How to communicate with a silent oncologist - 1251707

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

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!)

certain spring, Inspire yourself! as you inspire others.

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

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!

:idea:

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

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!

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."

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

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

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

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

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.

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 :)

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

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!

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

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.

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.

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

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.

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