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Do you prefer receiving medical news via a phone call or in person

How Did You First Hear the Words, You Have Cancer?

Upon reading a recent @BCSM post about results obtained in a research survey in which breast cancer patients were asked how they preferred to hear news of their cancer diagnosis and other ongoing medical information and/or test results (thank you, @BCSM, for wanting our input), I started thinking more about this and wondering how YOU received the news about YOUR cancer diagnosis. Did you hear it in person? Did you hear it over the phone? How did you “want” to hear it and were your wishes honored?

Without a doubt, I prefer hearing unpleasant medical news over the phone. I would much rather be at home. This way I don’t have to worry about the right way to act or the right things to say. Plus, I don’t have to fake it and put up a brave front pretending to not be scared shitless. I prefer not to have the face-to-face discussion about bad news immediately. I like to be in the privacy of my own home, give things a chance to sink in, allow myself time to absorb it and fall apart in private if need be, and then talk with my doctor later when I am more ready and hopefully able to think more clearly.

But that’s me. You might feel entirely different.

The day I heard those words, you have a cancer, I was home alone with my dogs. After my Tuesday biopsy, I had been told I would get the results on the following Thursday. This is what the doctor dear hubby and I had originally met with to discuss my highly suspicious tumor had told us. He said he’d call me himself. I believed him. Why wouldn’t I?

That Thursday arrived and I spent the entire day waiting. And waiting. You can read the details of that day here or in my memoir.

Finally, when I could no longer stand it, I called my doctor only to find out he had left for the day. WTF? He just went home to have a nice quiet dinner with his wife and kids?? I never saw or heard from that particular doctor again.

Instead I had to pry the words out of a different doctor who really didn’t want to tell me, which in hindsight is understandable. After all, I wasn’t his patient. I read the notes via my patient portal (yes, you can read all kinds of interesting things about yourself if you have access) that he had written about our conversation that day. He called me angry. Hell yes, I was angry. I think I had a right to be angry. I was waiting to learn if I had cancer or not for crying out loud. And no one called me as I had been promised.

Who in her right mind wouldn’t be angry?

But the point of this post is that it’s probably a good idea to talk with your doctor(s) about how you’d like to receive bad, or good for that matter, medical news. Doctors are not mind readers after all. If you’re like me, you might prefer getting test results over the phone. If you prefer a face-to-face conversation, that likely can be arranged.

Your needs and wishes should come first.

If you are a doctor delivering news (any kind) over the phone, I would suggest when you do make that call, to first ask your patient this simple question:  Is this a good time to talk?

I received a bad-news-sort-of-call from my oncologist during the holiday season while I was Christmas shopping at the mall. Granted, I should not have answered my phone without first checking caller ID, but I assumed it was dear hubby or one of my kids. Wrong. I also should have told her it was not a good time for me to talk, but I didn’t think of that at the time.

Trust me, the mall is not the ideal place to hear distressing news.

Bottom line is, there is no perfect time or perfect way to receive tough-to-hear medical news. But your needs and preferences should come first. Your wishes should be honored whenever possible.

After all, you are the patient and what you want matters most, or at least it should.

But first your doctor needs to know what your wishes are and it’s up to you to let her/him know what they are.

How did you first hear the words, you have cancer?

Do you prefer to hear medical-type news or test results via a phone call or in person?

Does you doctor follow your wishes?

Featured red phone image via NATE STEINER/FLICKR CREATIVE COMMONS

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This was my journal entry "that day."
I received the news via a phone call. This was my journal entry “that day.”

 

 

 

30 thoughts on “How Did You First Hear the Words, You Have Cancer?

  1. I first found out about my cancer over the phone from my primary doctor. It was just after Labor Day 2014, I had had the biopsy the previous Wednesday and hoped to know by Friday but no such luck. My doctor called me on Tuesday evening and apologized for letting me know that way, and for there having been a prolonged time period before I found out, but I told her it was okay, it was a holiday weekend and Monday was the holiday and couldn’t be helped. She really hadn’t gotten the report until that day. She was very supportive and said she’d set me up right away with a surgeon and oncologist and she did. If she’d have told me to come in and we’d talk about my results, I’d have guessed anyway, so I was okay with her telling me over the phone. And it is like you said, Nancy, it’s best to be home, my daughter was right there listening to the conversation and she guessed the outcome. For me it was harder learning over the phone that I had to have the chemo before the mastectomy, because I had it set in my mind I’d have surgery first, but the breast MRI showed them I needed chemo first to try to shrink the main tumor and any small out shoots from it. It did turn out later that I had some positive lymph nodes so I suppose that was best. This news came from the nurse at my surgeon’s office and I remember her telling me I’d have to do the chemo soon and she would set up appointment with an oncologist to get me on a schedule. I dreaded the chemo more than the surgery, if you can believe that, I just wanted that offending cancerous breast off! The nurse was very matter-or-fact, she told me the straight facts but really showed no sympathy or callousness toward the news. Later I got to know her better and she said she has to get right to the point when she makes these calls and if she’s met the patient previously she gauged how they might take the information. But I do believe how your doctor tells you, how sympathetic and supportive he or she may be is the key to how you react to the bad news. Frankly, when they ordered a biopsy, and even at the mammogram, I pretty much knew the truth, because I knew something was in there,so I had buffered myself ahead of time. Some women are taken completely unawares and that has to be hard.

    1. Barb, Gosh, that was a long time to wait! You were very understanding about that I’d say. I totally understand your dreading chemo more than surgery. I felt the same way (wrote about that in my memoir, btw). And yes, sometimes those in the medical field can sound way too cavalier about these things. I agree that having a empathetic and supportive doctor can have a direct impact on how you handle the news, at least initially. Thanks so much for sharing.

      1. One thing I have to add about being told, when I had my mammogram/ultrasound, the technician was quiet about what she was seeing, and this was telling for me. She had a doctor on site look at the results and she told me I needed biopsy. The nurse who showed me out told me not to worry, it might be nothing, but I could tell they thought it was something, after all, they had seen lots of mammograms. They are not allowed to tell you what they think just from looking at ultrasound or mammogram. However, last fall, I went back for yearly mammogram on remaining breast. As far as I could tell, nothing was going on here, but you never know. After the mammogram, they have you wait in a little room to make sure they have what they need. A doctor came out and called me into a room and I thought, oh boy, but then she told me my mammogram was clear, and she thought I’d want to know as soon as possible given my previous diagnosis! I didn’t think they would tell you then if they thought it was okay, but they did. I thought it was considerate of them at the breast center to tell me it was okay right then rather than wait for my doctor to call days later. So I guess if they don’t see anything suspicious on your mammogram they will sometimes tell you the good news before you leave.

        1. Barb – I had the exact same experience this year when I had my first mammogram on the remaining breast. They also had me wait while they read it and told me shortly thereafter that it was fine. I still got the letter in the mail later but at least I didn’t have to wait to find out. Whew!

  2. This is off the breast cancer topic but the doctor who did my exam for colon cancer asked me to wait for him to see me and my wife after the procedure. He was very kind and in a caring tone told me the picture he had taken was definitely a tumor and thought we should know right away. I much prefer this to the usual announcements that come by phone or letter to us rural people.
    Of the hundred medical people I’ve dealt with regarding my heart, COPD and now cancer I’d guess this doctor was one of only four that noticed I was there in person while they “worked on” my faulty body.

    1. Scott, In your situation, that was the best way to receive the news, in person and right after the procedure. Of course, sometimes the news can’t be given that quickly since test results can often take a few days. Thank you for sharing what you prefer and what your experience has been.

  3. Your entry sent me to this thread (posted by moderator Greg Pierce) on WhatNext, whose title speaks for itself:
    https://www.whatnext.com/questions/someone-told-me-that-they-were-give-the-results-of-biopsy-and-told-they-had-cancer-over-the-phone-while-driving-down-the-highway

    Part of my response to Greg’s post was, “I was told over the phone, but I was at home. My GP called me and was very brief — something along the lines of, ‘They found cancer.’ The first words out of my mouth were, ‘What stage?’ (I had no idea it would take time to find that out.) The rest of the call was my GP telling me to come in as a walk-in rather than make an appointment because she could see me sooner that day. I drove about 15 miles to her office; she handed me the pathology report and told me what it meant. She said the next step was to talk to a surgeon and was ready to make a pre-surgical consult appointment for me then and there. I told her I wanted to do my own research and asked her how long before she needed a decision from me.”

    My diagnosis did not really come as a surprise, though I’d been hoping for better news. I had gone through a month of testing by that point, from screening mammo to diagnostic mammo, ultrasound, and biopsy. I had time to ponder the idea that my tumor might be malignant. Given those circumstances, I think I had been informed in the best way possible.

  4. I’d had my breast ultrasound with biopsy, and the radiologist and his tech both figured it was a lipoma , fatty tissue, since it really didn’t look suspicious at all. I got my call the next night from the nurse practitioner who had ordered it when I had gone in after finding the lump. No lipoma, dang it! Mucinous adenocarcinoma. I’ve been very fortunate in that I had a bilateral mastectomy, and didn’t need chemo or radiation…Yayyyyy! I found this site because my oncologist wants me to take one of the “anti-hormone” pills. I had read so many negative comments that I wanted to learn more. I still don’t want to take the pills. They’re sitting on my counter in the bathroom in their bag. I feel good now and really hate to take something to make me feel bad. Back to the getting the news. I appreciated the phone call, and being at home. I worked for gynecologists for many years, and although at first I thought it impersonal to tell patients bad pathology reports over the phone, the idea of them having to wait for an appointment to hear what they probably already know, would have bothered me worse. The anxiety would be tremendous, I think, so I believe the phone call is a good thing.

    1. Laurie, I prefer the phone call method too. As for the little white pills, it’s important to remember that not everyone experiences the side effects and that the magnitude of them greatly differs from person to person as well. See how things go. Just don’t suffer in silence if you do experience SEs. Validation and help with managing them is key. Thank you for sharing and good luck.

    2. Laurie – I was somewhat in the same situation as you – no chemo or radiation but mastectomy on the left side only. They wanted me to take the anti-hormone drugs too and I actually tried. Nightmare! After 3 and a half weeks, I had to quit. I couldn’t stand it. The oncologists I saw at that point (two different ones) were angry about it so I left the practice and went to another. My new oncologist there felt that my chances were very good if I chose not to take them (but of course, he wanted me to) and he was supportive and caring. I guess time will tell. Hugs to you!

  5. In Australia, it is very unusual to be told anything over the phone. All medical stuff is dealt with face to face. I was told by my breast care nurse and breast screen nurse together, but they had prepared me at my initial ultrasound report that the biopsy would probably be positive. I didn’t fall apart or anything, still haven’t cried, even after chemo and now half way through radiotherapy. I’m confident it will be treated well. Never asked “why me”. I feel ,”why not me”.

    1. Deborah, It’s always interesting to see how things are generally handled in other countries, so thank you for sharing. I have asked, why me? I only mention this to remind you that you don’t have to remain stoic all the time. That can be exhausting after a while. I hope you don’t mind me saying this. Wishing you all the best.

  6. Good topic — I think the whole process of this sucks (well where I live anyways) yes I am usually miss positive. Had my annual mammogram (this was in 2012 and I am from Illinois) – then sent me a letter to call them for another appointment (this is through local hospital) so I call the lady says oh don’t be worried we sent out 30+ letters for follow up screenings (WHAT?!)

    Ok so I have to wait like a month for another mammogram, that mammogram entailed me going in for an ultrasound and them saying well we think it’s suspicious but don’t worry, we will just schedule you for a biopsy a few weeks later. After the biopsy – they ask for all of my info phone, etc…nurse says we will call you either way but you have to make another in person appointment to come back (either way).

    Guess who never called, I called them a few times and they said oh no you have to come back and talk with a nurse – a week later. Ok so I at that point already knew and was sweating bullets. Had to take my husband with (who was trying to stay positive) and we were pulled into a private room with a nurse navigator and the radiologist (queue the tissue box being pushed at me) who says yes it’s cancer but it’s the good kind (hormone positive). WTH?!

    Needless to say not only did I then suck it up and said what’s the plan but expressed my displeasure with their process of saying they will call then they don’t and have me in a panic. It’s called psychological warfare and I see it everyday esp. mentoring other women. Just awful! Is there a good way to hear that news – nope not sure I would prefer one way or the other.

  7. Interesting topic. I was told via phone and that worked for me. During that phone call I was able to make arrangements for additional testing, to see an oncologist (it was a breast surgeon that gave me the news), etc. I think I prefer this because it is just a simple transfer of information–indeed, very consequential info–but I would hate to have to drive all the way to a doctor’s office just to be told one way or another–AND have to PAY for an office visit. If I go to the doctor, I want something to happen–a test, a consult, what have you. Not just to be told something.

  8. Thanks for sharing this with us! I too, got the info over the phone from my ob/gyn. At home, alone, while the hubs was meeting with a client who was also giving him bad news about our business with them. I remember that I had to struggle to hear his recommendations of several breast surgeons, as my ears started that white noise, high pitch thing, so very well depicted in films like “50/50”. Anyway, I agree, for your same reasons, over the phone is better.

  9. Nancy, this is a great topic. I prefer to receive bad news over the phone because I simply get too anxious and hate the wait. I received my news over the phone by a very kind Dr. — the guy who performed my biopsy. However, my at-the-time-bitch-GYN was not kind to me or my family. After receiving the news I felt confused and scared so I called her to get more information. I also did not know any Oncologists or surgeons. I asked the GYN what this diagnosis meant? Her reply was “you got breast cancer, OK?!”. Then, when I got the recommendation for the surgeon, who BTW I did not like because she was pure ice and a total bitch (no surprise they knew each other), I had made the decision to go with MSKCC. The GYN yelled at my mother because I was seeking a second opinion. I have not written a review for this woman yet and I am surprised because I don’t let those types of things go so easily. Maybe one day I will do a post about her. I wouldn’t be surprised if by now she lost her MD license or changed careers. I hope she did.

    Thank you for the great idea to let our doctors know about our wishes. These are things we don’t think about until they happen but I agree they should be addressed in advance. I will mention this to my Onco. And I do have access to that portal you refer to. Apparently my hospital does not post bad news there. I suspect they rather have a face-to-face conversation. Ugh! Not good at this either. xo

  10. My doctor called me on the phone. The first thing he said was, “Are you at home right now?” I was. He told me directly, “You have breast cancer,” but was very compassionate and helpful. I wouldn’t have had it any other way. In fact, if I were asked to come in before telling me on the phone, I think the anxiety would have been awful.

  11. I was told over the phone and in person, if that makes any sense. I went in for my mammogram, they made me stay for an ultrasound, then made me stay for a biopsy. That made me nervous right away. I got an immediate appointment with the surgeon who recommended a lumpectomy. I was told that I’d probably be fine with just the surgery and radiation. But the pathology report was not that fine. My surgeon and I kept missing each other trying to connect over the phone, when I got a call from the hospital scheduling department setting me up for a port insertion and chemo. I almost fell over. I was like “Ummm, aren’t I supposed to get an appointment with the radiation oncologist?” The surgeon had been trying to call me to tell me that the tumor was larger than expected and they had found evidence of cancer in some of my lymph nodes. I remember sitting outside of a bowling alley during a company outing in the freezing cold listening to the surgeon tell me the results and apologizing over and over for not getting ahold of me before the scheduling department called. I finished up the outing absolutely numb, then went home and drank a bottle of wine.

  12. I had a biopsy done, after I got dressed a nurse told me I would have to wait while an appointment was made for me with a surgeon, that’s how I found out. When I saw the surgeon a couple of weeks later she said “you have breast cancer, did anybody else tell you?” I said “those words were not used but I knew when I was told I would be seeing you.”
    I am not sorry that I learned that way, at least I didn’t have to wait for results.

  13. Nancy, this is an excellent topic, and one that needs to be addressed.

    I kind of found out two ways: in person and on the phone. My biopsy was on a Wednesday, and the doctor failed at getting a good tissue sample. My surgeon appeared magically and did the biopsy himself — after he said that we needed to do this immediately because “I can tell from looking at the mammogram that you likely have breast cancer.” It wasn’t a diagnosis, but it felt like hell. The biopsy results were on Friday; he called me on the phone, but I was at work. I received the news calmly (I was already braced for the news), but broke down about an hour later (because, let’s face it, we never are prepared for the news). My co-workers hugged me and offered TLC.

    I prefer hearing the bad news on the phone, too. This way, I don’t have the pressure to be stoic about the news. I can get off the phone and cry. My doc was very understanding and empathetic.

  14. It was on 9/12/2001 and I had gone to have an ultrasound as a mammogram 2 weeks earlier showed something.
    I knew I had a lump but when the nurse looked at the ultra sound she said that she had to get the doctor. That doctor walked into the room looked at the ultra sound and said ” You need to see a surgeon today, I do not mean in a week or more. You have cancer, I will call your gyn doctor and tell her. You need to go over there and be there when they open at 9:00. She left the room and no one asked if I need to call anyone. I just dressed drove to my doctors office and told them what happened. My doctor could not believe what had just happened but sent me to a surgeon that day. I did not like the way it was handled BUT my cancer was very aggressive and had doubled in 2 weeks. She probably save my life because I was stage 3 and had surgery in 2 weeks to remove the breast and had 2 positive nodes. I also had to have chemo and radiation because the cells had grown so fast.

  15. I was at work when I received the call saying that my biopsy showed that I had cancer.

    I was in shock, I realized later, but went to a staff meeting right after the call…..we had dinner and drinks. I wasn’t hungry and had no idea what anyone said. By some twisted trick of fate, my boss ordered ” slippery nipples” shots for everyone to celebrate something work related. What I don’t know. Usually I don’t drink but did this time……Then barely made it to the bathroom hanging onto the walls.

    I wish that I had thought to tell the nurse that called me that it was not a good time!

  16. After having a biopsy for some “suspicious calcifications”, they scheduled me for a follow up appointment at the breast center. I thought it was odd that they would tell me the results instead of my gynecologist who sent me for the mammogram that started this all in the first place. My husband and I went to the center and we are put in a room with a “nurse navigator” and the radiologist (who was a total asshole). Actually, they were both jerks. The first words out of the nurse navigator were “since you have cancer, we need to discuss your options”. WTF??!!! That is how they told me. I was furious!!! It was not their place to tell me nor tell me like that. She immediately starts telling me what I need to do and makes all kinds of appointments for me. I was in shock and ANGRY! We left to go home and I called my gynecologist who was equally as angry as I was. It was her place, not theirs to tell me. This nurse navigator (who was cold and harsh) told me that she was going to manage all my follow up care from there on. I called her back later and told her that she was going to have NOTHING to do with my care from there on and she needed to butt out of my case and never, ever call me again. I then contacted the manager of the breast screening center and told them the same. I don’t know how this nurse got to this position of responsibility in a patient’s care but she was not going to run my treatment. As you can tell, I still get mad about this and it’s been over a year. To this day, I still want to walk into her office and yell at her in person.

    1. As an added note – I love my gynecologist, kind of liked the surgeon but especially adored the reconstructive physician who did the final fix – he went above and beyond to get me exactly the care I needed after my mastectomy and the results were amazing.

    2. Gaye, Gosh, that was not the way to find out. I don’t blame you for being so upset. I hope she received tons of feedback so she could learn from the mistake. Good for you for giving her a piece of your mind! Thank you for sharing.

  17. I had the suspicious mammogram in may 2016. I was ushered into the ultrasound room whici took forever. a very young new dr got my husband out of the waiting room to tell us about the suspicious spot. It must have already looked like cancer even then because the dr looked concerned and ultimately I ended up making her cry with me which did not make me feel very confident. I was at akron general breast center in ohio and they wisked me into an office and scheduled a biopsy right away and I met with my surgeon (Mary Murray, she is great). Unlike you, my surgeon actually did call me herself to tell me I was stage 1a and everything would be okay (umbrella, how do you really know that?). I was at work doing a special evening project, trying to impress my boss so it actually helped I think because I focused on work at that moment. Then I went to my office for break and called my husband and scared the hell out of him. His mom died from breast cancer Mets in 2010. I cried all the way home during my long commute. My experience since then has been that I feel luckier than most because I didn’t have long rads (my surgeon was able to do mammosite) and no chemo for me except that I have been on arimidex and the hot flashes and moods and dried up vag suck. Most of my medical people have been good to me but a couple of them sucked (I told them) and my current oncologist seems unconcerned with my side effects. I’m only 48 and I feel like these pills are taking me on a speeding train to age 75. Anyhow, that’s how I found out. I was so scared when the young dr started crying. I was so scared when I was told they were going time inject blue dye into my nipple (most patients tolerate it well, but I might call you a mfer) I was so scared when the mammosite cath kept weeping my own body fluid all over the place (no one mentioned it would do that) and for some reason laying on the radiation table was so scary and degrading almost. Everyone runs out and leaves you and hides behind a 3 ft thick door and watches you on a monitor. You’re in there all alone. I would have never made it through 6 wks of regular rads. I have a high chance for recurrence I guess. I’m trying to do what I can but mostly I just pray I never have to go back.

  18. I have access to my medical records online so read the biopsy report a couple days before I was called. Kind of takes the wind out of your sails to read it online and be all alone. But I’m a very stoic person, so I soon got over the shock and prepared myself for what needed to be done.

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