From the Grace Archives | Originally Published November 13, 2011 |
Why should you get a Second Opinion?
My father once told me that the hardest part of getting what you want is knowing what you want. I’ll admit to my GRACE family that he was really giving me advice on my (then) terrible choices in dating, but I think that the same idea applies to second opinions, and a lot of other things in life. What do you want from the second opinion?
What is the main thing to look for in a second opinion? At the most specific end, I’ve had a few patients that have arrived with a consult question of, “I’d like to get on your clinical trial of X. At the most nebulous end, I’ve had patients visit saying, “Well, my daughter doesn’t trust my local oncologist and looked you up on the Internet. Both of these kinds of patients are welcome, as well as the full spectrum in-between, but having some idea of realistic goals can be helpful to achieving them.
Many patients seek a second opinion to evaluate if their current choice of treatment is correct and to make sure that nothing is being missed. Self-assured, nerdy, ivory-tower academic docs (yes, I’m making fun of myself and my friends here) love to criticize local oncologists to make ourselves feel smarter. But, the truth is that there are a lot of incredibly talented, brilliant community oncologists who somehow manage to know all the details of care in not just one or two cancers, but in all of them! Very frequently, I have the great pleasure of assuring a patient and their loved ones that they are receiving sterling care and that they should continue on with the current plan. In such cases, the second opinion provides reassurance. Further, the academic doctor can educate you about your cancer from a different perspective. Finally, in such a consult, you can establish a relationship with the second opinion doc in case you want additional input later on. Regardless, most patients are seeking some kind of advice about treatment options. In particular, one of the most popular reasons to seek consultation with an academic physician is to seek clinical trial options. As our scientific understanding of cancer explodes, these advances in understanding are being translated into improvements in clinical care. While altruism is certainly one legitimate reason to enter a clinical trial, it’s far from the only one. If the trial really is successful, the participants are the first to benefit. Assuming that your second opinion doctor has chosen his trials well, you may be able to achieve 2015-level care in the year 2011.
Who should I get a second opinion from?
You should see an academic doctor with specialty expertise in lung cancer at an academic center and not another private practice oncologist. Most community oncologists are knowledgeable about a very wide range of cancers and blood disorders. I greatly admire their ability to keep track of so many different cancers and wonder if I could ever do that. At the same time, I believe that someone who specializes very narrowly in one or two cancers will know these cancers inside and out, from the details of standard care to the most promising trials available. You may have an excellent mechanic, but can he repair a rare part on your 1967 Camaro as well as mechanic who specializes in old Camaro’s? Will your local mechanic know, for example, that the solenoid on 1967 Camaros was designed too narrowly, and can wear into the middle oscillator creating a certain high-pitched noise? And, does this GRACE doctor actually know anything about old Camaros? Sorry GRACERs, I made up the car stuff, but I hope that it makes my point. Going to another local oncologist with the same level of knowledge is less likely to result in a higher level of expertise or greater clinical trial options. If a family member of mine had cancer, I would seek consultation from someone who specialized in that particular cancer at a major academic center, with a good portfolio of carefully chosen clinical trials.
Location is a final factor worth considering. You may love the idea of my 2nd line trial for patients with EGFRmutation, but are you really willing to travel from WA to NC every six weeks to see me? For some patients, any degree of travel is acceptable to get on the best trial or get a good opinion. But for most patients, time and financial resources impose restraints on distance.
When to get a second Opinion
The best time to get a second opinion is at a major decision point, typically before ever starting therapy or at progression before starting a new kind of treatment. The very least productive time is right after starting a new line of treatment. Why? Unless the chosen regimen is truly terrible, a good consult oncologist will not recommend changing it until it has failed. Further, once the first drop of a regimen has been started for a given line of therapy, the patient becomes ineligible for clinical trials for that line. This last point is truly important. Too often, patients see me a day or two after starting a new treatment, with the idea that if I have a good trial for them, they’ll switch. No clinical trial allows this. They can’t, because they would have no way of knowing if a response was due to the trial regimen or to whatever was given before it. It is reasonable to want to start treatment right away. I agree that effective therapy should be instituted as soon as possible after diagnosis. But please note that the key word here is “effective". Rapid administration of less effective therapy is less helpful than slightly delayed administration of truly optimal therapy. So, if you truly want to consider options from a second opinion, don’t start a new line of therapy before seeing the expert!
Some patients (and their doctors) wait to get a second opinion when they’ve run out of standard options. It is true that the academic doctor may have clinical trials that can offer treatment when no good FDA-approved options are left. However, some of the very best clinical trials are restricted to patients in early lines of therapy and it would be a shame to miss out on even considering these. So, I recommend seeing at least one second-opinion at a major academic center as soon as possible after diagnosis.
Empowering the doctor to help you—the value of data
The consult physician will give you advice based on the information you provide him. This data includes: doctors notes, laboratory reports, pathology reports (and actual tissue or slides for further testing), radiology reports, and CDs of the actual images. The better the information you provide, the better the opinion he can give you. Many academic centers have new patient coordinators that will help you to transfer this information.I’m blessed with a very good coordinator—she’s an incredibly valuable partner in enabling me to serve my consult patients. However, even with the best coordinator, you can improve the quality of your second opinion by advocating for yourself or your loved one by ensuring that all of the data is there before the time of consultation. Often, patients ask their local doctor to send “everything" and very little of value is sent. The consultation is then frustrating for both patient and doctor. Cancer is frustrating and the cancer family shouldn’t have to deal with getting information transferred. But, as reality stands, you can improve the quality of the advice you receive by making sure the data is there. Some of my patients even bring binders with them containing a copy of these records, along with medication lists, lists of medication allergies, and CDs of all of the images. While this is certainly not expected, it can facilitate an optimal consult.
At the Consult—What to expect and how to maximize your time
If you’ve done the prep work described above, you’ve already done the most important things. You know what you want, and you’ve brought copies of your records. What else should you bring with you? I recommend starting with loved ones who you want to support you. Loved ones can provide both emotional support and intellectual support. They may ask useful questions. And, they may remember things that you don’t—the more ears, the better. If there are important people that can’t be there at the visit, consider creative ways to bring them in. The most common modality my patients have used is a cellphone with speaker mode.I’m working on a project at UNC to use video-conferencing to bring distant children and other loved ones into the consult room. You can replicate this idea yourself with a computer with skype or facetime (or even one of the new phones that can do this!)
What else should you bring? Consider bringing a notepad or if you’re not good at taking notes, a tape-recorder. Some patients are shy about tape-recorders in our medico-legal era, fearing that this will make the doctor uncomfortable and disrupt the doctor-patient relationship. Of course, you should ask for permission before recording, but most docs will be comfortable and won’t mind—if anything, a tape recording protects good doctors. Bring your questions, ideally written down so that you don’t forget them. On the Internet, you can easily find lists that others have written of questions to ask your doctor. I recommend against these lists.If you have a good doctor, he will cover anything on these “standard" lists. You should, however, ask anything that’s on your mind, even if you think it’s silly or trivial.
Finally, bring a book (or ipad, computer, or other choice of entertainment device). Doctors who take a lot of time to talk to patients often run behind. This is particularly common in academic offices where doctors have little profit incentive to see more patients. I don’t mean to excuse doctors who run behind (myself included). Rather, since it happens frequently, why not prepare for it to make the wait less miserable? Allot a few hours for a one-hour appointment and account for this in your driving time and parking arrangements.
The consult will often begin with a nurse, nurse practitioner, PA, or medical trainee. This person will get a lot of basic information from you, and, if it’s a high level person, even provide some education. Such a person is not a replacement for the doctor, but a supplement to him. Some of these people may become longitudinally invested in your care and may be very useful to you. Don’t be surprised or put off by them—they’re part of the consult and may become important allies in your care.
On playing nicely together—the value of academic/community cooperation
Congratulations! You’ve completed the consult. The doctor has taken your history, examined you, and reviewed all of your laboratory results, pathology results, and imaging. She’s rendered an opinion. Hopefully, she’s also explained everything to you in plain English and has answered your questions. Now what?
Well, if you have a good local oncologist, you have just added another member to your team. Many patients fear that their local oncologist will be jealous or that the academic doc will only be interested in them if they can take over care. Neither could be farther from the truth. For a variety of reasons academic and local docs often love to cooperate to provide optimal care for a patient—in quick summary, it naturally aligns with the interests of what each enjoys doing. Success in providing best care as a team involves communication.Doctors primarily communicate via notes. While phone calls and emails are a part of care at some decision points, notes are especially powerful because they convey a great deal of detail. You can facilitate this exchange of notes by bringing each of the doctors each other’s cards. This is worth doing even if one of the doctors referred you to the other.
When the teamwork approach is chosen, there are two basic ways that work for when to see the academic doc again. Most commonly, patients will return at the time of progression. At this visit, the academic doc will review images (sometimes with his radiologist too) to confirm that progression really happened. Next, he will review treatment options including both clinical trials (which would usually have to be administered at the academic center) and standard options (which can usually be administered locally). The one key point here is to not start a new line of therapy until you’ve had this consultation—it’s administration would make you ineligible for trials until you progress again! The second approach is chosen by patients who want closer contact with the academic doc and want things checked on a bit closer. This approach would be to see the consult doc each time that scans are obtained. The advantage of this approach is more constant involvement of the consult doc in your care—she reviews each scan, has the opportunity to provide more supportive care (help a bit more with day to day stuff like side effects from chemo) and is more up to date with everything going in with you when key decisions are needed.
The Danger of multiple opinions
If getting one second-opinion is good, getting two must be better. Right? Although it’s OK to get more than one second-opinion, there are certain dangers in multiple opinions. Most obviously is fishing until you hear what you wanted to hear. If your cancer is incurable, do you really want to doctor shop until you find a surgeon who is willing to do a futile surgery? What if his approach, destined to fail, causes you harm including side effects, complications, and even shorter life?
This latter concern was exemplified for me in dramatic fashion a year ago. I had a challenging case that I wanted advice on and happened to be attending a lung cancer conference. In one session, participants had the opportunity to ask a panel of experts for advice on difficult cases. In front of me sat a panel if the world’s most famous thoracic oncologists—the perfect opportunity to get a dozen high level opinions for my patient. I presented the case. Then, one by one, the panel members rendered opinions. As the discussion moved from panelist to panelist, the advice got progressively more aggressive. Gentle chemo became aggressive chemo became small surgery plus chemo became chemoradiation became chemoradiation followed by massive surgery! Academic doctors often have big egos. They feel a need to “one up" the opinion given before them. The problem is that the more aggressive advice isn’t necessarily the advice that will result in the longest life with the highest quality. Patients will be prone to privilege the last opinion, not only because it is given last, but because the most aggressive option often sounds the most hopeful. The problem is that if the hope is false, the patient will be more likely to be harmed than helped.
GRACERs, I hope that I haven’t offended any of you here. In trying to provide you with a complete and practical guide on how to best use the second opinion, I realize that I’ve said a few less-than-politically-correct things. I say them purely in an attempt to arm you to make best use of the second opinion.
My strong personal opinion is that the best care available to most patients is on clinical trials. I’ve cut my income into a third by becoming an academic doc for the privilege of designing clinical trials to try to improve the standard of care. I passionately believe that many of our trials regimens are very promising to be better than existing standard of care, which, frankly, is not good enough. I have no doubt that if my father were to develop lung cancer, that I would seek the best available clinic trial for him. In my opinion, seeking good clinical trials is the most important reason to seek out a second opinion. Clinical trials are not the best choice for every patient at every time point, but I feel strongly that optimal care should at least consider them at every major decision point.
Thank You Dr Weiss for a very informative post, personally I have not had the need to find a second opinion my Onc is excellent and really up on what is out there, I am also lucky to be on a clinical trial of Necitumumab have been since August 2011 and I can say that I have really excellent care and the side effects are minimal
BRAVO!!! (Applause) A fine piece of writing, worthy of syndication. Thank you very much, Dr. Weiss!
Coincidence of timing. I recently took my mom for a second opinion consult with a research-oriented onc. practice. It went well. Two nights ago, I discussed clinical trials with my mom. She is very concerned about the the downside of worsening her prospects and risks. My question for Dr. Weiss on this subject is, how do you professionals overcome the deep fear of a prospective participant that he or she will be worse off in a trial versus with the “tried and true” treatment (so to speak), especially if the trial involves first or second line treatments?
(Joins applause.)Great post, Dr Weiss – I wish I had read it before I went for mine! I think there is a problem with hoping for a “saviour” second opinion, as in someone who is going to get you out of jail. I couldn’t understand why I felt so depressed after we saw an academic oncologist at a specialist center. He simply told us a more detailed version of what I already knew (mainly from GRACE I might add). After a bit of self-examination I realised that the irrational part of me had been hoping he would pull a rabbit out of a hat. So I’d warn people to keep their expectations moderate.
Dr. Weiss: Thank for your eye opening posting about second opinion consultations. Most importantly, the value of clinical trials. My academic medical oncologist is putting me on second line gemzar and i was only offered lucanix trial a few months ago which i failed to qualify for due to progression. I asked about trials and he seems to be holding them in reserve. How do I push for clinical trial in lieu of second line standard care?
Dr. Weiss, thank you for the valuable guide. If GRACE publish a book or something in the future, this guide will definitely be an important part.
My second opinion consult confirmed my treatment plan and added “You’ll probably run out of treatment options.” This from a research center lung specialist oncologist. Never discussed applicable clinical trials. Don’t recall any suggestion that I return at a later date. I have no idea why that was such a finite consult.
My experience has been just as Dr. Weiss describes. I have an excellent medical oncologist who questioned why I would seek a second opinion since he was recommending the “gold standard” of treatment for my diagnosis. My health care provider turned down my request for a referral and I paid out of pocket to see a thoracic oncology specialist at Johns Hopkins University. After meeting with my husband and me and reviewing my information, I learned that I was, indeed, getting the best treatment option (I had just started Tarceva). This gave me confidence in my local doctor. In addition, the specialist offered to be a continuing resource for me as my condition warranted. He helped direct me toward the clinical trial that I am currently on and has been very supportive and responsive to my emails and requests for advice.
I would also say that having “more ears” in the room is always a good thing. The information is often so overwhelming that it’s hard to take it all in. When my father was being treated for lung cancer in 2000, we discovered that each of the people in the room (my siblings) agreed on the general information and recommendations being given, but often remembered different specific details which, when shared, helped keep us all “on the same page” and understanding the advice a bit better. A tape recorder also helped remember what the doctor actually said rather than what we thought we heard him say (I think Dr. West posted some research results about a year ago on how that often works)
Thank you Dr. Weiss.
Thanks everyone for the kind comments.
RTC1: You asked, “how do you professionals overcome the deep fear of a prospective participant that he or she will be worse off in a trial versus with the “tried and true" treatment (so to speak), especially if the trial involves first or second line treatments? Great question. We don’t know, until we try, whether trials will be better, worse, or equivalent to “tried and true" treatment. We do, however, vet trials extremely carefully. You can read about this process at http://cancergrace.org/cancer-101/2009/11/21/how-to-vet-a-treatment-idea/ . The gist is that if we do our vetting right, and if we open the very most promising trials, then we should have every reason to believe that our trials are more likely to work well than standard therapy. Further, many of our trials, especially in early stage, administer full standard therapy PLUS something new that we hope helps; so, we don’t deny patients what is “tried and true" Finally, how good is “tried and true"? In lung cancer, our standard therapies are inadequate, leading to greater excitement to try something new and potentially better.
DianaJ: You asked, “How do I push for clinical trial in lieu of second line standard care? First, and most importantly, a clinical trial is not the right answer for every patient at every point in time. I’m one of the biggest trials believers that I know, yet more than half of the treatments I advise end up being standard stuff. However, if you don’t think that trials are at least being given a fair shake at being considered, the two best approaches are to either ask directly about them or to see an additional opinion.
Ts: You commented that you were told that you would run out of treatment options and that trials were never discussed. You commented that you were not invited to return for future consultation. I’m sad to hear this. You may wish to consider an additional opinion with another thoracic med-onc.
Thanks for the great reply to our questions. My mom has good performance status and her tumors are shrinking well so far. I will be able to refer back to your reply to talk with her further, and hopefully persuade her to talk to her onc., and look at what is out there in trials for SCLC after first round and before rad. in early 2012. I’ll also check out the link you included now.
I will admit that when I realized that she was going to be getting the same drug that was developed and used nearly THIRTY years ago, it was a complete shock. Your strong advocacy for trials and moving lung cancer options forward is very encouraging.
I have not heard of any hospital or academicians taking consultations for putting patients on clinical trials in India. Must look this up. The advice of going from a private practitioner to another for a second opinion was good, but most of us have no choice except to do that.
A very well written and informative article. Thank you Dr. Weiss.
Most of what I know about cancer care in India, I’ve learned on GRACE. So, with my apologies, I’m not educated enough about consultation in India to offer specific meaningful advice. I do think that even seeing another private practitioner could be of value–it can provide another perspective, additional education and other ideas on care.