Clients are constantly asking me if it is necessary for them to seek a second opinion following a cancer diagnosis and/or whether they should wait to see how their current doctor's
treatment plan works out first. Most people seem to expect me to dive into an analysis of the severity of their disease, the resume of their current doctor, and other related factors. But, my answer is consistent and pretty simple: (1) you should always get a second opinion and (2) you should do it as soon as possible.
I say this to clients who have common cancers as well as those with rare forms. I say this to young clients and to older ones. I say this to those who are at top hospitals as well as those who are dealing with a local oncologist. In my experience, it is extremely rare that oncologists will agree about every aspect of care. Some opinions will be drastically different, and some may be distinguished solely by looking at the minutia. Sometimes, the doctors just get it wrong. I have seen clients diagnosed with the wrong type of cancer -- rendering it impossible for an optimal treatment to be administered. I have seen clients who were told they had cancer and needed immediate treatment only to find out that they never had cancer at all.
In any event, when it comes to cancer care, you should leave no stone unturned. It is possible that your doctor is unaware of or does not have access to the newest forms of treatment. Those treatment options may be more successful, have fewer side effects, etc. It is also possible that doctors in the field may have different stylistic approaches that manifest themselves in different treatment approaches. For example, an aggressive doctor may feel like you should throw everything at the cancer (and take on the resulting side effects head on), while a more conservative doctor might recommend trying one option and seeing how it works before trying anything else. Some doctors believe in exhausting all protocols before trying something deemed experimental. Others want to take risks on the newest (although not fully vetted) techniques where standard protocols have not proven to be all that effective. None of these approaches is necessarily right or wrong. But, they will lead to different recommendations and, in many cases, different outcomes. By understanding the different options, you can decide for yourself which plan is most in line with your own desires and which plan has the greatest likelihood of success.
Even doctors at the nation's top hospitals will often follow different standard treatment protocols. The best doctors tend not to be surprised when you seek additional information elsewhere. Some welcome it and the accompanying opportunity for them to learn what other experts are doing around the nation. At the very least, an experienced and competent doctor will be able to have discussion with you analyzing the different opinions and explaining why he/she thinks his/her approach is superior. A doctors' attempts to discourage a second opinion should be a huge red flag. Most times, this indicates an insecurity or fear that the proposed treatment is not the best one available to you. That is even more reason to go find that other treatment and study up on it.
The timing for seeking a second opinion is extremely important. You should be open to reaching out to other doctors at any stage in your treatment -- especially if something changes and you feel uncomfortable about what you are being told. But, it is good practice to seek at least one second opinion as close to your time of diagnosis as possible. Often, treatment options available to you are mutually exclusive. So, for example, a doctor might recommend a surgery that is not possible if you have already been started on a chemotherapy. Or, a doctor might recommend that you obtain radiation treatment prior to surgery -- a recommendation that is rendered moot if the surgery has already taken place. Finally, certain treatments can disqualify you from clinical trials. If you are a trial candidate, you will want to find that fact out before deciding whether or not to start the recommended treatment. Again, these are all questions and conversations to have with your doctor. But, you need to know what to ask. You need to know what is out there. Knowledge is power.
Once you have committed to seeking a second opinion, you want to make sure to engage a doctor who specializes in your exact diagnosis. You want someone who has lived and breathed your cancer cell type for his/her entire oncology career. You also want someone who is likely exposed to the newest, most progressive treatment options available. It is tempting to just call up the top cancer hospital in the country (or your state), ask for their relevant specialist, and go from there. Admittedly, this is likely to get you a more sophisticated analysis than what you would get from your local hospital or oncology team. However, this is your life. So, you should strive for even better. Even the top hospitals have their strengths and weaknesses. No one hospital is considered the leader for every specific cancer diagnosis that exists.
A good and relatively easy place to start is the national rankings published by news organizations such as the US News and World Report list that comes out each year. But, you need to be specific. If you search for cancer, you will be shown the "best" cancer hospitals in the nation. This list will nearly always begin with MD Anderson in Texas and Sloan Kettering in New York and then go on from there. This information is helpful in that you might find an institution on that list that is located in your home state or region and then can investigate the relevant specialists who work there. But, to make the most out of your search, you should also search for the top-ranked doctors in the area of the body from which your cancer is emanating. So, for example, if you have been diagnosed with lung cancer, search for the country's top pulmonology institutions. Then, cross-check that search with the top cancer hospitals. Or, find the best doctors at those hospitals and see if any of them are also oncologists. The intersections of these searches should provide you with a pretty good starting point.
Another way to locate individual doctors of interest is through publicly available databases such as Castle Connelly. But, those results can be a bit subjective. I personally like to delve into the published research on a particular disease and see who is out there doing the leg work. There are hundreds of respected journals covering all types of cancers and treatments. Doctors who are conducting trials on new treatments are constantly publishing the results of those studies. If you can get a sense of which individuals are knee-deep in the latest research on your disease, you will start to understand where the most progressive learning is happening. Wherever that is, that is probably where you want to be. Finally, you may gain useful information regarding second opinions from organizations or associations dedicated to your disease (e.g. The Sarcoma Foundation of America). Often, their websites will link to information about the leading doctors in the field. This is especially true for rare cancers for which there may only be a handful of qualified doctors in the country.
Remember -- the purpose of a second opinion is not to pick up and relocate to a far-away state (or land) for treatment. The idea is to just take an hour or two to hear what someone very experienced in treating your disease has to say. So, try not to get too caught up in the worry over having to travel, payment for the consultation, etc. Many insurance policies cover at least one second opinion. Often, the top hospitals offer subsidized lodging for patients, and you will probably only have to be there for one or two nights. If finances are a big concern, certain airlines and organizations offer inexpensive or even free flights to those travelling in furtherance of their cancer care. Finally, some doctors are willing to give second opinions over the phone.
In fact, some of the most prestigious institutions are now offering a flat-fee service where you can send in all of your medical records and their team will review everything and issue a second-opinion to you via the internet. It is not cheap, but it provides a high-level review without having to leave the comfort of your home. I personally think it is a wonderful way to make high-level care available to more people. Institutions offering this service include Dana Farber and the Cleveland Clinic. If there is confusion about the actual pathology of your cells, labs at certain top hospitals will also review the pathology slides for you and render an expert opinion on the type of malignant cells present.
Once you have chosen a doctor for a second opinion, you will need to set up your appointment as quickly as possible. To expedite this process, you should obtain all available medical records from your current physician and have them organized and ready to fax out upon request. This includes any imaging reports, blood test results, chemotherapy flow charts, doctors' notes, etc. As your appointment draws near, make sure to draft questions for the doctor to better insure that your consultation time is productive. You should ask what his/her treatment recommendation is and why. You should ask whether such treatment is unique to his/her particular institution or can be administered anywhere. You should ask if this doctor might be willing to work in coordination with your current doctor. You should ask anything and everything that comes to mind! Clients often ask me if it is better to hold off on sharing the information you have from your current doctor -- so as not to influence the second doctor's opinion or steer him/her in any particular direction. While I understand that line of thinking, my inclination is to give up as much information as possible upfront. After all, this is not a game of "gotcha" -- this is an attempt to bring another educated, helpful physician into the mix. If there is information that might be important or useful, you want this individual to consider it. At the end of the day, you chose this person because you felt he/she is smart and competent. I believe you should hand over all of the tools that will assist in harnessing those traits to your advantage.
Following the second opinion, you will probably either feel more or less confident in your original treatment approach. Either way, you will be equipped with more information and, therefore, more power. Use that power wisely. Go back to you original doctor with follow-up questions to try to resolve any discrepancies. Consider switching doctors if the new one earned your confidence. Talk the results over with loved ones. And then proceed with the satisfaction of being an informed advocate for yourself. Creating new choices can be hard -- but, in this case, ignorance is NOT bliss.
Amanda
Amanda Pollok is the president of AM Healthcare Consultants, LLC, a consulting firm for oncology patients at all stages of diagnosis and treatment. For information about AM Healthcare Consultants, LLC, please visit their website at amhealthcareconsultants.com.