Cancer: Round Two

This is how things change.

On Tuesday, April 9 we celebrate DH’s (darling husband’s) birthday with an extravagant dinner with friends at our favorite restaurant. We make happy noises about the food and pass around bites so rich it is absurd to even contemplate their arterial impact. We simply go with the moment and taste everything.

The next day I’m at MD Anderson for my yearly visit to the survivorship clinic. This will mark – let’s celebrate anyway – my 15th cancer-free year.  The mammogram shows an anomaly.  We take another view. The second shot is inconclusive.  My nurse practitioner meets me in the exam room and says, “I don’t want to alarm you, but we need to get another an ultrasound to make sure it’s benign.”

I’m not alarmed. Lobular breast cancer, which affects approximately 10 percent of all breast cancer cases, does not image well.  Never has, never will.  It’s sneaky. The cells line up in a single file instead of clustering to form a mass.

But by the time I’m in ultrasound, where a radiologist in heavily accented English says, “Do not talk when I have needle in your neck,” I realize, this is how your life changes.  I see the oblong node above my collar bone, a plump little dude, and the needle moving up and down within it.  For a moment something pierces. “So sorry,” the doctor says, “I didn’t put novocaine in the muscle.”

I know.

The ultrasound room is so dark and quiet it has become its own universe, sealed off from regular life. Yet I know that behind the door is a small waiting room where four or five women in bathrobes are waiting. They read old magazines, legs crossed, feet jiggling and twitching. Those gestures mark time. They are waiting while I’m lying still, insanely comfortable on a new gurney (brand new, $4,000 worth of new, the wonderful ultrasound tech informed me) and bundled up in heated blankets. Then I realize a third person is in the room; the pathology assistant for the second, then third biopsy. The tissue will be analyzed immediately. I will know what I need to know what I already know from seeing the enlarged lymph node on the screen. Between biopsies I actually fell asleep. Right now that is my operating definition of mercy, to understand that another diagnosis of cancer is imminent and to be all right with that knowledge.

With cancer it’s not one simple moment but a series of steps, one leading to the next. By the time I arrive home, when DH asks how my visit went, I have to tell him, “not well.” He is a three-time melanoma survivor. “Not well” tells him something he never wanted to hear.

*  *  *

Since April 10 I have been largely offline,  either at MD Anderson or trying to get the next appointment in place, and talking with gracious physicians who have been generous with their time, explanations and kindness.

Plus after 15 years NED I now enter the changed world of cancer diagnostics.  I am no longer a CT or MRI virgin. I drank the fruit-flavored barium smoothie, I’ve had the contrast IV’s.  I ran into the inevitable young phlebotomist who missed a vein the size of a worm; I looked at her pleasantly and said, “go get someone else.”

The scans showed a different, but not rare, metastatic trail. There is nothing in the lungs or liver; but lymph node involvement and small nodules in the peritoneum and along a lymph chain that travels behind the diaphragm. There are positive nodes in the left axilla and neck, which were discovered by ultrasound. There is NO second primary cancer. All of this stems from the first cancer, so neither surgery nor radiation are needed at this point.

Biologically? The cancer’s make-up is the same: 100 percent estrogen positive, progesterone negative, HER 2-neu negative. It’s time to take away this cancer’s food source. I’m about to be so thoroughly estrogen deprived that what I used to complain about menopause will soon become “the good old days.” There are many options for shrinking this cancer and I have every hope that this will happen. The fact that it has been 15 years since my original diagnosis helps considerably.

Last night I started treatment via the local Kroger’s, where I picked up a prescription for Femara (letrozole), an AI or aromotase inhibitor. Where tamoxifen blocks the estrogen receptors on cancerous cells themselves Letrozole blocks the enzyme that converts androgens into estrogen in postmenopausal women. In premenopausal women the ovaries are the primary estrogen source.  In two months we’ll look at what the Femara has accomplished, then consider the double whammy of Aromosin (exemestane) and Affinitor (everomilus),  another AI combined with an oral chemotherapy agent. With both approaches I’ll receive monthly injections of Xgeva (denosumab) to shore up my bone strength.

This morning DH wonders if I’ve experienced any side effects.  “No,” I told him, “all systems are go.”

It has been difficult, and still is, to relate to this new information.  Yet my life is different.  How I prioritize will be different.  One thing is steadfast: my commitment to #BCSM and advocacy. This is as strong if not stronger than ever. So is my knowledge that I am not alone in living with metastatic breast cancer. When there are times of complete stillness, I know all of you will be with me.  That is how I feel about you.  And that we are all in this together, in this moment and those to come.

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Originally published on Women With Cancer, April 26, 2013.

Jody SchogerWriter and Cancer Advocate (Social Media)

Jody Schoger has more than 25 years of experience in public relations and communications in health care, science, education and the arts. Following her own diagnosis with a locally advanced breast cancer in l998, she has since devoted her energy to helping other survivors. She is the author of the “Anchored Activism” column in Oncology Times, the respected Women With Cancer blog, and the creator of Breast Cancer Social Media (#BCSM), a popular tweetchat for breast cancer survivors, also found at www.bcsmcommunity.org. Her writing has been featured in Cure Magazine as well as Cure’s blog. She has served as a grant reviewer for the Lance Armstrong Foundation, is a member of the Breast Health Collaborative of Texas, the National Breast Cancer Coalition, and serves on the American Breast Surgeons Board of Advocates. She recently spoke on survivorship on a #Med2 panel at Standord and will do so again at Life Beyond Cancer Center’s survivorship retreat and the fifth annual Digital Pharma East conference in Philadelphia. Jody Schoger was selected for the 2013 Stanford Medicine X ePatient Scholars program. A frequent guest on SIRIUS radio’s “Doctor Radio,” she also has been quoted several times in USA Today and other publications.

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