How to communicate with a silent oncologist - 1251707

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kimo
How to communicate with a silent oncologist - 1251707

I have seen my oncologist for more than three years. She seems to care deeply about my well-being, she is never hasty, and she is keenly observant and exceptionally well trained and has many other fine qualities. But I am frustrated that she says very little during my appointments. I've had appointments that were scheduled to last one hour, and they last less than ten minutes! She routinely runs 30 minutes ahead of schedule by 11 am, so I think she is equally brief with other patients.

If I ask a question, she will respond in four words. If I press for details, she will respond with two words. If I raise a topic based on something I read in a medical journal (e.g., the possibility that not all tumors grow at a consistently exponential rate), she seems to never be interested in the premise of the article and shuts down the discussion immediately. She never tells me her findings after doing a physical exam except once when she exclaimed, "Your lungs sound better!" She now refuses to discuss my prognosis (in the past, she was certain I would be dead over a year ago). I really do need to know where I stand because I am on medical leave and soon must decide whether to quit my job.

I have read that an unusually high proportion of specialist attendings are somewhat autistic, and that might explain her robotic manner and inability to pick up on social cues, but of course I have no way of knowing. I have also read that some doctors withdraw emotionally to protect themselves when a patient is doing poorly (as I am, depending on your perspective). She was born and raised in another country, and there are possibly language issues, although she is quite fluent in basic English (I avoid American colloquial phrases, just in case they are difficult for her).

If anyone has suggestions for how to have more fruitful discussions, I would be happy to hear them. At this point, I wonder why I even bother going in every month, other than to get my lab work done.

double trouble
Reply To: How to communicate with a silent oncologist

Kimo, I'm wondering if you have a good primary physician. My primary is wonderful. She's easy to talk to and will call my other doctors (specialists) regularly to make sure she understands where things are with me. Then we can have very frank discussions about everything, including prognosis.

If your onc. is a competent doctor, maybe what you need is a "middle man" or a moderator. If you've been seeing her for more than 31/2 years it seems unlikely that she will change her style.

I hope you get it worked out. It is very important for me to be able to really talk things through, so I understand why this is problematic. Good luck.

Debra

certain spring
Reply To: How to communicate with a silent oncologist

I agree with Debra that the primary physician could be a useful way in - I have only recently learned about my oncologist's treatment protocols with Tarceva, and this is because I asked the GP to call and find out.
My oncologist is a friendly and compassionate person and, unlike yours, she is very easy to deal with socially. Where I can relate to your situation is that she doesn't want to discuss the future or what we might do when the Tarceva stops working. And she certainly isn't interested in my opinions or any contributions I might hope to share.
I think the answer is probably "Get another oncologist" - for me as well as for you. What gave me pause was my visit to a specialist hospital for a second opinion. The doctor we waited two hours to see dispatched my husband and myself in ten minutes, ruling out various treatment options and showing no interest in my slightly peculiar histology, let alone in keeping me alive. He clearly had the knowledge I wanted, but I wasn't sure I could cope with someone so dismissive. So I went with the Hilaire Belloc rhyme, "Always keep a hold of nurse/For fear of finding something worse".
I suppose the commonsense answer is that oncologists, like people, have a range of personalities - that's evident from the doctors who contribute to this site. I, like you, wish I could find one with whom I could communicate better. My advice would be to shop around for someone who has your oncologist's good qualities but who possesses better communication skills (my advice to myself is the same!)

catdander
Reply To: How to communicate with a silent oncologist

certain spring, Inspire yourself! as you inspire others.

Dr West
Reply To: How to communicate with a silent oncologist

I'm afraid that this sounds to me like a personal characteristic that is unlikely to be something you can change, so I suspect that if you want to have these conversations, your most fruitful approach will be to find someone else to have them with, whether a primary doctor or, more likely, another specialist for a second opinion and potentially occasional follow-up visits as needed.

To be perfectly frank, I think most primary physicians are not knowledgeable enough about the specific issues to offer the kind of guidance many people here are seeking. I don't mean this as slanderous, because I'm not a qualified cardiologist or gastroenterologist or manager of diabetes, and there is just too much medical information for any one doctor to have a good level of competence about a broad range...this isn't 1890, when all medical knowledge could be summarized in a single leather-bound volume. I suspect that many and probably most people think that their or a typical doctor knows far more about everything in medicine than they/we actually do. Most general practitioners/internists I know of are more than happy to have no role in directing the cancer-related issues, don't feel qualified to do so, and expect the oncologist to serve that role nearly completely. Moreover, I think that's appropriate for their level of cancer knowledge.

Again, I don't say that as a terrible criticism, since I think those of us in medicine know that specialists are best equipped to handle these complex issues, and few of us are extremely competent outside of our range of regular practice over many years. But I think it's a mistake to expect a general physician to be adept at answering any but the most general questions about expectations or management of a cancer, and I think most are out of their depth when they try.

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Associate Clinical Professor
Medical Oncology
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

certain spring
Reply To: How to communicate with a silent oncologist

Hmm, but knowledge is not entirely the point. It is a question of communication within the caste. My experience is that doctors find it easier to communicate with other doctors, and are more forthcoming with other doctors. My GP can ask questions and get answers that I couldn't get. She doesn't pretend to be a lung cancer expert, but sees her role as a coordinating one - ie knocking people's heads together and making them talk to one another. In the NHS, she is also the person who is ultimately commissioning the care, so that gives her more weight.
Going back to kimo's original question, I have encountered three senior oncologists since dx. Two out of three have been dismissive and distant. I feel the problem may lie in medical school and the attitudes that incubate there. I wish GRACE could start a matching system, along the lines of a dating website, for doctors and their patients!

catdander
Reply To: How to communicate with a silent oncologist

:idea:

Dr West
Reply To: How to communicate with a silent oncologist

Well, that point is very well taken. I appreciate that it's not merely knowledge but connection. I just mean that when people are seeking insight about what to expect or what the options on, they really need both the information and effective, compassionate communication about it, so even someone who connects well may not serve well in that capacity if they can't answer a patient's questions.

I don't see GRACE becoming "onc-harmony.com", but I completely agree that while one oncologist might resonate well with someone, another patient might not be a great fit. This is why I really don't buy into the concept of a doc or institution that is "the best": some people want lots of evidence and a careful discussion of options that the patient can choose among, while other patients may vastly prefer to be directed on how to proceed. One patient may prefer the confidence they get from receiving care at a large institution, while others may be put off by being treated at a very large center and far prefer a more intimate environment. I wonder if doctor rating sites will really catch on. Right now, they still tend to feature just a very tiny minority of people's views that tend to be either those extremely happy or extremely unhappy with the doctor, and therefore not very representative of the broader experience in that person's clinic.

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Associate Clinical Professor
Medical Oncology
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

aunttootsie001
Reply To: How to communicate with a silent oncologist

I think I'd have to scope out a replacement Medical Oncologist if that was possible. Being comfortable with your Oncologist is very important to me! That added Stress isn't worth it. I was afraid when my first Oncologist retired 7 months after I started with him. He was so nice and personable and gave awesome descriptions of everything we were doing! He made me so comfortable and didn't think I could luck out twice. But his replacement was a woman and she is as great as he was! Could not tolerate your Dr. Good luck and keep us posted!

certain spring
Reply To: How to communicate with a silent oncologist

Definitely not ratings. More something along the lines of: "Polite and generally grateful patient (Stage IV) seeks thoughtful lung cancer specialist with research interests in molecular testing and/or targeted therapies. Must be willing to liaise with cardiothoracic team at another institution. Capacity to tolerate well-informed patients will be an advantage."

heartspy
Reply To: How to communicate with a silent oncologist

Certain Spring - hahahahaha...nice ad! Sincerely! Thanks for the smile.

kimo
Reply To: How to communicate with a silent oncologist

Thanks, everyone, for sharing your thoughts on my dilemma.

I do indeed have a very empathetic primary care provider who has shown herself to be a vigorous advocate for me even though I've actually seen her only once. That's a great idea to use her as a go-between with my oncologist. A friend of mine who is a doctor (but I never ask him about my case) says it bothers him how often doctors will say, "No one can know" when a patient asks for a prognosis but will nearly always freely give their opinion to a fellow doctor ("That guy can't possibly last more than three months").

I don't ask even my oncologist questions specific to my rare cancer, and I wouldn't dream of asking my PCP. There just isn't much known about it. I ask my oncologist only general questions about the nature of tumor mutation and progression and the like. Right now I'm trying to figure out what is the bare minimum of communication I need from my oncologist. I don't need hand holding and I don't really need her thoughts on technical issues in oncology (although I would value her opinion), but I think I at least want her to tell me what she finds when she listens to my lungs. The last time I saw her, she dispatched me for an immediate x-ray. I happened to ask the radiology tech if a pleural effusion could be seen on an x-ray, and she said, "Oh yes. That's why we're doing these extra views" (lateral decubitus). So I conclude that my doctor heard something in my lungs that raised this possibility, but did not share that with me.

I still have hope that she can overcome her tendency to say almost nothing because on one occasion, two years ago, she strode into the exam room and immediately declared, "You want to know exactly what I think." I said, "Yes!" And she laid out her thoughts in detail. I think she must have braced herself to do this. It was my best appointment with her ever, and I hoped it would set a new tone. But, ever since, she has been as quiet as ever.

Dr West
Reply To: How to communicate with a silent oncologist

Interesting. At least that one episode shows she's capable of communicating effectively, as you'd hope for. Perhaps a little more direct encouragement/cajoling could bring her around again, at least intermittently. You might get a few more of those very productive appointments.

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Associate Clinical Professor
Medical Oncology
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

kimo
Reply To: How to communicate with a silent oncologist

Well, I saw my silent oncologist today and employed a new if slightly deceptive strategy to squeeze some information out of her.

Right now, I am on leave from my job. I said to my doctor, "My employer wants to know if at some point I can go back to work and put in at least a solid year. My sense is that that is not realistic. What do you think?" And even though she won't tell "me" my prognosis, she apparently was willing to tell my employer something through me. She shook her head gravely and said, "No." Just to confirm, I said, "So I'll tell them, 'Thanks for waiting for me, but I won't be back,'" and she nodded. Well, it's not a full-fledged prognosis, but it's more than she has said in a year. It gives me at least a little bit of information to plan around, which is what I want. It's been driving me crazy to not know whether I'll be returning to my job.

kimo

double trouble
Reply To: How to communicate with a silent oncologist

I'm sorry Kimo. Even though we already know, it's hard to hear.
Debra

Dr West
Reply To: How to communicate with a silent oncologist

I'm sorry for the news, and I'm also sorry that you have to go through maneuvers to extract this kind of insight. It's a fair question to ask directly and expect a meaningful discussion.

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Associate Clinical Professor
Medical Oncology
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

certain spring
Reply To: How to communicate with a silent oncologist

kimo, I wonder how you feel about this? We are assuming it is upsetting but in a way - as you say - it is good to be able to plan, especially if you have things you want to do outside of work. And you did at least flush something out of her.
It's worth bearing in mind that most doctors try to help their patients with bureaucracy and the outside world. So my GP signed me off as having less than six months to live, which felt fairly appalling until my brother pointed out that this was a worst-case scenario that would entitle me to various benefits (the eligibility criteria being a life expectancy of six months or less). I wonder if your oncologist has her own ideas about helping you avoid unnecessary stress etc?
For what it's worth, I gave up the work I was doing on dx and then, to my astonishment, slowly came back to some of it.

catdander
Reply To: How to communicate with a silent oncologist

I think that's a very reasonable thought cs. It's very much the same way in the US with insurance companies and federal social security disability.

Your story about returning to work after such close calls earlier on should be heard by everyone dx. I know you, your family, and your Grace family couldn't be happier that you're doing so well...plus those who benefit from your work :)

double trouble
Reply To: How to communicate with a silent oncologist

My onc is very straight with me. He said today that if we assumed that none of the available therapies were going to work, within 6 months to a year the cancer would take me down. That's shorter than the 18-24 months I heard in September.

But I remain optimistic. I have Xalkori now, Alimta for later, and second generation ALK inhibitors might be available by the time I need one.

So with treatment, that 6 months worst case scenario can turn into years. Still, I keep in mind that I could step out in front of a bus or have a heart attack or an airplane could fall out of the sky and land on my house too.

I've been an advocate of planning from the beginning. I have even reduced the size of my household to the very bare minimum (I could live in a studio apartment) making sure my family got the things they wanted ahead of time so there will be nothing to argue over later. I've already done my Hospice paperwork, so when the time comes, we're all set, and I'm making monthly payments on my cremation, and let them know exactly how I want things done.

I feel more free to enjoy things day to day with this stuff out of the way. The only thing I haven't been able to do is find a new home for my cat. I have to do it... I don't want him to end up in a shelter. But I'm pretty attached to him.

Anyway, knowing is a shock, but with knowing comes a sense of urgency and a compulsion to get the planning done, after which there is a freedom that we deserve. To be able to not stress over those issues is wonderful, liberating. At least for me.

Debra

kimo
Reply To: How to communicate with a silent oncologist

Oh, you are all so kind! It's true that hearing my oncologist's one-syllable statement was a sort of threshold moment even though it was exactly what I expected to hear. (She may be exceptionally reserved, but she did manage to pack a lot of drama into that lone syllable, closing her eyes and saying "No" very gently and regretfully as she moved her head from side to side.) It just carries more force when a doctor says it. For someone like me, hearing it "officially" stated that I won't be returning to work is essential to being able to move on. I'm letting it all roll around in my mind for a few days, and then I'll tell my employer.

I have a terrific job and colleagues, but it's not essential to my happiness to keep working. For now, I'm glad to be free of the nagging thought that I ought to be reading to keep up in my field while I'm on leave. I have long since been trying to take care of things to make it easier for others when I die, and now I can focus my limited energy on doing what remains. And, like Debra, I expect that finishing taking care of these matters will leave me more free to focus on living just as I please and more vividly in the final stretch, however long or short it may be. I realize that my doctor's still-pretty-vague prognosis could be wrong---various other doctors predicted I'd be dead years ago---but I still need to take action based on my best sense of my situation.

Sometimes I feel like I'm losing a thousand things each day, but in a way I welcome this. The payoff is that life seems ever more reduced to its essentials and has a beautiful, if bittersweet, character that is easy to lose track of when caught up in the ordinary humdrum.

I send each of you a cheerful smile, a hug, and my very best wishes. It's a strange journey we are sharing, but it helps so much to share it with all of you.

kimo

(Debra---good luck finding a new home for your cat. That is so terribly wrenching.)

aunttootsie001
Reply To: How to communicate with a silent oncologist

Ladies, it saddens me to have to hear the two of you speak of these things. I try to discuss such things with my husband but I believe he is still in denial. I don't plan on giving up any time Soon and I know neither of you will either. Kimo there is a bright side to not returning to work! Relax and enjoy it as much as you can! Myself if it wasn't for Dr's visits and lab work I'd head South and spend some time with my Baby brother who by the way is in his 50's. I am planning on going for Easter! And Debra I wish I could help with finding someone for your Cat! But it sounds like you need her as much as she needs you so I wouldn't be in too big of a hurry to give her away! Kimo had you looked into finding another ONC? I know it's draining when you have to be guessing about what's going on with your situation. My Primary Physician wasn't that good of a Dr. Unfortunately it took me too long to find another Dr. 2 years earlier and I wouldn't be in thos pickle! I finally found a New Primary June of 2011 and he is the one who found my Tumor! So that's why I could never handle a silent ONC! The ONC I have now is very personable! I'm very comfortable with her. I don't know if you ladies at asking the prognosis question, but until I feel as if I'm getting close I don't want to know! I'm just trying to get the most out of whatever time I have left! Phew wee, how did we get here! Someone tell a joke! We all need a good Belly Laugh! Love and Prayers to all three of you!

Jazz
Reply To: How to communicate with a silent oncologist

Kimo,

First let me applaud your fabulous avatar! Your description of living "more vividly in the final stretch" is beautifully put. I wish you a long stretch full of a thousand new and wonderful things.

As for the silent oncologist - I have been fortunate for the most part, although I fired the first oncologist after two visits. My father's oncologist was very conservative and perfunctory until we sought two other opinions within the network and saw a specialist at an academic center. This changed his attitude, strangely, and he's been much more communicative since. My father is very tradiitional and respectful of physicians, and for some reason insisted on sticking with him, acknowledging his non-communicative style, hoping he would redeem himself. His oncologist seems to have done just that after the round of opinions, so perhaps, if you don't move on, your oncologist will come around in her own way. Otherwise, good luck finding another with whom you connect.

Best,
Jazz

kimo
Reply To: How to communicate with a silent oncologist

Don't worry, aunttootsie001, I'm sure there are plenty of laughs ahead for all of us, and I don't intend to miss a single one!

There are a zillion ways to handle the stress and fear and pain and all the rest, and denial is certainly a common approach. But I think it's hard when those who are close adopt a very different strategy than the patient. There are a few people in my family who either completely deny that I am ill or who prefer to believe that somehow I'll be miraculously cured. I can't speak honestly with them---they don't want to hear it---so that makes it a lonelier experience than it would be otherwise.

I doubt I'll hunt for a new oncologist at this stage. A certain loyalty builds over the years, despite the problems. She may be too quiet, but at least she is silent in a tender-hearted way, not at all a distant one. And I'm a fairly shy person myself, so I can sympathize with her difficulty in expressing herself. What can I say---sometimes I'm just intrigued to see what I can make of this strange relationship that has come into my life.

Thanks, Jazz. I hesitated to use that avatar because I was concerned it might offend someone, but vintage-era medical porn is so completely insane that it always makes me smile. I think the original painting has a perky title like, "My doctor says he needs to examine me!" Alas, I seem to have considerably less fun in the radiology suite than this model does.

catdander
Reply To: How to communicate with a silent oncologist

While we're on the subject. I love both the vintage avatars. Jazz knows I'm a fellow scooter girl. And kimo, no one, no one could pull that off any better than a woman with lung cancer and a good sense of self and humor. I smile every time I look at it too.

certain spring
Reply To: How to communicate with a silent oncologist

Hear, hear!
"Strange relationship that has come into my life" - that is exactly how I feel about my various doctors. They loom pretty large and yet I know virtually nothing about them.
And kimo, what you describe is very much my own experience - that although there are multiple losses, there are gains as well. I agree with Debra about the sense of freedom. I no longer worry about some things that used to bother me. I am more philosophical, for sure.
Aunt Tootsie, I am sorry if the conversation seems gloomy. For me it helps a lot to be able to share these thoughts with people who understand. Like kimo, I've had some lonely times, although I'm lucky in my husband, with whom I can talk openly. But we also have a lot of happiness and fun.

double trouble
Reply To: How to communicate with a silent oncologist

CS absolutely, priorities change dramatically. Things that used to be very important seem silly. We seem to develop an uncanny ability to not "sweat the small stuff." Now that I've lightened my load I wish I had a big RV to drive off into the sunset in!!! Like the lady in that silly movie about a parrot, Paulie. Oh well. Best to count the blessings that I actually do have! :-D

Debra

dbrock
dbrock's picture
Reply To: How to communicate with a silent oncologist

I might say, Kimo, that as you stated -

She may be too quiet, but at least she is silent in a tender-hearted way, not at all a distant one. And I’m a fairly shy person myself, so I can sympathize with her difficulty in expressing herself.

Perhaps you can take this knowledge of her personality and really ask pointed questions, it seems like a simple suggestion, but come in to your appointments with a list asking for answers. I have done this for just simple routine appointments.

I also think that sometimes as patients the docs might think we know or understand more than we do. Perhaps asking your onc. straight up what you started this thread with. "I just wanted to tell you sometimes I get frustrated that we aren't talking more about this. I feel like I don't know as much as I need to." ...challenge her with this. Maybe she needs to know how she can talk to you - and if you can take it. As you said, she seems tender-hearted, perhaps she doesn't want to upset you. if you show her you can take it and want it, maybe she will be more willing to give it.

That being said - It would be difficult to be tender-hearted and be an oncologist.

Good luck, Kimo! Let us know if it gets any better.

Visit my bio here.

laya d.
Reply To: How to communicate with a silent oncologist

I'm with Denise. . .I think this woman doesn't want to take "hope" away from you. . .and given her line of work, maybe she is under the impression that her patients need to be sheltered from the stress of a not-so-good prognosis. Maybe she doesn't recognize that some patients actually are more stressed out by the lack of information rather than getting bad news. Most of us who have lived in the cancer world (whether as a patient or a caregiver) know how super-scary the "unknown" really is (case in point, "scanxiety"). So, maybe it just needs to be pointed out to her - - gently, but not in a subtle way. . .

xoxo,
Laya

kimo
Reply To: How to communicate with a silent oncologist