Why I Believe in Second Opinions for Major Medical Issues

In a nutshell, my reasons for believing in second opinions are 1) medical opinions differ and 2) people make mistakes.

We may think of medicine as a settled science, but often that is not the case. Much of medicine is a combination of universally accepted medical facts… and opinions. You’ll see how this plays out in the experiences I describe below. Getting a second opinion will either confirm your initial medical opinion (diagnosis and/or treatment plan), or if it differs, it will supply you with more information to consider.

When the type of medical issue is cancer-related (or potentially a cancer diagnosis) I highly recommend second opinions from M D Anderson. MDA treats only cancer, whereas other hospitals treat many health issues. Focusing solely on cancer, and seeing so many cancer patients gives MDA more experience in diagnosing and treating cancer. This is helpful in general, and especially in rare cancers. In many cases, getting a second opinion of your pathology diagnosis simply involves having your local hospital send your pathology to MDA for them to re-test it (without having to travel there). Getting a second opinion on your treatment plan would likely require that you go to MDA for testing and an in-person consultation.

MDA addresses second opinions in their article titled Second Opinions and Second Chances. In it, they conclude “A 2011 review of some 2,700 patient cases revealed that in 25%, discrepancies between the original pathologists’ reports and MD Anderson’s were found.” 

The following outlines my experience, and the experiences of people I know. (I’ve heard other reports of people who had similar experiences to what I describe below—however, since I don’t know them personally, I did not include their stories.)

MY EXPERIENCE

A local hospital diagnosed me with triple negative breast cancer. (I’ll refer to this hospital as “Hospital #1”). Someone I know highly recommended a particular oncologist to oversee my care. He was with a different local hospital that I will call “Hospital #2.”  So, I scheduled an appointment with him. Before this appointment a relative who is a physician heard about my cancer. He called me and very strongly recommended that I go to M D Anderson for my care. At first I pushed back for financial reasons. (It would have saved me money to stay in network. The insurance I had at that time only covered 70% of my out-of-network expenses.) But he insisted that because of the type of breast cancer I had, my best chances of survival would be through MDA. So, I went to MDA.

MDA repeated my mammogram and, in the process, they found a 6mm spot on my left breast (the tumor was on my right breast). Local Hospital #1 had not mentioned anything to me about this spot on my left breast. Thankfully, after further testing, MDA determined that this spot was benign. I later learned from my primary care doctor at Local Hospital #1 that there was no mention on their report of this 6mm spot on my left breast. Hospital #1 had totally missed this spot! Thankfully it was benign. But, what if it hadn’t been benign?!

MDA informed me that I needed chemo, surgery and radiation. My MDA doctor said chemo is a science—not an art—so it didn’t matter where I had my chemo, as long as I was given exactly what MDA recommends.  She recommended that I have the chemo in the city of my home, the surgery at MDA, and if possible the radiation at MDA. She gave me a paper with MDA’s recommended treatment plan for me (outlining the types and amounts of chemo and the recommended schedule to administer it). Chemo was the first part of my treatment which included me getting the “lifetime limit” of 3 chemos. My task now was to find a doctor back home who would administer this exact chemo treatment plan.

And, this is where the differences in opinion really began to surface…

I already had an appointment scheduled at Hospital #2. I also scheduled appointments with oncologists at Hospital #1 and another hospital (“Hospital #3”). I figured it was best to have other options, if for some reason, I didn’t think the recommended doctor was a good fit for me. Here is what happened in the order of my appointments:

Hospital #3 – Doctor agreed with MDA’s treatment plan. I tentatively scheduled chemo to begin that Friday just to have an “ace in the hole” but I explained that I had a few other appointments before I would be certain about which hospital I would choose.

Hospital #2 – (This was the doctor who had been highly recommended to me.) This doctor strongly disagreed with MDA’s treatment plan! He said he would recommend giving me the same chemo but less, and on a different schedule. He said he had patients with permanent heart damage and permanent neuropathy as a result of getting that much chemo.

Hospital #1 – I had an appointment scheduled with the doctor at this hospital who was actually head of the oncology department, but it wasn’t until that Thursday (this was a Tuesday). I went there a few days before my scheduled appointment and asked the Oncology Navigator if I could get my appointment moved up to an earlier day. That was my last of three appointments and I was hoping to wrap things up so I could make a final decision. The Oncology Navigator said I could not see the doctor earlier because he was out of town, but recommended another doctor there who might be able to see me that afternoon. I gave her the written copy of MDA’s treatment plan, and she told me to wait while she went to talk with the doctor to see if he could meet with me. She returned soon after and said, “He said to let you know it is a waste of your time and a waste of his time to meet with you—because he would never consider giving you this much chemo!” I left and I returned a few days later for my originally scheduled appointment. When I met with that doctor I did not tell him what the other doctor in his hospital had said. He asked to see the treatment plan MDA recommended. Then he said, “If you had never gone to MD Anderson—if you had come straight here—this is exactly what I would have recommended.” Two doctors in the same hospital (with one doctor being the head of oncology) and they had very different opinions!

Bottom line… MDA and two doctors at local hospitals recommended one plan, and two other local doctors insisted that MDA’s recommendation was not the right plan.

I chose to have my chemo through Local Hospital #1 with the doctor who was the head of oncology. I was given MDA’s recommended lifetime limit of three chemotherapy drugs—one of which is extremely toxic. I accepted the fact that I could end up with permanent heart damage or permanent neuropathy—but (as one doctor explained to me) this is what is necessary to decrease my risk of death! That doctor also commented that with triple negative breast cancer you have to “hit it with all you’ve got.” I asked myself, “In six months when I’m meeting with my doctor would I rather hear him say ‘you have permanent heart damage’  ‘you have permanent neuropathy’, or ‘you are dying.”  After putting it in perspective, my decision was easy! 

The chemo was difficult. I actually made a list of the side-effects I had and there were 15 (not all at the same time, thankfully). After chemo, I had surgery at MDA. Then I had radiation at Local Hospital #3. MDA was involved at some level in all of my treatment. And, I went to MDA numerous times during my treatment for tests to gage how I was progressing.

It has been 10 years since I completed treatment. I thank God that I am still here and that so far I have not had any health issues with my heart or neuropathy. Also, I thank God that I don’t have to wonder if I made a mistake by getting all of that chemo (in other words, did I take in more chemo than needed), because interestingly, when MDA did the surgery and removed the tumor, the pathology report came back showing that the tumor was 99% dead cells and 1% live cells. Because the 1% was in the center of the tumor, it was not an issue. And, because 1% was still live, if I had decided on less chemo (as recommended by two of the local oncologists), that 1% would have been higher. I have no idea what my outcome would have been, or if I would even be alive now, if I had gone with the recommendation made by two of the local doctors.

THE EXPERIENCES OF FRIENDS

Friend #1 (“M”)

M went to Hospital #1. She was diagnosed with breast cancer in her right breast. Surgery was scheduled. Then, her friend highly recommended she get a second opinion at MDA. She did. They repeated the test. They discovered that she also had a tumor in her left breast and it was malignant!  This was totally missed by Hospital #1. It turned out that instead of having just a lumpectomy on her right breast (the treatment plan recommended by Hospital #1), she needed a double mastectomy. She had this surgery at MDA about 7 years ago. What would her outcome have been if she had followed the recommendations of Hospital #1?

Friend #2 (“H”)

H had a very small tumor. Another local Hospital (“Hospital #4”) diagnosed it as triple negative breast cancer—which generally requires a very aggressive treatment. She had her pathology sent to MDA for a second opinion. They determined that her tumor was not triple negative. Hospital #4 later agreed with MDA’s conclusion on the type of tumor H had. This changed the course of the treatment she received.

Friend #3 (“N”)

N was a neighbor of mine. He was diagnosed with medullary thyroid cancer in his early 60s. He had care at several different hospitals and was eventually told there was nothing else they could do for him and said he had about 6 months to live and they recommended he go to MDA to see if they could help him. He then went to MDA. MDA had a trial med for his type of cancer. He qualified for the trial, and it totally changed his prognosis. About 7 years ago he was told that he should live another 20 years.

Friend # 4 and #5 (“H” and “V”)

Coincidentally, two friends developed colon cancer at the same time. They both had the same doctor. They both had surgery at Hospital #3. Both received post-surgery pathology reports saying that their lymph nodes that were removed were all clean (no cancer). They both had their pathology sent to MDA to re-test it. H’s report came back confirming Hospital #3’s finding was correct. However, MDA found metastatic cancer in V’s lymph nodes. Afterwards, the local doctor admitted that MDA’s diagnosis was correct. V was then given chemo. Had she not gotten a second opinion at MDA, her metastatic cancer would have gone untreated! But, she had the needed treatment and now (2 years later) is doing fine.

Friend #6 (“F”)

F was diagnosed with a rare stomach cancer and receiving local care at Hospital #1. She asked her oncologist if the diarrhea she had been having for about a year was connected to the cancer and was told it was not. Also, her ankles were swelling. She was also told this was not a possible symptom of the cancer. However, just a simple internet search on MDA’s website confirmed that these two symptoms were possible symptoms of this cancer! Also, the local doctor prescribed chemo pills. They were effective for awhile, but stopped being effective after the doctor decreased the amount F was receiving (because one of her blood tests showed that one of her counts was too low). She decided to go to MDA for a second opinion. The doctor she met with there had actually written a textbook for this type of rare cancer. MDA’s doctor said that even though her count was low on one test, that could have been a temporary low, and that she needed to be checked regularly to see if the count improved—and that if it improved the amount of chemo could be increased. F was re-tested. Her count was fine! Chemo was increased, and the tumor once again began to shrink.

AN IMPORTANT NOTE REGARDING INSURANCE

Would your current insurance plan (or the plan you are considering) allow you to go to M D Anderson if needed? I know several people who thought MDA was an option for them, only to later discover that MDA was not covered by their insurance.

To confirm whether or not MDA would be an option for you, you can call MDA’s Managed Care Department. Their number is 713-745-9760. Ask if the insurance plan you have (or are considering) has a “contract” or “relationship” with MDA. And, it is important to note that if the insurance plan you are checking has a “relationship” with MDA but not a contract, normally three things are still required for you to be covered: 1) a referral from your doctor to begin the process; 2) your insurance provider will need to give an authorization for you to go out of network (which includes your insurance provider accepting both the language of the request from the doctor who referred you and the rates MDA would charge them; plus, 3) authorization from MDA.

What about hospitals that have a formal “affiliation” with MDA? This alone does not guarantee getting services at MDA. Also, with regard to hospitals that are affiliated with MDA, I asked one such local hospital who does their testing and pathology—do they do it or does MDA test the pathology and look at the scans, etc. I learned that the local hospital does this, not MDA. My concern with this is that, if you recall in the examples I previously cited about the experiences I and others had at local hospitals vs. MDA, incorrect test results was the primary issue where mistakes were made by local hospitals. While an affiliation with MDA is better than no affiliation, make sure you understand exactly what that does, and does not, mean.

If you are on Medicare and want coverage that would allow you to go to MDA (and any other providers nation-wide that accept Medicare) you can accomplish this with “traditional Medicare” and a “supplement.” With traditional Medicare and a supplement, there are no “networks.” You would have to pay a monthly premium for this coverage but doing so would also give you the most freedom, including the ability to go to MDA if needed.

 (Also worth noting, regarding plans that restrict you to a network but say that if you’re traveling you can get out-of-network care… most will not cover your out of network expenses unless you have an “emergency”—and only until you are stabilized and able to return home for in-network care/follow-up.)

Bottom line… take the time to do the research about your health insurance so you will know exactly what is and is not covered, and what options you have.