Value of a second opinion?

indenial · May 2016

I'm lucky that I live near 2 NCI hospitals... However, they are both out of state, so my insurance will not cover a visit for a second opinion. So I'm not sure what to do:

-Pay for the second opinion out of pocket (no idea how much this costs but I'm guessing around $500, which would really stress our finances).

-Find someone in state and on my insurance, but they would just be someone random, and not at an NCI hospital.

-Forget the idea of a second opinion entirely since it is way too overwhelming, I can't figure out how to gather all my records from different places (I have a phone phobia), and I really just want to get started on treatment so not sure I want the hold up waiting for another opinion.

Thoughts? How much did a second opinion help you, does it have to be at a major cancer center, and did it change treatment course at all?

zarovka · May 2016

I live in NM where we have one NCI hospital. I talked to 4 oncologists in state and two complementary doctors, also in state. Every one of them contributed in some way to my treatment decision. Two of them in game changing ways. I tried to go to MD Anderson for a second opinion. Insurance would have covered it but it would have taken 2 months to get in. Like you, I wanted to start treatment, so I did not do that.

In hindsight, I would not have done anything differently. I may go out of state later if I am facing progression or anything weird, but for now I have a good treatment plan and relationships with several doctors when I have questions. I never went out of state.

No doctor knows everything; I do think it is important to get a second or third opinion. But you don't need a rock star to get your treatment started. There are many good oncologists working outside of research institutions. ER+ Stage IV cancer is a pretty common cancer that many good doctors have a lot of experience with. If you ask around, you will find more than one good doctor in your state.

The flavor of the month in breast cancer treatment is Ibrance. I saw one oncologist who is very skeptical that Ibrance will turn out to work as hoped. In clinical trials Ibrance delayed progression but did not demonstrate conclusively that it increases survival. The second oncologist has many patients on Ibrance and believes that the clinical trials understate the effectiveness of Ibrance. I decided to go on Ibrance and it is going well, but I am very glad I got that skeptical perspective. Whatever treatment you decide, go with the doctor with the most experience with that treatment.

Through this process, I realized that I am managing my care. I am not handing this over to any doctor or any one else. The more conversations I have with intelligent experienced doctors, the more I learn and the better I will do at this. In that spirit, you need to read and re-read Bestbird's guide to Metastatic Breast Cancer.

I would strongly recommend including complementary care in your team. Some of the most important information came from the complementary/integrative doctors. It's not just about taking turmeric. It's about navigating a health care system controlled by insurance companies. You want an outsider on your team.

Research, pray and talk to (at least a couple) oncologists. When you feel at peace with a certain treatment protocol ... that's your protocol.

Money is a very important piece of your arsenal in beating cancer. If you have decent insurance, you should not have to do anything that is financially uncomfortable. I would get a second or third opinion, but I would not pay money to go out of state to get it.

>KNC<

3-16-2011 · May 2016

we have cancer navigators in our community who have directed me to resources including American cancer society funds. I wonder if a social worker or a navigator to help you look at options.

Good luck

Mary

exbrnxgrl · May 2016

For me, a second opinion did not change any tx decisions, but did give me peace of mind and confidence in the proposed tx plans. I belong to a self contained HMO and can get as many opinions as I want within their system, but had to pay for an opinion outside their system. Yes, it was pricey, about $800, ifmy memory is correct. We had recently lost my younger sister to uterine cancer, so my family was more than eager to help out financially. I realize I am lucky in that respect.

All I had to do to have all records, films and biopsy samples released was to sign some paperwork. My second opinion docs, at Stanford, were only 30 minutes away, so I chose to hand deliver everything, but they would have mailed it too. It really was very easy. In my opinion, even if you can't get to an NCI center, any second opinion outside your current mo practice is worth it, if only for peace of mind. Take care.

Bestbird · May 2016

I obtained a second opinion locally from an oncologist who came highly recommended. As a result of being impressed, I switched from my original doctor to him.

To find a "second opinion" doctor in your area, start by looking up oncologists on your insurance. Then whittle down the list to those within driving distance. As the third step, Google their name (in quotes), state your city and state, and look for reviews (i.e. "Dr. John Edison" Madison, WI reviews). If people have left comments, read them carefully. Then when you've whittled down the list, call the office and see whether they are accepting new patients. And you can tell a lot by how you are greeted on the phone.

I highly recommend a second and even a third opinion - whatever it takes to do it.

JeninMichigan · May 2016

I can't say enough about a second opinion since I believe it totally made the difference in my treatment and outcome. Your current oncologist's office should send your entire record including all office notes, tests results, scans.... everything to wherever you choose to go. You should not have to gather anything. Even if it was just a different oncologist, I think it is worth a verification or validation of your treatment plan. Do you have a university hospital covered and nearby? My first oncologist told me basically that he would treat me for quality of life and that my chemo would be easier. My current oncologist told me she was treating me as aggressively as if I had stage II cancer and I would life for a long time. First oncologist said Adriamycin/Taxol/Cytoxin/Herceptin and my second oncologist said she would not give Adriamycin for Her2 due to heart issues and that I would need Herceptin for a long time so she wouldn't risk the added hit to the heart. Anyway, just a whole different treatment option and I seriously think it save my life. Not only that ... a different spin. Not doom and gloom but hope!! Your current oncologist may be fine but it is worth a second look. This is stage IV cancer!!!! Make sure you have confidence in your medical team!!!

Jennifer

dlb823 · May 2016

indenial, I am strongly in favor of second opinions at NCI-designated facilities. The ugly experience detailed on my bio page should leave no doubt why. But I also get the concern about paying out of pocket. One thought I had that may not have been suggested above -- Could you possibly call both of the two closest NCI-designated hospitals, tell them your situation, and ask if they might be able to recommend an oncologist in your area? I have found in general that NCI-trained docs are far more thorough than those who have never been at DF or MDAnderson or Stanford or UCLA, and that is one of the criteria I now use when looking for any local specialist. Have they had the kind of rigorous training and performance expectations, where everyone is brilliant and no stone gets left unturned? When I needed RT following my mx + Diep @ UCLA (which is 3 hrs. away), UCLA was able to direct me to a very highly thought of former UCLA resident who is now at a local hospital, and the very fact that the recommendation came from UCLA and they were in the loop on my care, gave me the reassurance that she was doing everything just the way they do -- especially since she was also in touch with my PS @ UCLA who was concerned about my follow up results.

Right now, I see both my UCLA (lead) onc several times a year, as well as a very experienced general onc for monthly injections and follow up. I love my local onc and his practice for many reasons, but I would never trust my care to them alone because the lack focus on bc compared to UCLA is blatant. For example, both in 2008 when I needed chemo, UCLA was way ahead of the curve re. RX'ing TC rather than AC+T, and in 2015, they were ahead of the curve again in getting me on Faslodex+Ibrance, which wasn't FDA approved until several months later. I also had Diep recon @ UCLA when they were one of the only institutions in the country doing it.

I should also add that most of the time when women go to an NCI-designated facility, they are very happy with the level of expertise. But I have occasionally advocated for someone to go to one when I was concerned about what they were being told, and for one reason or another they were disappointed with or didn't like the oncologist they saw. So for that reason, and also because it will be out of pocket for you, I will stop short of saying it's a must. But knowing what I know from my vantage point and experience, I would find a way.

A couple of other thoughts -- Can you possibly appeal to your insurance for a one-time second opinion? I know others have done that with Kaiser, for example. It was a process, but it sometimes can be done. Also, have you called and ascertained exactly what the cost would be w/out insurance? Often cash patients get a 30% or more break, so I would certainly find that out before making a decision.

Good luck, and please let us know what you decide! Deanna

BrooksideVT · May 2016

Indenial, I would add to Dlb's post that many (not all, by many) hospital webpages list physicians by specialty, and also list each practitioner's medical school, residencies, and fellowships--an easy way to find someone in your area with the background you want. Not only will an NCI-trained physician have the training all of us want, but (bonus points) will likely have maintained contact with some state-of-the-art colleagues. A library with a good-sized research area will also have a publication that lists the same info.

One other point--some insurers, despite limiting nearly all out-of-network providers, do allow certain specialty hospitals for specific conditions, cancer among them. You might try a phone call.

exbrnxgrl · May 2016

Deanna has made some good suggestions. I will add that appeals to Kaiser (my provider) are generally only successful if they have no specialist in your disease/situation. Since they have legions of oncologists, it would be unlikely.

$800. at Stanford was the cash discount!. Money is a tricky thing. We say it should be no obstacle when it comes to our health, but the stress that financial difficulties cause can be very detrimental to our health, family and life in general. That said, make every effort to get a second opinion somewhere

Value of a second opinion?

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