Fearing the beast's return

Leave it to Dr. Charles to remind me of something that happened recently, albeit in a bit of a roundabout way. It's something I would rather have forgotten, but, when you dedicate your life to battling the beast that cancer, it is something that is inevitable and something a doctor has to learn to deal with in his cancer patients.

Fear of the beast's return.

Paradoxically, it was not anything sad at all that Dr. Charles wrote about, but rather the triumphs that we can have over breast cancer that can give a survivor her life back and how a woman who has undergone a mastectomy to beat her cancer can demonstrate incredible dignity. However, as Dr. Charles' anecdote reminds us, despite the dignity and victory over cancer won by this patient, there was always one thing lurking in the back of her mind, as it does in the back of the minds of all cancer survivors, whatever the type of cancer:

"There's one last thing," she said. "I have a little dark spot on my skin where they did the incision. It's in the scar. Can you just make sure it's not cancer?"

How many times have I heard that question or something similar? Women who have taken the worst that breast cancer can throw at them, the worst that chemotherapy and radiation could do to them, and made it through intact. Intact, maybe, but not unchanged. How many times do they come into my office asking the same question as this woman asked Dr. Charles: Is this little lump anything to worry about? Most of the time, it's not even really a real lump to experienced clinicians, but rather the folds and lobules of normal breast tissue. In their heightened fear of the return of the seemingly vanquished beast, women will become hypersensitive to any changes in their breast, especially younger women. Changes that normally happen during the menstrual cycle that they wouldn't have paid any mind to before their encounter with the beast now on occasion cause them to shudder. Dark memories assault them. Who can blame them? The beast, when it is breast cancer, can return, even 20 years after apparently being successfully banished. Patients know it, and certainly we doctors who take care of cancer patients for a living know it. It is a fear that cancer patients carry with them for the rest of their lives. Although I have never asked, I sometimes picture patients who survived cancer, just before meeting their end, expressing thanks that it wasn't cancer that finally got them.

Fortunately, for Dr. Charles' patient, the fear was unfounded--this time:

She opened her gown to demonstrate the spot. Underneath was stretched skin upon bone. It was warm, alive, and smooth like the skin of her back. There was no nipple. And somehow it was elegant. It was a testament in flesh of the human will to survive and the body's resolve to regenerate. The collagen matrix holding her scars together was a tattoo that, when coupled with her bold outward asymmetry, shouted to the world that this woman had walked through a valley of shadows and emerged stronger. Accepting the loss of her breast was as integral a part of her femininity as her first training bra.

People who haven't seen them before often don't realize that mastectomy scars are long and that the chest wall isn't always flat as you might envision. There is frequently an ovoid indentation, formed by the edges of the dissection of breast away from skin, where breast tissue used to transition into the normal fat and subcutaneous tissue elsewhere on the torso, like a phantom of what used to be there. But I suppose that it can be beautiful in a way, especially in a patient such as the one Dr. Charles describes.

Besides conveying the dignity that comes with surviving a long and difficult therapy, in that single passage, Dr. Charles also reminds us that, to cancer survivors, even very little things, things that you or I wouldn't think twice about, such as a small bit of pigment on a scar or normal changes that occur in the breast during the menstrual cycle, as, can be a reason for fear, fear that the beast they thought defeated has returned to take their lives.

And sometimes they're right. And Dr. Charles reminded me of that, although such was not his intent.

Over a year ago, I described just such a case. A young woman in her mid-thirties with two children, I first met her relatively early in my tenure at my particular cancer institute. Her tumor was too large to be removed with a lumpectomy; so she ended up undergoing a mastectomy with immediate reconstruction. When she returned to clinic that day nearly a year and a half ago, she, like Dr. Charles' patient, had weathered the worst that cancer and modern medicine could throw at her, so much so that I hadn't seen her for a year and a half before our fateful reunion. Her care had been taken over completely by the medical oncologist, and, three years after her diagnosis, she was being transitioned into a less rigorous, less frequent followup. She was beginning to move on with her life. She was beginning to breath a little easier.

The beast had other ideas.

I recall my reaction when I examined her and found a large, hard supraclavicular lymph node:

She had a rock-hard, 2 cm supraclavicular lymph node on the side of her mastectomy. It wasn't soft and rubbery, as reactive nodes, even very large ones, usually are. No doubt the doctors who frequent this blog know what that means, but for those of you who don't it means (almost certainly) a tumor recurrence in the lymph node in her neck. It means metastatic disease. It means the tumor has recurred as metastatic disease.

It means death, because metastatic breast cancer, although treatable, is not curable. And she isn't even 40 yet.

I'm afraid my reassuring facade must have slipped for a second when I felt the node, because I briefly met her eyes and her eyes widened. She knew. In retrospect, I think that had known all along, from the moment she had first felt it in her neck. I did a fine needle aspiration of the node (which ultimately proved the diagnosis I had feared) and called the oncologist, who saw her and concurred that the node was very suspicious. Tests were ordered, and, once again, the patient's life could never be what it was before.

Nor would it last much longer, I neglected to say. In fact, it lasted less than a year and a half. A few weeks ago, I learned that her disease had claimed her. She left behind a husband and two young children.

Just the other day, I was called to see a patient of one of my partners because he was in the O.R. She was a young woman in her early 30's who, about a year ago, had been diagnosed with breast cancer. She had undergone lumpectomy, sentinel lymph node biopsy, followed by dose-dense chemotherapy and then radiation therapy. Our nurse had been seeing her because she had felt a lump in the same breast. When I entered the room, her sense of terror was palpable. She did have a little something in the axillary tail of the breast (the part under the arm). It could have been a lymph node. It could have been a mass. Or it could have been just lobule of breast tissue. I couldn't tell for sure on just physical exam alone, and it was too vague to stick a needle into to try to get some cells for cytology; so I suggested ultrasound as a first step. She wanted me to tell her that it was nothing. My instinct was that it probably was indeed nothing, but I couldn't be sure enough to tell her that with any confidence. And so she will have to live in fear again until either the ultrasound shows nothing, my partner biopsies the area, or both. Would she be like Dr. Charles' patient, or would she be like my patient who recurred? For the moment, until the tests are done, she (and I) can only wonder.

Such is the power of the beast over patients--and their doctors.