Friday, December 09, 2011

The Strange Saga of Room 108

Today was difficult. I met with Surgeon Number Two at a hospital close enough to walk to. After a stroll down Valencia St. chomping on a carrot—life was good—I was pleased to see Room 108 just inside the hospital’s main entrance. But then I noticed that it said something about administration on the door, and someone inside the room explained that I wanted the other Room 108, and directed me to find the elevators and go up a floor.

Up a floor, I was instructed to go down a floor. Down a floor, I was instructed to go toward the back of the hospital. In the back of the hospital, I was told the office I wanted was around the corner, but all that was to be seen there was a sports medicine office. Fortunately, on the wall to my left was a big display listing every provider’s name. Unfortunately, my person wasn’t listed. I was going to be late. I called the doctor’s office and got voice mail.

A passing nurse took pity on me and said perhaps I wanted a certain group of doctors on the fifth floor. She escorted me up there, but of course that was not the place. I returned to the first floor, by now stressed and frustrated to the point of tears. I consulted a not very friendly security guard and was directed to a room beyond the sports medicine office. On the door it said something like “Podiatry Clinic.” And that was where the breast surgeon was located, of course.

In the exam room, wearing a gown, it hit me that I have fallen into a machine where I’ll be trapped for five years, and then I really cried. I felt absolutely, wholeheartedly sorry for myself. Which is fine. If it’s good that I can feel bad about someone else’s problems, which I can, then it’s good that I can feel bad about my own problems.

On top of everything else, Dr. A. proved to be suffering from multiple personality disorder: she came in radiating a soothing kindness and sympathy, but soon turned much more businesslike, looking frankly at her watch, and she tried to snatch my list of questions out of my hand, saying it might be faster if she just read them to herself. Needless to say, she did not succeed in that. Her bedside manner could not have contrasted more with Dr. R.’s.

Dr. A.’s view is that DCIS is pre-cancer, and she explained that DCIS does not start as Grade 1 and progress to Grade 2 and then 3. It starts out as whatever grade it is and stays that way, though it’s possible to have a mixture of grades. I’d felt a bit rueful about having gone two years without a mammogram, so this made me feel better—a mammogram last year would have found either nothing or the same thing I have now, Grade 3 DCIS, Stage 0 breast cancer.

She also told me that DCIS is almost never hormone negative. It almost always has receptors for estrogen and/or progesterone. While only 30 percent of DCIS goes on to become invasive cancer, they can’t tell which is which, so they have to treat it all. Like Dr. R., she can do surgery before January 1, though she says it will be better to wait until the bruising from the biopsy has abated. The biopsy area is now flaming pink and has been slightly painful, but nothing major.

When I received my initial diagnosis from the nurse educator, she mentioned that I might receive hormonal treatment for five years. For someone who is pre-menopausal (or who neglected to have her ovaries removed when she had the world’s best opportunity to do so), this typically means tamoxifen. Tamoxifen works by blocking the estrogen receptors in the breasts—the ovaries are faithfully producing estrogen, but it isn’t getting to the receptors. This is the part I’m most concerned about. I have had awful reactions to brief courses of hormones in the past, and it also seems as if it would be quite a psychological weight: five years of “Here I am, the sad cancer patient, taking her daily pill.”

Of course, I could try to take my daily pill with a gay flourish, but I was relieved when Dr. A. said it will be my decision whether to take tamoxifen or not based on risks and benefits.

As for radiation, all are agreed it is needed, but it turns out there is a newfangled way of delivering it: intraoperative radiation therapy, or IORT. Dr. A. said that if I want to consider this option, I should go have a word with radiation oncologist Dr. L.

My next moves, therefore, will be to see Surgeon Number Three on Monday, and Radiation Oncologist Number One on Tuesday. No messing here, as my Irish friend Frank says.
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