Friday, March 18, 2005

The deadly power of denial, part 4: Denial isn't just for patients

I thought I wouldn't be continuing this series any more, having more or less mined my thoughts about patient denial of a diagnosis of cancer until (I thought) nothing was left. In my first post on the topic, I described breast cancer patients who presented very late, with huge, bleeding, fungating tumors, yet had somehow managed to hide them from their family, sometimes for years. (Update: Sadly, one of the patients described in this post, unfortunately, has large volume metastatic disease in her bones.) In the second post, I described a patient for whom denial was really a way of "not wanting to be a burden" on anyone. Finally, in my most recent post on the subject, I described how what seems to be denial can in reality be fear of surgery or other necessary treatments. (Update: This patient in this anecdote underwent surgery and has done quite well. She is now preparing to undergo radiation therapy.) After that, I didn't see any further purpose in beating this topic to death, and I didn't want to risk my commentary degenerating into the trite or even into the realm of self-parody. I thought it was finished. Done. Time to move on to other topics.

Then, as Michael Corleone said in the Godfather, Part III, "Just when I thought I was out, they pull me back in." ("They" being patients, of course.) [As always, details about patients and how these events happened that don't affect the core of the story have been altered.]

It all started when I got a phone call from the nurse practitioner who worked with one of the oncologists. It was about patient whom I had operated on nearly three years ago for an early stage breast cancer and hadn't seen in about 18 months. This patient was a relatively young woman (under 40) who had had multifocal node-negative disease that had required a mastectomy with immediate reconstruction. She had undergone postoperative adjuvant chemotherapy without too much difficulty and had been doing well. From what I could gather, this patient had called the oncologist and was very concerned about a palpable "gland" that had popped up in her neck. Normally, in a cancer patient, such an observation would make us all think, "Uh-oh," but the story was complicated by the additional history that she had recently had an upper respiratory infection and not long before that, dental work. Neither the nurse, nor the oncologist, nor I was particularly concerned (at least not yet), although the nurse was asking me if I could see the patient that day. I told her that, unless it was an emergency (which it clearly wasn't), I couldn't see the patient because it wasn't my clinic day and I had surgeries scheduled later. In fact, I even suggested that, given the upper respiratory infection, this could easily be a reactive node and that she should perhaps wait a couple of weeks to see if it resolved as her infection resolved. None of the medical staff seemed to have any problem with that recommendation, as it was medically appropriate, and the patient was told that we would see her next week.

That was all very well and good. Very reasonable and medically appropriate. But we sometimes forget that, if you're a patient who has survived cancer, lurking in the back of your mind is a dark fear, fear that the monster that you had thought banished from your body may in fact have never left and may one day return from the hidden places in your body where it has been lurking, biding its time and waiting for a chance to re-emerge and strike again. That fear is always in the back of a cancer patient's mind. Time may diminish it, but it never goes away completely. Cancer patients, even the ones who are fortunate enough never to recur, carry that fear to their graves. Whether the monster is truly gone or not, fear of the monster remains. As health care professionals, intellectually, we may know that this feeling exists in our patients, but we don't feel it viscerally as the patient does. It doesn't wake us up at night in the dark hours late at night when we are alone. We don't worry about who is going to take care of our children if the monster returns.

You can probably see where this is going. The patient was persistent. I, of course, gave in, and saw her early on a Monday. I went into the exam room still thinking that this was probably just a reactive lymph node from her upper respiratory infection, that I could reassure the patient by doing a fine needle aspiration to show that there were only lymphocytes in the node, no tumor.

Then I examined her.

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. Why had I not accepted more rapidly what the patient had been trying to tell all of us? Why had the nurse been so willing to agree with me? I can't speak for anyone else but me, but I suspect it was because neither of us wanted to believe that a young woman who had been apparently successfully treated for a "curable" cancer was not, in fact, cured.

Denial isn't just for patients, you know. Doctors can feel its power as well. I'm not sure if that's what was going on in this case, but in retrospect there probably was an element of denial in my initial reaction. I just didn't want to consider, at least not as the first explanation, that my patient's cancer had recurred, and that I was powerless to do anything about it. The surgery had gone so well; she had had an early stage cancer. She had tolerated the adjuvant chemotherapy quite well. By all expectations, she should have had a very high chance of living to a ripe old age. Also, the most likely explanation was that this was a reactive node, given her upper respiratory infection, and treating it as though that's what it probably was was not wrong. Waiting was not the wrong thing to do, and, in reality, even if we had waited two weeks to make the diagnosis, it would not have made any difference in her medical prognosis. In fact, part of me almost thinks that it might have been better for her if she had let us persuade her to wait.

At least then she would have had two more weeks during which she could at least have the hope that the monster hadn't returned.

In this case, though, the patient knew better. Now I know better as well. The patient may not always be right about her disease, but she often is. In the future, I will try to listen better.

9 example(s) of insolence returned:


At 3/17/2005 11:59 PM, Blogger Dreaming again said...

It's not an easy thing to be right sometimes.
There have been times when Dr.s have told me that I've got nothing to worry about, or it's stress, and I've wished and prayed they were right ... stress & depression is certainly much preferrable than myasthenia gravis ...

This story reminded me of when I had a portacath put in for IVIG treatment and my arm swelled up. My home health nurse called the doctor and told him, that my arm was swollen and mottled. (I think that was the word she used, purple spotty colored) and he talked to me, told me he didn't think it was anything at all, but he didn't want me to worry, so, just to reassure me, he'd meet me in the ER. He walked in the room, and the instant he walked in, I knew something was wrong.The expression of shock on his face that he took a second to control was unmistakeable. I had a blood clot in the port.
He felt TERRIBLE for having thought everything was OK.

I think I felt worse for him, than for me.
He learned from it, because he's a caring doctor. I know, you will too. You were both right in your over the phone statements. Your diagnosis, for the given situations were right.
Sometimes, it just really sucks when we the patients are right.

 

At 3/18/2005 4:41 PM, Anonymous Anonymous said...

What is it with doctor's and blood clots? They never want to believe you have them. Positively weird that my clot was from a port as well, and guess what? I get IVIG too. They assure me there is no connection. My clot was in my superior vena cava and it took about 7 months to dx. My most trusted doctor was in denial that I had anything that serious going on. He talked me out of getting a 2nd MRI that would have shown the clot in my chest. He later told me he did not think that I could have had yet one more major thing going wrong. Clear denial.

 

At 3/18/2005 5:49 PM, Blogger Dreaming again said...

This was less than a week after insertion. It was put in on a Tuesday, and this was the following Monday.
He would have pulled it right out, but I'd gone into myasthenic crisis when he'd put it in and preferred to use blood thinners instead thinking that would help. After fighting with the port for 9 months, we replaced it. The second port gave us no trouble.

This doctor no longer questions anything about me LOL he didn't expect me to go into crisis on him with the port insertion either. His wife has MG and she'd never had any problems ... he now just looks at possible complications with me and assumes they are going to happen and is pleased when they don't.

I hope you don't struggle with the IVIG side effects I did. I hated that stuff!

 

At 3/19/2005 12:06 AM, Anonymous Otterdoc said...

What ifs keep doctors and patients up at night without discrimination. I think we all wonder about the worst and best case scenario even when we'd prefer to be optimistic for (or as) a patient. Compassion helps us talk about the easy things first. Good training and sound reasoning prompt us to do the homework to find out for sure.

-Otterdoc

 

At 3/19/2005 5:21 AM, Blogger gaw3 said...

Thanks Orac for your post.

g

 

At 3/19/2005 12:12 PM, Blogger The Lioness said...

I am new to your site, and am enjoying it immensely. I'd never thought of doctors choosing denial as a strategy as well, so thank you. I'm in vet school and I will never forget this. Just so you nknow, you might have performed a public service - really.

 

At 3/20/2005 3:27 AM, Blogger Dreaming again said...

Hey Orac ...do me a favor ...don't discontinue this series. I'm sure you have tons of these stories to tell ... they're important. They keep me and other's thinking.

 

At 3/23/2005 2:56 PM, Anonymous Anonymous said...

My mother died of pancreatic cancer because of denial on the part of a doctor. Or, maybe, just refusal to listen to and believe a patient. For a year, he kept telling her that her problems were all in her mind, or just "female troubles."

That explanation became obviously wrong when she showed up in his office with jaundice. By that time, it had metastasized and was inoperable. She lasted five months after that.

There was a time when I dreamed of meeting him in an alley.

- wheels

 

At 5/27/2005 10:50 AM, Blogger Maggie said...

Hello Orac,

Just found your blog and am reading backwards. I think your series on Denial is fantastic. You are very obviously a great doc who is trying to continue learn from your experience (get the feeling some docs just give up on that after they qualify). Thank you for saying you will "listen better". As a patient (though not a cancer patient touch wood) I can tell you that is what I want. I am lucky with my General Practitioners (not sure what they are called in the US, Family Practitioner? Primary Care Physicians?), they do listen and have always tried their best to help me and my family. But I have heard plenty of stories from folks whose docs just do not listen.

Competing Interests: Patient with CFS/ME, also known as CFIDS in US. Only child of two elderly (85 and 86) and infirm parents, Mum with diabetes and hiatus hernia, Dad with "generalised ischaemia".

Thank you for your blog, look forward to reading more!

Best wishes from Liverpool, UK!

 

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