April 26, 2018

Young and Metastatic

Me and fellow survivor friends Terri Dilts and Julie Deutsch enjoying the Saturday night dance at the conference.

Me and fellow survivor friends Terri Dilts and Julie Deutsch enjoying the Saturday night dance at the conference.

I just returned from Seattle where I attended the Conference for Young Women Affected by Breast Cancer (C4YW), which this year attracted about 650 women. The very first thing I did at the conference was participate in a panel discussion called ”Young and Metastatic.” I was excited about attending in the first place, especially given the fact I have several friends in Seattle and have always wanted to visit the city. But it was especially exciting to share my story and be among the fabulous young women on the panel and meet and talk with audience members, who could relate on so many levels. As it turned out, I was the only women on the four-person panel who was first diagnosed with early stage cancer (mine was stage 2 at first before spreading to my liver and distant lymph nodes five years later in 2008.) Everyone else was diagnosed with stage IV right off the bat and all had doctors who told them at first they were too young to have breast cancer, which seems to be why they were diagnosed so late in the game.

I’ve been thinking a lot about young breast cancer survivors. Only 5 percent of breast cancer survivors are diagnosed under 40, but, according to the Young Survival Coalition, it accounts for 70,000 new cases a year. Women age 15-54 die more frequently from breast cancer than any other cancer.

The other day, there was a discussion on a metastatic breast cancer Facebook group asking how many were young when they were diagnosed. The thread was pretty long. So why are there so many who are metastatic?

One of the reasons you see a lot of metastatic cases is breast cancer is more aggressive in young women. In fact, studies show that breast cancer in women under 40 differs biologically from cancer faced by older women. It seems like a cruel joke to be diagnosed so young and then get hit with a more aggressive cancer.

Young women also have denser breast tissue, which makes it difficult to detect and is the reason they don’t recommend mammograms for this group. Because it is “rare,” doctors often misdiagnose it, telling women they’re “too young to have breast cancer.” I know several women who were breast feeding and doctors dismissed their lumps as clogged milk ducts. And let’s face it, young women are busy working and often with young children; they barely have time to take care of themselves. I was diagnosed four days before my 39th birthday with a full-time job and a three-year-old daughter. Breast cancer was the furthest from my mind.

I recently spoke at a college sorority fundraiser, and strongly urged the young women there to start doing self breast exams. That’s how I and many of my young survivor friends found their breast cancer. For the life of me, I don’t understand why the President’s panel a while back recommended women not doing them! Don’t get me started on that, but my take is they are more concerned about containing costs than the welfare of patients.

Ideally, there should be a way breast cancer in young women can be detected before it is felt. And I do think there needs to be better follow-up for early-stage women after they are done with treatment. No one told me that I needed to carefully check my armpit (where it returned) and my doctors ignored my complaints of swelling. Follow-up should also include encouraging women to do a lot of things I promote on this site to help prevent a recurrence, such as eating whole, cancer-fighting foods, taking supplements, exercise, stress reduction and seeking support. As fellow survivors know, cancer does not end when you’re done with treatment. Most of us are plagued with fears it will return, but these are things you can do to reduce your risk.

For young survivors living in southwest Ohio, I highly recommend you contact Pink Ribbon Girls (www.pinkribbongirls.org), which provides support and meals, transportation, housekeeping and childcare to women undergoing treatment. And it’s a great organization to donate to, as well.

I’ll share more about the conference next week. In the meantime, be well and stay well!

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