Respectful Insolence

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.

Comments

  1. #1 Dave S.
    June 15, 2006

    Orac writes:

    She was a young woman in her early …

    You might want to correct the number that follows Orac.

    [ORAC note: fixed typo.]

  2. #2 Mark Paris
    June 15, 2006

    It is not only the patients who must deal with the fear that the beast will return, it is also the families of those patients, the ones who love them. In the midst of a fight with my wife, in my most angry moments, there is almost hidden in my mind a little memory and the beginnings of a nightmare. It was colon cancer for my wife. It was six years ago, and it’s still there.

  3. #3 Mark Paris
    June 15, 2006

    To be clear, it is the memory of the cancer and the fear that it will return that remain. My wife continues to have clear checkups and we can even joke about how silly we are after the sedation of a colonoscopy.

  4. #4 anjou
    June 15, 2006

    On the lymphoma support lists the fear is sometimes refered to “scanic” attacks or PSA –pre/post scan anxiety…

  5. #5 Big Al
    June 15, 2006

    Just a reminder to men, they too, can get breast cancer.

  6. #6 Abel Pharmboy
    June 15, 2006

    My mother’s diagnosis of breast cancer at 44 came when I was a junior in college. At the community hospital where she had her mastectomy, chemo and radiation, her case was handled by a remarkable female surgical oncologist. The experience was a message for me to direct my scientific efforts toward cancer – I just wasn’t sure whether to go to med school or grad school. I took the latter approach (I lacked your stamina to do both) and it’s a blessing for Mom to be a 22-year survivor and get to know her grandchildren.

    The 22 years has not been without “scanic” attacks, but we are all in awe of people like you and Dr. Charles who devote your lives to treating the beast and helping your patients along in their journeys, however long or short they may be.

  7. #7 potentilla
    June 15, 2006

    The phrases “taken the worst” and “weathered the worst” are unfortunately not appropriate in relation to those who are not metastatic.

  8. #8 drcharles
    June 15, 2006

    Orac,
    wonderful post, you’ve expanded so many thoughts i had while jotting down my bit. what a wicked moment to discover that node. there is so much to detach yourself from or it consumes you. thanks for eloquently sharing your experience, and doing your part in the struggle.

  9. #9 TheBrummell
    June 15, 2006

    Orac,

    Thank you for opening this little window into the world of you and your patients. You write well, and the emotions involved in the fight against this beast are clear.

    Thanks.

  10. #10 epador
    June 16, 2006

    One of the conundrums of oncology is the follow-up visit.

    Do they affect survival? Evidence-based logic continually affects our scheduling.

    Do they increase or allay fears (and thus improve or worsen quality of life)? Am I simply dispelling the fears that preceding the appointment, or deeper ones, after my “clean bill of health?”

    Is it better to have tests done before or after the visit? One cathartic “everything looks fine” at the clinic days or weeks after a scan (the suspense is killing me is more than a literary phrase for some), or a history and physical at a visit [blinded to any technological verdicts], followed by tests and follow up calls or visits?

    What happens after I tell the patient they don’t need to come back to me? Do they feel abandoned or freed? Will their PCM follow my recommendations or correctly interpret early sign or symptoms?

    I don’t think there is one right answer, yet customizing the approach for each patient is a potential trap as well.

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