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I've heard many a discussion about the ways people got their news. Some people are told over the phone and are upset at the impersonal nature of the method, and some are called to the doctor's office, already knowing something is terribly wrong, that it's probably cancer, and then having to go through the agony of waiting for the appointment, driving to the office, sitting in the waiting room.
I was told immediately after my sonogram by the radiologist. I was already sure I had cancer, so was grateful to have it confirmed that quickly. It's relatively unusual to be told that way - radiologists like to be certain and the common saying is "until the cells are on a slide, you can't be sure." However, I think in some cases an experienced radiologist can be sure - and my radiologist was.
After he sent the pathology results to my primary care doctor, I called to find out what kind of cancer I had. He told me it was invasive over the phone - which again, I was grateful for. He faxed the results to me and I was able to study the terminology before meeting with a physician to discuss my treatment plan.
To me, the hardest part of this disease is the uncertainty and the waiting. Finding out the way I did meant I had time to get over the shock before I met with the breast surgeon. I could google, I could read books, I could find other cancer patients and educate myself a little. When I finally sat down with my breast surgeon, I had some knowledge and had better questions to ask than "Um.....are you sure?" I wasn't wasting his time, or mine, by being stunned and trying to absorb the news and come up with an intelligent question when I knew so little about the disease.
Some people though, seem to prefer to be called into the office and told in person. They need that comforting authoritarian presence, the feeling that somebody cares. I have heard many people say that they find it cold to be told over the phone.
Oddly enough, most of these people also say that they were in shock after hearing the news and didn't absorb much of what their physician told them. But, they did feel better about being in the presence of a doctor, even though they didn't have good questions to ask.
Some have said that they thought the physician who told them rushed through the news and looked bored. I've heard stories of doctors looking at watches and around the room while they tell somebody they have a serious illness.. Everybody remembers where they were when they heard Kennedy was shot, or when 9/11 happened - those of us who had cancer also remember forever the moment we got the news. So, if you are a doctor who is easily distracted or has a habit of checking his watch every few minutes, I suggest you not during this particular conversation.
I think the best way to make everybody happy would be to ask the patient when setting up these tests. "Okay, we have to do a diagnostic sonogram and mammogram on you - if the results do come back malignant, how would you prefer to get the news - by phone or in my office?" I think that would cover it and make everybody happy.
Except of course, when you get that call to come in - you know what it means. So, unless you want to go in to hear "nothing is wrong" I guess there really is no perfect way.
How did you get the news, and are you grateful at the way it happened, or did it upset you?
A quick note and apology; I'm sorry I have not updated this blog as frequently as I have in the past. I started my new job and it's been an exhausting, but exciting, adjustment. I'm still dealing with tamoxifen side effects, so by the time I get home, I'm just ready to rest or sleep. However, once school starts (next week) and I get in a rhythm, I'll be back too my old ways and frequent updates, so please bear with me.
These are moments you never forget. The first time I was told I had cancer, I was 19 and lying in post op. The surgeon came in and as I woke up told me that what I had in my neck was not a goiter but a tumor - thyroid cancer.
ReplyDeleteThe second time I was told on the phone after a biopsy. I was sitting on the bed holding my husband's hand.
So I have had this both ways. Personally it was not how I got the news, but what the news was. It sucked. It was life changing. The first time I was 19. The second time I was 45. There was no difference.
My only real thought on this is that doctors should make sure the person they are telling is not driving while they receive the news.
I feel bad for doctors, too, for having to give people horrible news. And you're right, some patients prefer to find out over the phone, and others prefer to be told in person, and there's no perfect system for how to do it. For me, it has more to do with the person delivering the news, than the method of delivery.
ReplyDeleteThe surgeon who did my biopsy has EVERY pt come to his office to hear pathology results, whether benign or malignant. This way, patients don't automatically panic when they have to go into the office. But the radiologist was "98% sure" my lump was benign, and then during the biopsy, the surgeon said he was "99% sure" it was benign... so when I went in to hear the pathology results, I wasn't at all worried. But when I entered the room and the surgeon wouldn't look me in the eye, I KNEW. It was a tremendous shock to hear him say the “cancer” word. On the one hand, I'm glad I didn't find out over the phone. On the other hand, his bedside manner sucked, so finding out in person wasn't much better. I was crying, shaking, numb, etc., and he never once attempted to comfort me. He droned on and on about the facts, and I didn't hear a single word he said. He didn't offer me tissues, or say anything like, "I know it's scary, but it will be okay" - he was just such a robot. I managed to say through my tears, "I'm sorry, I'm having trouble processing what you're saying. Can you just tell me the next step?" But he couldn't. He just kept rambling, and I continued not being able to hear. I heard him say something about "...radiation every day for 6 weeks...", and I started crying even louder. Looking back, I wish that instead of spending 20 mins rambling about whatever, he could have just said something empathetic to address my emotional state, and sent me home to get support from family and friends, with a request that I call him when I'm ready to talk more. Really, there was no need for him to get into the details of radiation therapy a mere 30 seconds after dropping the cancer bombshell on me when I was outright sobbing.
I immediately found a new surgeon. And she is AMAZING. She handled the "bad news conversations" completely differently. When she called to tell me that not only were my margins not cleared, but the area of DCIS was much larger than it had appeared on imaging and I might want to consider mastectomy, she was so sweet and caring. She gave me little bits of info and then waited for me to respond. If I asked a question, she answered it honestly and fully. If I just clutched the phone and couldn't say anything more than, "Hmm. I...uhmm. Uh...", she just patiently waited in silence, giving me space to process and breathe and think. She got off topic a bit and asked me about my cat, and we chatted briefly before returning to the difficult topic of whether or not I should have a mastectomy. I so loved it that she didn't ramble just to fill the silences - she really LISTENED to me, and followed my lead. She stayed on the phone with me for a good 15 minutes, and said all kinds of comforting things, and assured me that I could take time to think about things and there was no rush to make a decision. She told me I could come to her office anytime, or email her, or call again, and that she'd talk with my family, too, if I/they wanted. I am SO grateful to have her. She's so good at breaking bad news in a gentle and supportive way that when I was waiting to hear from my oncologist about the results of my Oncotype dx test, I actually emailed my surgeon to ask if SHE could give me the Oncotype news instead of my oncologist, because if it was bad news, I'd handle it better hearing it from her! (But it was good news :))
I was getting the results from a MRI of my lower back and the back doctor ended the appointment by saying "oh by the way it looks like you have a Tumor on your ovary that you should get checked out". Needless to say I heard nothing after that statement. I had the growth not tumor removed and all was fine. Also found a new back doctor.
ReplyDeleteJudi G
Sometimes it's not the dr that is lacking in sensitivity. Sometimes it's the patient!
ReplyDeleteMy husband and I had been waiting for results over the long Thanksgiving weekend and were getting rather anxious. Monday, still no word. Tuesday morning I was driving on my way to the pathology lab to pick up biopsy report myself when my gyn dr called my cell phone. I suspected what I would hear (all reassurances of "it's likely benign" to the contrary) so I pulled over to take the call. "I'm sorry... you have breast cancer." My dr sounded very apologetic. Then I picked up my path report and headed to the appointment I had previously made with the oncology surgeon.
While I was waiting to see my dr I texted my husband-- yes, I really did-- "It's cancer." Bless his heart. Then over lunch the same day I told him I wanted a double mastectomy and surgery was scheduled for the following week. I'm afraid he was not nearly as prepared for the news as I was.
I think I did a slightly better job telling our kids that evening. We had just lost a friend from church-- a mom with kids the same age as our teens-- to a sarcoma two weeks before. So I knew to approach the issue with sensitivity. Why I thought I should just spring it on my husband I'll never know!
My surgeon does the phone call method which I really prefer. I was able to process it at home, get the crying out of the way and start researching. When I went to the appointment I had my list of questions and felt strong and ready to get down to business. He's an awesome Dr and for both the DCIS talk and then, after an MRI biopsy, the IDC talk he spent 2 hours with us. He explained everything step by step very thoroughly and answered every question we could think of.
ReplyDeleteI was in post op. Doped up. The doctor came in and began talking about what they'd done. I said, "So, was it cancer then." and he hesitated and he said, "Yes. It was." Since I'd already begun to believe that it was, this did not come as a surprise to me. I thought (said?) "Okay," and then I went back to sleep.
ReplyDelete