Musings of a Dinosaur

A Family Doctor in solo private practice; I may be going the way of the dinosaur, but I'm not dead yet.

Sunday, December 31, 2006

The Hardest Conversation - Part 2 (The "C" Bomb)

Dr. Blog has a discussion about this New York Times article. He advises us Primary Care types: wait until they are 150% sure of the diagnosis before breaking out the ‘C’ word. One can find onself neck-deep in fear, tears, wadded-up tissues and hard questions in a very short period of time after saying it. The ‘C’ word tends to turn off rational thought and turn on the “white noise of emotion” machine at 110 decibels. You can’t take back the ‘C’ word very easily.
I understand that this is a pediatric oncologist talking, so the situations he is addressing are very different from what I encounter in practice. Nevertheless, I understand the principle behind this statement and, in general, I agree with it. On the other hand, I have "broken" this rule on occasion, fully aware of what I was doing, because of a carefully thought out rationale that effectively accomplished what I wanted to do: provide the best possible care -- psychological and emotional, in this case -- for the patient.

A patient in her late 50's came into my office complaining of upper back pain, and two small lumps "on" her right breast. I had last seen her three years earlier for a checkup, at which time I suggested she have a routine mammogram. She hadn't.

The entire right breast was replaced with a locally advanced, stony hard, obvious carcinoma. The two "lumps" the patient was referring to were areas where the tumor had broken through the skin. She had large nodal masses in both axillae, as well as the right supraclavicular area. My strong suspicion (which turned out to be correct) was that her back pain was from bony metastases.

Now technically speaking, because I didn't have a tissue diagnosis, I couldn't be "150% certain" that it was cancer. Except that it was. It was like coming across a guy from a motorcycle accident with his leg bent mid-femur and telling myself that I couldn't tell for sure his leg was broken if I didn't have an x-ray.

I stepped out of the room while she dressed and collected my thoughts. I went back in, pulled my stool up next to her chair and took both her hands in mine. I held them tightly for the remainder of the visit, and began by saying, "This is cancer." She didn't freak out, because obviously she had had a pretty strong suspicion from the start. I went on to tell her that we needed to find out just what kind it was, what cell types and receptor status we were working with, because that would determine treatment. We also needed to find out exactly how much it had spread.

I told her that it was very possible that this is what she would die of eventually, but that I had no idea how far in the future that might be; she might live 10 or even 20 years more with treatment. (I did not say she might live as little as six months, partly because I really didn't have enough information to come up with a meaningful prognosis at that point, but also because even though I was telling her she had cancer I was specifically trying to give her hope.) I also told her -- several times -- that whatever happened, I would be there for her and for her family, whatever happened. I wasn't going anywhere; I wasn't going to be afraid to talk about dying, if that's what was going to happen. She was not going to be abandoned.

Here was my thinking: There was no doubt clinically that this was a malignancy. By coming out and saying so directly, I was removing the uncertainty of "maybe it isn't cancer" and letting her get through the 110 decibel "white noise of emotion" machine now; here; with me, instead of a surgeon she'd meet once before the biopsy and once afterwards, perhaps as much as a week later, "once the pathology report is back" (in order to be 150% sure it was cancer.)

I believe that my approach put her in a much better position to hear what was being said when it counted: when those vital reports came back. Having had the several week lag time it was going to take to complete the diagnostic work up to adjust to the idea that she had cancer, when talk began of chemo and surgery and radiation options, she wouldn't also be dealing with the shock of the "C" bomb.

It worked. At least, she told me that it worked. I got her hooked up with surgery for the biopsy and oncology for the metastatic work up (which showed tumor in her upper thoracic spine; right where her pain was.) Her wonderful oncologist (the same one who so thoughtfully sent me this) told her that chemo first was the best option, with further treatment dependent on her response.

It's been well over a year. (Perhaps even two; I'd have to check her office chart.) She's responded amazingly to her chemo. All her tumor masses have shrunk drastically, and she hasn't even had any surgery yet (except the initial tiny punch biopsies the surgeon did in the office.) She feels great. Her back doesn't even hurt anymore. She looks wonderful (she has a great wig.) Her son had twins; she just helped them celebrate their first birthday, and she is looking forward to the birth of her daughter's second child. This lady has metastatic cancer, and although "cure" is not an option, she is certainly not "dying" at this time.

There is such a thing as compassionate honesty. It can even include the "C" word.


At Mon Jan 01, 12:44:00 PM, Blogger Sam Blackman said...

Thanks for the perspective from your side of the fence. I agree that some things are so obviously obvious (e.g., the clearly pathologic breast masses you descreibe) that to say, "Well, it might be cancer ... we'll just need to run a few tests ..." could make a primary care doc seem obtuse. In our (pediatric) universe, with the majority of cancers being leukemias, it's the abnormal CBC (+/- diff) that raises the red flags, and as you know, there are many things that cause leukocytosis or leukopenia in kids.

I recently was on-call and received a phone call from a frantic pediatrician regarding a child with a chromosome deletion syndrome (one, it turns out, happens to be associated with acute lymphoblastic leukemia) who had a CBC showing a low WBC, normal platelets, a mildly lower hematocrit and 100 nucleated RBCs. She called me convinced that this was leukemia and my first words to here were, "Don't use the 'L' word yet! You need to repeat that CBC ('cause it didn't make sense). She did and it turned out that the hematology tech had keyed in the NRBCs wrong - there weren't any. The leukopenia was due to viral suppression and the kid didn't have cancer.

In any case, as with all of medicine, it is the rare statement that fits all situations equally. Rules of thumb are just that, and I always appreciate hearing the exceptions to the rules (they're always more interesting).



( Just an FYI, it's Blog, MD and not 'Dr. Blog'. I appreciate the link nonetheless!)

At Mon Jan 01, 02:50:00 PM, Blogger Medicine Man said...

I think you did right, and I commend you for you courage to approach this woman the way you knew you should.

I'm a young doc, and have diagnosed far less patients with cancer than you have, but each time I felt quite sure I knew what they had. Three of these patients had lymphoma. For each one I had a very strong suspicion the minute they described their symptoms to me or after I did the physical exam, but each time being young and not wanting to "freak" out my patients told them that further work-up was needed to be sure of what their symptoms my be. My first diagnosis in private practice was a young man, first time in the practice and first time seeing me, with a painless left-sided supraclavicular lymph node noted during a routine physical exam. The patient was otherwise asymptomatic. That was the first time I had felt one that was real, and I'm sure being green my sense of surprise and foreboding during this routine check-up may have not been well-disguised. This patient was a difficult case, because he felt well he didn't want to believe he had cancer, even though the subsequent CXR and CT scans and tissue biopsy confirmed a wide-spread lymphoma. The patient went for several second opinions, then unfortunately, I changed practices and lost track of him (after many non-returned phone calls). I was honest with him and coached him through the process best I could, but it made it no less easy for him. He expressed no emotion during his follow-up visits with me, but I knew he was hiding it inside. I can only hope he finally sought care after several oncologists confirmed the same diagnosis.

The other times I've had to diagnose cancer I was slightly older and hopefully wiser and trusted my instincts in how to approach the situation. It's easier when it's not a new patient that still doesn't have trust for you as a physician.

There is no easy way to have the "C" conversation, but above all, a physician should trust his or her own instincts on when to have it. One thing is a blood test (which could be erroneous), but another thing is a clearly palpable mass on physical exam and a history that supports it.

At Mon Jan 01, 11:31:00 PM, Anonymous Anonymous said...

Dr. Dino, that kind of honesty is exactly what I would expect from my physician. A bit over a year ago, I had what was my 3rd cancer scare ... which was less than a year before my first.

My PCP simply told me over the phone that he wanted me to see a specialist ... my nephrologist, who had ordered the tests to begin with, never even contacted me ... but the "specialist" I was sent to was wonderful. He told me plain out what he suspected, and now I still wish that he were a PCP I could see for everything - instead of a specialist.

I know that not all of your patients want to know everything ... but some of us do, and those of us who do appreciate honesty.

Perhaps physicians could add a new field to their information gathering on new patients: "How much information - how much detail - do you want the physician to share with you about your condition?"

Wish you were closer by ...

At Mon Jan 01, 11:31:00 PM, Anonymous Anonymous said...

By the way ... Happy New Year! :o)

At Tue Jan 02, 02:25:00 AM, Blogger Judy said...

The gastroenterologist who performed my first colonoscopy woke me up with a photograph of my tumor and the diagnosis of cancer.

My response? I refused to believe him. I had the evidence in my hand, but I was absolutely going to wait for the biopsy results. And hunt on the internet for all the information I could find on colon cancer.

I made the appointment with the surgeon and scheduled the surgery -- all while denying the possibility that I could have cancer. I needed the time to adjust to the reality of my situation, but I also needed him to be totally honest with me so I could focus on denying that reality rather than worrying myself sick about the possibility of cancer.

Funny how that works. If you DON'T know, you worry. If you do know, you can deny what you've been told. Clearly you made the right choice in telling your patient what you knew to be the truth. So did my gastroenterologist and he'd only just met me while you had the relative luxury of actually knowing your patient.

At Tue Jan 02, 12:20:00 PM, Blogger Pieces of Mind said...

What an excellent post.

The words "lymphoma" and "probably malignant" were used with me at the time of my dx but the C word was not.

Although I had no trouble grasping what was going on, I wonder if someone else might have been left in some confusion, not really sure if this was cancer or something else.

I think there is a tendency for everyone to tippytoe around the conversation. A lot of details, including my CT scan pictures and the fact that I had developed SVC syndrome, were not shared with me. I don't know if they thought it would be information overload, or if they figured I was just too sick. I understand their logic but in some ways it felt like they made their own decisions about how much information to share, without asking me first, "Do you want to see your CT scan pictures? Do you want copies of your medical reports?" This wasn't their decision to make; it was mine.

I think it's critically important to find out early how much the patient knows and how much he/she wants to be told. And I also think it's incumbent on patients to launch these conversations themselves, if they can. I take some of the responsibility for not doing so, although in my defense I was very sick and there initially were a lot of specialists involved without much continuity. I learned a lot of stuff by being a cancer person and next time I will do a few things differently.

Society can be a co-conspirator too, unfortunately. My dear sister-in-law learned last week that her mother is in kidney failure. Mom is in her 80s and is clear that she does not want dialysis or aggressive tx... and the family agrees with her decision, but they're being undermined by well-meaning friends who think they're "giving up."

We all process this stuff in different ways and at different rates. It is not easy, and denial can be deep. All I can say is keep talking about it. You never know how many people are out there, dying to talk but afraid to bring it up for fear of upsetting and alienating their family, their friends and their health care team.

Happy 2007!

At Tue Jan 02, 05:35:00 PM, Blogger Richard A Schoor MD FACS said...

Terrific posts and terrific comments. Telling a person they have cancer is among the most difficult, unpleasant, and important things that we do. Doing it well comes from experience and compassion and knowldege. Sounds like you did it well.

At Sat Jan 06, 01:36:00 AM, Blogger SeaSpray said...

You sound like such a good and compassionate doctor. Your patients are blessed to have you.

I have an aunt who was diagnosed with cancer this past September. She is 68 and never went for a breast/gyn exam. She had a lump for over a year and finally when her breast started bleeding did she seek help. She was a direct admit into the hospital and tests revealed that it had spread to her neck and groin. Surgery not possible because there wouldn't be enough skin to close.

The good news is that she is one of the tens of thousands of people who are responding to a new chemo drug. Everything appears to be reversing and she is getting good reports. We are optimistic. It is so good to see her smiling again!

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