it.

I will never forget the day in 2009 when I found out I was of one of 155,000 US people living with metastatic breast cancer. The oncologist said my breast cancer had spread to my lumbar vertebrae:  “Hopefully the disease will remain under control for a long time although an ultimate cure is probably unattainable.”

Most people with metastatic breast cancer have previously been treated for early stage breast cancer. Not me–I was Stage IV from my initial diagnosis, something that happens to between 6% and 10% of those living with MBC.

My cancer center’s library had two shelves of breast cancer pamphlets, mostly for women with early stage disease. One had chapters such as “Why You Should Get Prompt Attention,” and “Not All Lumps Are Cancer.”

Not very helpful to my particular situation.

Prior to my metastatic diagnosis, when it was thought I probably had Stage III breast cancer, my would-be surgeon gave me an 85-page booklet called “Breast Cancer: Treatment Guidelines for Patients.”

I am a Phi Beta Kappa graduate of the University of Illinois. I would rank “Breast Cancer: Treatment Guidelines for Patients” somewhere between “Beowulf” and James Joyce’s “Ulysses” in the annals of Massively Complex and Confusing Literature. Beyond the dense text, it also had flow charts seemingly inspired by a Chinese menu: Pick One From Each Column: Type, Tumor Size, HER2 and Receptor Status, etc.

Eventually, I came across “Diagnosis: Metastatic Breast Cancer…What Does It Mean For You?”

This slim MBCN brochure promised “up-to-date facts — demonstrating that today, more women and men with metastatic breast cancer are living longer, productive lives.”

The brochure featured 15 questions and answers about metastatic breast cancer. Question No. 1 was: “Am I going to die?”

This was certainly a top-of-mind question for me.

“Though you may be concerned by statistics you have heard, keep in mind that every individual is unique,” advised the MBCN brochure. “Because statistics are based on the general population, they do not reflect the experience of any one individual. Each person brings to the table a unique set of characteristics that influence her or his experience with breast cancer. In addition, no really accurate statistics predicting survival for metastatic breast cancer patients are available today.”

Those few sentences gave me a lot of hope.

“There is something in our national psyche that makes the diagnosis of cancer in a celebrity something more important,” noted ACS’ Dr. Len Lichtenfeld in 2008 following Christina Applegates’s revelation she’d had a BMX. ” They rise above the rest of us when sadness impacts their lives, and for many of us their disease becomes our disease…”

I hope Angela Jolie’s article will help someone else wrestling with hereditary breast and/or ovarian cancer issues.

In one intervew Edwards touched on what she termed “the competing responsibilities” of being in in the public eye with metastatic breast cancer:  “One [responsibility] is to say to people with breast cancer, ‘This is really hard what you’re going through. Believe me, it’s hard for everybody. … This is perfectly normal to feel exhausted or perfectly normal to feel irritated sometimes, and don’t think less of yourself because those are your feelings.’ On the other hand, we don’t want to be treated as if we’re invalids. So when I’m feeling lousy, I don’t feel like I have the same permission to share that, but I do want people to take care of us — to take care of my sisters, in a sense.”

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8 thoughts on “Still In Search of the Next Metastatic Breast Cancer Celebrity Spokesperson…

  1. I love this post. Full of good reliable information and full of hope 🙂

  2. Ethel says:

    ” I Hate Breast Cancer….especially the metastatic kind” always has wonderful essays to which I can relate personally wnd which make me feel that I am not alone. I also was diagnosed in 2009 after 7 1/2 years of localized breast cancer. My MBC is in the bones and lungs but the tumors in the lungs are tiny. As I go through treatment after treatment to stay alive,and suffer from the side effects of each new treatment, I wonder if it is all worth it — and it is. I am now on Affinitor and Aromasin. The big joke in my Cancer Support Group is that I am the only one who who was prescribed whipped cream with my Affinitor pills because of the horrible mouth sores. I do not know if I have less mouth sores as a result but the whipped cream is great. I also have pretty much all of the side effects for Affinitor that are listed in the sheet that comes with the pills. But my tumor markers are stable. I really look forward to your e-mails. Thanks.

  3. Tami Boehmer says:

    Great piece! You articulate what I’ve been feeling but in a much more diplomatic way!

  4. katherinembc says:

    Thanks for reading, Savvy and Tami!

  5. Colleen Logan Hofmeister says:

    Amen! I, too, was diagnosed AT Stage IV at 44 years of age…after years of annual mammograms AND sonograms. My children at the time were 11 and 15…I was not nearly done yet. That was six (!) years ago and I am still amazed at how little progress we have made in educating the general, pink flag waving public that we have NOT won the war against breast cancer and early detection and awareness are NOT the end all, be alls that they are touted to be! Until my final breath, I will continue my quest to educate the public about the REAL world of breast cancer!

  6. I just saw this post, Katherine. I hadn’t realized that you were also Stage IV from the get go. So few of us are. I sometimes feel out of place in the MBC community, particularly in the wake of all the Angelina Jolie news, because I haven’t had surgery.

    So far, chemo for a year, and now Tamoxifen, are keeping my bone and liver mets stable. While I’m curious about survival stats, I am glad that survival varies from woman to woman (and man). That lets me tell myself that I can live long enough to raise my girl. That’s what I need to do.

    Is it me, or do there seem to be an awful lot of us named Katherine?

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