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Old Mon Jul 8, 2013, 10:37 PM
tom30 tom30 is offline
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Keeping Cancer a Secret

I recalled this doctor being referenced a few times in the forums. Article is from the nytimes.

July 4, 2013, 12:01 am
Keeping Cancer a Secret
By MIKKAEL A. SEKERES, M.D.

My patient came to see me every six months or so with his wife of 40 years, making the five-hour drive from West Virginia, where he managed a few businesses. He had myelodysplastic syndrome, a type of bone marrow cancer that in his case was indolent, requiring only regular shots with a hormone, but no chemotherapy – yet.

While his blood counts were not normal, they were what I used to jokingly call “good enough for government work,” until another patient of mine, who was a postal worker, reminded me that not everyone found that comment funny.

This was a routine checkup, and I always looked forward to seeing him and his wife. When I walked into the exam room, they were sitting quietly next to each other, with books open, members of the cadre of patients and family members I referred to as my “intellectuals.” They both beamed when I entered, like old friends.

“It’s good to see you,” I said, and I meant it.

“It’s good to be seen!” he joked.

We reviewed his blood counts, which were stable, and he had not required any blood or platelet transfusions since I had last seen him.

“I think we achieved our goal of wasting your time again,” I teased him. “Any plans for July Fourth?”

“We’re having the kids and grandkids over for a few days,” he answered.

“How are they dealing with your diagnosis?” I asked.

He shifted in his seat and looked over toward his wife. “We haven’t told them about it yet,” she said.

I was surprised. My patient had been dealing with this serious medical condition for a couple of years, and he was usually so pragmatic in how he managed all aspects of his life. Not telling his children was more than just an oversight. I asked him why.

“Our son has been away, doing a couple of tours of duty in Afghanistan,” he said. “We were going to tell our daughter, but. …” He paused, trying to find the right words. “It wouldn’t be fair, for her to know, to have this burden, and not him. We were planning on telling them when we’re together over the holiday.”

He seemed uncomfortable talking about it, as if their family members didn’t keep a lot of secrets from one another. His illness was a biggie, because his condition could deteriorate at any time. I worried about his support network.

“Have you shared the news with friends?”

He half laughed. “Well, not deliberately. I went to the cancer center to get my weekly injection and ran into one of the people I work with, who was getting chemotherapy for her breast cancer. I hadn’t told anyone about my problem.” He paused. “You know, you don’t want people thinking the boss is sick.”

I asked how they both handled the surprise encounter.

“She had been keeping her cancer diagnosis quiet, so it became our secret.” He thought about it for a second. “It helped to have someone outside of me and my wife know.”

Cancer, like entropy, tends toward chaos. It disrupts the ordered growth of cells, the integrity of tissues and the sanctity of nerves, blood vessels and organs. Cancer is an unwelcome house guest that upends lives and despotically redefines a person’s sense of self, in its own image.

Amidst this bedlam, sometimes the one thing that we can control is whom we tell.

There are a variety of reasons people keep the news of a cancer diagnosis secret. Some are very personal (it’s my body, and what goes on inside it is my business). Some are professional (the screenwriter Nora Ephron kept her myelodysplastic syndrome a secret because she feared that no insurance company would sign off on any movie she tried to make). And some are altruistic (we don’t want others to bear the emotional weight of knowing).

My patient continued: “I also didn’t want to tell the kids until I could better comprehend what was happening with my disease, so I could show them that one plus one adds up to two, not to some other number. I feel like I know where things are going now.”

Sometimes, people don’t talk about their cancer because they haven’t made sense of it themselves. It’s our job, as doctors and nurses, to be deliberate in asking our patients how they will explain their cancer to others, to make sure they understand. Keeping such a diagnosis hushed, a secret from those who love and care for us, is an unfair burden we shouldn’t allow cancer to dictate, too.

He sighed, looking almost relieved as he pictured finally being able to share the news with his children, and nodded his head. “It’ll be good to let them know.”


Dr. Mikkael Sekeres is director of the leukemia program at the Cleveland Clinic.
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Tom- 59 yrs old, dx-eosinophilic fasciitis 2004, 1 yr prednisone resolves EF- now low counts, HGB has been ok... EF has been associated with MDS along with AA.
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