Uncategorized

The Age of Confusion: Mammograms and Mixed Messages

This is a quiz:   How old should you be when you start getting Mammograms?

You fail if you said an age. At least, that’s where the world’s largest breast cancer organization, Susan G. Komen®, comes down on this most confusing and most important guideline.

Judy Salerno Headshot

Dr. Judy Salerno, President and CEO of Susan G. Komen 

Last week, when the latest announcement from a committee called the U.S. Preventive Services Task Force recommended raising the age for the start of routine mammograms from 40 to 50 for women of average risk, it hit the national news quickly and seemed to fade away just as quickly.

Why the lack of attention? Well, that’s what happens when there’s conflicting announcements and a lack of consensus. It’s hard to report on something that no one can agree is actually true.

Last October, the American Cancer Society offered a different age range. The American Congress of Obstetrics and Gynecology, the Society of Surgical Oncologists, the American College of Radiology and others recommend starting at age 40.

What does it all add up to? Confusion. Recognizing this, some of the groups mentioned above – along with Komen –  are attending a private meeting at the end of this month to try to produce a single set of guidelines. Is that possible? Stay tuned.

Meanwhile, Komen President and CEO Dr. Judy Salerno, head of the largest breast cancer organization in the country, said in a statement that Komen is concerned with the long-range implications of the latest guideline change, and how it could affect a major part of Komen’s mission:  Equal, quality care for ALL. That’s because the USPSTF is the body that insurance companies look to when deciding what preventive services are covered.

Salerno said in a statement that women and their doctors should be the final decision-makers when it comes to breast cancer screening, and that screening tests, if recommended by a healthcare provider, should be covered by insurers regardless of a woman’s age.

“A lack of coverage would be most harshly felt in high-risk and underserved populations,” she said, “African-American women, for example, are often diagnosed at younger ages with aggressive forms of breast cancer – and die of breast cancer at rates over 40 percent higher than white women. Screening at younger ages is a critical tool for these women.”

Salerno encouraged increased investment in research to develop better screening tools. Komen has funded more than $33 million to find more precise early detection methods such as blood and tissue tests. “Until those are available, mammograms are the most widely available and cost effective test that we have, and women and their healthcare providers should have access to them,” she said.

We’ll keep you posted on how this all might change (or not). Meanwhile, if you have any questions, we urge you to call your doctor! And, for lots of great information on understanding your risk, go to http://www.komen.org.

 

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Breast Cancer Survivors, Uncategorized

Survivors: Hear Them Roar! – Or Don’t

Here’s a great perk:  Sometimes people actually congratulate me for working at Komen!

Pretty often, however, I get what is obviously a deeper, more serious reaction. It can happen anywhere, anytime.  Last week I was sitting at my hair salon and got into a conversation with a woman next to me. (You tend to have your inhibitions down when you are waiting for the color to soak in…) She asked what I do and then was pretty quiet after I told her

I recognize this now and have come to appreciate that righfully, everyone has their own way of dealing with cancer  — even well after the fact. Still, I have found that breast cancer Survivors tend to fall into 2 groups, both extremely inspiring and motivating, and both very much supporters of our cause.

Some can be described as fierce warriors in the fight against breast cancer, and this group wears that battle on their sleeves.  These wonderful people know that their story can change lives – that telling it will possibly educate or remind people about preventative measures, or that raising money will have a deep impact in our community.

One of our active volunteers has worn some sort of pink clothing every single day for the last 17 years –  since she was diagnosed.  That’s a determined fighter right there!  She obviously has a story and if asked, she’ll tell.

In the other group are people similar to my hair salon friend.  At first, they seem to soak in the idea of what I do for a living and want to look away.  I get it. There is a feeling of “that awful part of my life is behind me and I don’t want to revisit it.”   Boy, do I appreciate that sentiment.  They fought hard not to let cancer define them when they were sick, and they darn well won’t let it now.

Yet, 3 minutes after she asked me, I knew her story.  She was diagnosed before age 40. She fought invitations to join the Race for the Cure or other breast cancer events because she didn’t want to be “that person.” She didn’t want to wear pink and she didn’t want to be labeled. But then her friends talked her into it.

As she spoke of the Race experience and how wonderful it was, she broke down a bit. “I guess I did it to show my kids that I could,” she said through tears.  “And I’m glad I did.”

All types of Survivors and their co-Survivors join us in our mission to end breast cancer – some vocally, some in other ways. We are very grateful for them all.

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Pru
A New Year

One Loss Is Too Many

Let’s get this out of the way first:  I don’t wear pink every day.

It’s amazing how many people ask about my wardrobe. Yes, there is a lot of pink in my closet now, and I do wear it. But since it’s so prevalent in my life I tend to use it only on the days that I am making a public appearance or presentation on behalf Susan G. Komen® Western New York. Of course, as Executive Director, there are a lot of those days! And that’s just fine.

After 18 months in this role, I am so moved by the opportunity I’m given every day to be a part of a grassroots battle against breast cancer that I thought I would share some of the incredible Komen experiences in a blog – in the hopes that we can all learn and be in the fight together.  With “In the Pink,”  I aim to keep the posts centered on some personal and institutional lessons learned, challenges surmounted, inspirations acquired, and the personalities at the root of these stories.

The timing seems right – it’s a new year, and a time when many individuals and organizations reflect on the highs and the lows of the past 12 months. I imagine that in every office there are major ups and downs. Not every workplace, however, is a cancer organization. Our highs and lows, are not always your average “we surpassed our quotas” or “our colleague left for another job” kinds of highs and lows. We do have those, of course, but when I started reflecting on the year, I ended up with this (copied, verbatim, from my notes):

2015: We raised money, we collaborated, we advocated, we changed a lot, we were as confused as you, we saved lives … we lost one.

I didn’t plan to share my notes, but there they are.   A quick explanation: At Komen WNY in 2015, we did a decent job raising money (of course, there’s never enough to cover the needs); we played a role in some state and federal legislative victories; we moved some fund-raising events, ended some, started new ones; we tried to make sense of and guide people through complicated new guidelines for breast cancer screenings; we led educational events; we funded life-saving programs; and we participated in community health-care coalitions.

I can only speak for myself, but I believe everyone involved in all of these accomplishments — board members, volunteers, donors, supporters and staff – are incredibly proud of the work we do, and the year we have had.

But we lost one.  We lost a special one.

Prudence C. Philbin, 43, passed away from breast cancer in September. Prue was the wife of Komen WNY Board Member Scott Philbin, mother of Sean and Tessa, and a partner at a local law firm.  Prue – that’s her and her kids in the photo above – was a friend to Komen WNY. She devoted time and energy to be our top fund-raiser, raising over $9,000 for last June’s Race for the Cure.  Prue and Scott offered much of themselves to the Komen cause, even with so much on their plates.

The devastation of this loss can’t be described. The grace and strength with which Prudence and Scott lived through Prue’s final months were so finely honed that only they and their closest friends and family knew that death was imminent. We did not.

Our work to fight breast cancer – the power of pink — has been so successful over the last 33 years since Komen was founded that many don’t expect death to come to someone so filled with life. But breast cancer kills. Of all people, I know this. I know the statistics by heart. Breast. Cancer. Kills. But still, we don’t expect it.

I’ve had close friends and family go through horrible battles with breast cancer; that’s one reason I do this for a living. But what we do at Komen and what we need to do more and better has never been clearer to me, and to all of Komen WNY.

Prue’s loss is our battle. Scott, Sean and Tessa are my motivation every day – as are the incredible Survivors and other volunteers I am privileged to have on the Komen battlefield with me. From where I sit there is much to learn, and much to do.

My hope is that I can share a little bit of our daily fight through this blog, so as the highs and lows come and go in 2016, we are learning from them together and fighting for a day when we don’t lose one  more life to breast cancer.

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