My First Breast Cancer Conference

This past weekend I went to the Young Survival Coalition (YSC) 2015 conference in Houston. It was my first time ever attending a breast cancer conference. And I had mixed feelings about it.

Over the last three years since my diagnosis, there are moments where I still can’t believe this is my life. How am I a breast cancer survivor? How did this happen? I ate right. I exercised. I got enough sleep. I didn’t eat a lot of sugar. I did yoga. I did everything I was supposed to do. Although I now know that my breast cancer happened by a combination of bad genes and bad luck, I am still overwhelmed at times by the feeling that I wish it never happened.

As the conference went on, I met several other young women survivors that were both smart and inspiring. They knew their stuff about breast cancer. And they were there to help each other. Each year, only 13,000 young women (40 years old and younger) are diagnosed with breast cancer. So this gathering is important to us young women so we don’t feel alone. Also so we can talk about issues that are specific to young women, that older women don’t have to deal with.

One of the highlights of the conference was listening to amazing speakers. Two of my favorite were Dr. Susan Love, breast cancer surgeon, advocate and author, and Dr. Don Dizon, gynecological oncologist.

I’ve been a fan of Dr. Love’s since my college days as a women’s studies major. Every women’s health class I took talked about her work. And she did not disappoint at this conference.

Dr. Love spent a lot of time talking about collateral damage from breast cancer – meaning the physical and emotional damage from treatment. Dr. Love went through treatment for leukemia in 2012, so she knows first hand what she’s talking about.

One of the most profound slides from Dr. Love’s presentation was the difference in how doctors see us as patients and how we as patients see ourselves.

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Dr. Love also talked about the bullshit of pinkwashing. There’s nothing pretty about breast cancer and in my opinion, the ribbon should be black not pink. And most of the money that is raised from pink products doesn’t actually go to breast cancer treatment or research. It’s time to move from awareness of pink products to a cure for this horrible disease that kills too many women (and men) each year.

Dr. Love closed her speech by saying, “I want to find the cause of breast cancer and end it.” The room erupted in cheers. No one else should have to go through what all of us survivors have gone through in that room.

Dr. Dizon spoke about breast cancer as a disease and the research, both of which are complicated. There are many different types of breast cancer and many different treatments. There’s no one size fits all.

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We know that 1 in 8 women are diagnosed with breast cancer. But Dr. Dizon reminded us that statistics are irrelevant when you’re the one diagnosed. And breast cancer doesn’t kill because of a tumor in the breast, but where it spreads from there.

Dr. Dizon closed his speech by saying, “We must never stop pushing for what we want. We must never stop pushing for what we can do better. Our lives and our loved ones’ lives are at stake.” So well said.

Another memorable session was on fitness and nutrition. I’m pretty serious about both my fitness and nutrition, so it was great to have all my habits reinforced. Sami Mansfield, an oncology exercise specialist, spoke on these topics.

Sami talked about the importance of good nutrition, and that the Mediterranean diet is the best. No news there, but good reinforcement.

photoSami also discussed how estrogen lives in fat. So since my breast cancer is estrogen positive, meaning my tumor fed on estrogen, keeping estrogen lower in my body is key. Therefore keeping my body fat low is important.

One thing did surprise me about Sami’s talk. She said that a new study came out which showed that breast cancer survivors no longer need to wear a compression sleeve when exercising or flying to prevent lymphedema. This was SHOCKING. My physical therapist was more than insistent on this. So I’ll be following up with him this week. Although I do wear my compression sleeve without fail, it does make me want to exercise less. Wearing that sleeve is just a constant reminder of what I’ve been through with breast cancer. If I could have one less reminder, that would be great!

The last highlight from the conference was the session on advocacy. Of course it included the great Dr. Love. She reminded us that we need more wild ideas if we’re going to get rid of breast cancer. Dr. Love proceeded to tell the story of how the HPV vaccine was discovered at the National Cancer Institute (NCI) while there was a woman as the director. If it weren’t for her leadership, cervical cancer wouldn’t have almost entirely been eradicated. We need the same thing for breast cancer. It just so happens that Dr. Harold Varmus stepped down from NCI earlier this month. It’s time for another woman to head NCI and end breast cancer in my generation’s lifetime.

After this session, a petition was created to do just that – nominate a woman to head NCI. You can sign it here.

All in all, it was a great weekend. I’m grateful to YSC for putting on such a wonderful conference. I connected with friends from my support group and made some new friends. Got great reinforcement that my doctors are on top of their ongoing surveillance of me and I’m in good hands. And most importantly, was reminded that I’m not alone.

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Another Study Asks If Mammograms Are Helpful or Harmful

In yesterday’s New York Times, there was an article, “Vast Study Casts Doubts on Value of Mammograms.” The writer explains how the study questions whether mammograms save lives or impose unneeded tests and treatment. You can imagine how upsetting this uncertainty is, especially for a breast cancer survivor.

In all cancers, there is a long-standing debate about how worthwhile scans are versus the radiation imposed on the body from these tests and the anxiety induced from such tests versus leaving a tumor in place that wouldn’t harm or kill someone. I understand the arguments on all sides, but I always have a strong reaction when someone says mammograms aren’t worth it.

For me, if one life was saved from an annual mammogram, then it’s worth doing. Especially if that one life is mine or someone I love.

I was diagnosed with breast cancer at the age of 39. I hadn’t yet had a mammogram. Even though I come from a long line of women with breast cancer, none of my doctors suggested I get a mammogram before turning 40. And a few years earlier, a national government panel recommended mammograms be done starting at 50, instead of 40. Even more reason for my doctors to not push for a mammogram.

I often kick myself about not insisting that I get an annual mammogram starting at 35 years old, because of my family history. I found my lump in a routine self-exam, which I did without fail every month since I was in college. If I did get annual mammograms before age 40, would we have found my breast cancer earlier? Would we have found it before it spread to my lymph nodes? Would it have spared me having a mastectomy? Would I not have had to go through chemo and radiation? Of course we don’t know and will never know the answers to these questions. What ifs do little but create guilt. So I try to let that go. But I do admit it creeps into my mind sometimes.

Dr. Susan Love, one of the smartest, most well-known and accomplished surgeons and advocates on breast cancer, was interviewed about this study on KRCW’s Press Play with Madeleine Brand. Dr. Love talks about how there have long been questions about mammograms. And how this study shows that there are many different types of breast cancers and there isn’t a one size fits all approach to breast cancer screening and treatment. Which means we need research and studies to continue.

As Dr. Carol Lee of Memorial Sloan Kettering Cancer Center explains on the PBS NewsHour, this study is an update on a study reported nearly 20 years ago. Her opinion is that this study is just one in a long list of studies about mammograms that actually show a benefit of mammograms. Her opinion is that mammograms do save lives. I tend to agree with her.

I have another problem with this study, which was done with women ages 40-59. Once again, when breast cancer is researched, talked and written about, young women (women 40 and under) and women of color are barely, if at all, discussed.

As the Young Survival Coalition states, it is estimated that more than 250,000 women diagnosed with breast cancer at 40 or younger are living in the U.S. today. More than 13,000 young women will be diagnosed this year.

Mortality rates for breast cancer have been decreasing since 1989, with larger decreases in women under 50. That’s great new. But what about women under 40? The survival rates for young women are not good. Compared to older women, young women generally face more aggressive cancers and lower survival rates. The statistics on women of color aren’t good either. Although the overall lifetime risk of breast cancer is lower for Black women compared with white women, the death rates are higher.

Would annual mammograms save the lives of more young women and women of color?

When we look at the benefits and disadvantages of mammograms, let’s expand the conversation. Let’s look at all types of breast cancers, all ages of women and all ethnicities. Not until there’s a cure for breast cancer or a vaccine, the goal continues to be to save lives. And in my opinion, annual mammograms play a part in that.