I volunteer with the Metastatic Breast Cancer Network. At the group’s annual conference, someone living with MBC introduces every expert speaker. Prior to introducing the medical expert, each patient shares his or her story.
I had the honor of introducing Johns Hopkins’ Dr. Stephen Baylin. In addition to being a Rock Star of Science, he is on the Stand Up 2 Cancer Dream Team.
Here is my introduction:
My name is Katherine O’Brien. My breast cancer story began on July 6, 2009. I was 43 years old. According to my Microsoft Outlook calendar, my mammogram was 1095 days overdue. Yes, I put off having a mammogram for three years.
The mammogram technician seemed to think we were doing a fashion shoot: “Now try it this way, that’s right, lean into the machine a little more, hold it right there.”
There are Playboy Bunnies who don’t have as many pictures of their breasts as I do.
Finally, I was sent across the hall for an ultrasound. The technician tapped away at her keyboard. Then she left, saying she would be back soon.
When you have a good mammogram, you never see the radiologist. When you have a bad mammogram, you get the Publishers Clearing House Sweepstakes Prize Patrol, only without the balloons and the oversized check.
It took three people to give me the bad news: The silent technician who hovered near her machine, the radiologist and the patient navigator.
The radiologist looked hungover or maybe that’s just how you look when you sit in a dark room all day emerging only to tell people they have cancer and they should see a surgeon.
The patient navigator was stroking my leg as the doctor spoke. I could only think: “This woman feels sorry for me, this must be really bad.”
How could I have breast cancer?
I was practically flat chested. In my flawed logic, it seemed reasonable that if you had big breasts you had a big chance of having breast cancer and if you had almost no breasts like me, you would have almost no chance of having breast cancer.
Everyone knows that most lumps aren’t cancer. And although my mom died from breast cancer, everyone knows most cancer isn’t hereditary. Plus my mom had inflammatory breast cancer which is pretty rare.
So how could I have breast cancer?
A few days after I saw the radiologist, a breast surgeon did a fine needle biopsy. It is called a “fine needle biopsy” because if they actually told us “Look I am going to jam this thing that looks like a harpoon gun into your breast” we would all make a dash for the parking lot, never to be seen again.
The breast surgeon told me that I probably had Stage III breast cancer. She recommended a mastectomy. After we had talked awhile, she asked if I had any additional questions.
“Just one,” I said. “We’re Jewish. What about genetic testing?”
“Oh,” said the surgeon. She stopped just short of saying “I didn’t realize O’Brien was a Jewish name.”
My mother was Jewish—and like most U.S. Jews I am of Ashkenazi or Eastern European descent. Ashkenazi Jews have a higher risk for a genetic mutation which in turn carries a higher risk for breast and/or ovarian cancer. Testing showed I do not have the BRCA mutation.
Before I had the mastectomy, I was sent for the usual tests: MRI, CT and a bone scan. I knew I was in trouble when the bone scan technician asked me if my back hurt.
A bone biopsy revealed a low volume of mets to my lumbar and thoracic spine.
My surgery was canceled.
Learning I had Stage IV breast cancer was devastating. I assumed that I would soon be dead. Thankfully that hasn’t happened. So far.
The Metastatic Breast Cancer Network’s publications gave me a lot of help and a lot of hope as did Lillie Shockney’s book, “100 Questions & Answers About Advanced and Metastatic Breast Cancer.”
I have been stable on an antihormonal treatment: a pill plus ovarian suppression and a monthly bone booster.
Although surgery isn’t standard of care, there is thought to be some benefit. Last year I had unilateral mastectomy followed by radiation.
Someone asked me something I thought was pretty inane.
But in a broader sense, it’s actually a great question, one that relates very much to Dr. Stephen Baylin’s topic. The question was: “What does your cancer mean for your twin?”
Now, I have a twin brother.
Many people, upon learning I have a twin brother, have asked: “Are you identical?”
Well, in layman’s terms, one of us has a wee-wee and one of us does not. So there are some kind of critical differences but genetically, yes we do share some common ground.
Dr. Baylin’s specialty is epigenetics. If our DNA is like a computer’s hard drive, epigentics would be the software.
My cancer isn’t hereditary—so theoretically my hard drive is fine. But something went wrong with the software. Or to use another analogy, if my DNA were a piano, I’d have 88 keys. But epigenetic changes in my DNA would mean that certain keys would be noiseless when struck because they had been turned off.
Dr. Baylin has shown disruptions in tumor suppressor genes, which normally protect cells against cancer, are more often due to epigenetic silencing than outright mutation.
Perhaps most exciting, Dr. Baylin is working on ways to turn the silenced genes back on so they can do their jobs. I could play Chopsticks on my DNA.
Someday, maybe Dr. Baylin’s work will shed some light on how a flatchested, Jewish girl named O’Brien got cancer.
Maybe even more importantly for my nonidentical dyzgotic twin and all my siblings and their children, maybe someday Dr. Baylin’s work will help us understand cancer at a molecular level and usher in an era of highly personalized treatment.
Dr. Baylin’s topic is “Cutting Edge Research.”
Just a reminder before I tell you more about Dr. Baylin—if you have a question during this session, please write it down—there are index cards in your folders—and give the card to one of the volunteers.
Now, about Dr. Baylin:
He is Deputy Director of The Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins. He is the Virginia and D.K. Ludwig Professor for Cancer Research and a Professor of Oncology and Medicine. He received his MD from Duke University and also completed an Internal Medicine residency there. He completed a fellowship in Endocrinology and Physiology at Johns Hopkins. His clinical interests include molecular markers for cancer risk assessment, early diagnosis and prognostic monitoring and the use of reversing gene silencing.
Please join me in welcoming Dr. Baylin.
What a terrific speech! It hit every mark: informative, funny, soulful, heartfelt, thought-provoking. I bet you had every ear leaning in to hear more.
You have a knack for getting your point across in a way that makes people take notice and listen. I hope they keep listening.
That was a remarkable introduction, Katherine.
But then, you are a remarkable person.
Katherine. Thank you for this. First, I learnt about your diagnosis, and found out more about you…
But also I properly understood what epigenetics are. I heard Sandra Steingraber talk about them and didn’t grasp quite what they do… and your links are excellent too. Roll on the day we really do have personalized cancer treatments.
Thanks, really interesting reading.
Best to you, Sarah
I wish I could have been there- sounds like you rocked it!
[…] the meantime, I did find that blogger Katherine O’Brien, a member of MBCN, posted her introduction for one of the speakers, Dr. Stephen Baylin. It is a wonderful introduction both for Dr. Baylin and for O’Brien, who tells a story with […]
Video presentations from the conference will be posted in a month or so at http://www.mbcn.org. Here is a brief report from the Medical Lessons blog:
I love you, Katherine. You do know that, don’t you? I’m so glad you were there & I look forward to reading up on this conference. Wish I could have been there. Baltimore is not that far, after all. xx
Here’s link to the intro; all of the presentations will uploaded shortly