Second Opinions!

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During a recent show on Oprah, Dr. Oz (famous medical doctor, surgeon and author) stated that only 10% of patients get a second opinion. Don’t you think that is a terrible statistic? I do.

When a patient has a dire medical situation, they begin a very intimate relationship with their doctor. The communication between the patient and doctor is of up-most importance. Here are the questions you should ask yourself regarding your doctor.

❧         Can the doctor explain the medical jargon in plain English?

❧         Does the doctor make you feel comfortable?

❧         Is he/she up to date on the latest information regarding your disease?

With childhood leukemia there are national studies being done and they set guidelines for treatment. Every time I went to the clinic for my daughter, I was always met with “this is the protocol” to almost every objection or concern that I had. When I called Cure Search and asked the oncology nurse about these “protocols” and if there is any leeway? She said that judgment is always expected and yes there is leeway within the protocol. Even with that information, I was told over and over again that the protocol is the protocol. What follows is an abridged version of our story illustrating how important second opinions really are.

For pediatric cancer go to  http://www.curesearch.org/ and for help with adult cancers go to http://www.cancer.gov/.

Emily was diagnosed with acute Lymphoblastic Leukemia in January 2008, she was seven years old. Her left leg was broken the day before diagnosis. Five weeks later Emily’s right leg was broken when her physical therapist wanted to test muscle strength by having her push her shin against his hand. This minor action broke her leg right in front of my eyes. At this point we found out that she had osteopenia, which is the beginning of osteoporosis. It became abundantly obvious that my daughter had brittle bones no matter what name they gave it.

In the following several months, Emily also broke bones in her feet.P9290005

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It is a known fact that steroids cause brittle bones or osteoporosis, especially with long-term use.

After months of searching I found a medical study, which stated that a lower dose of steroids could be given without compromising the survival chances of the patient. When I shoed this study to our doctor his response was  to say “you are taking your daughters life into your own hands!” Needless-to-say, at this point I finally sought a second opinion.

At the new hospital the service was great but as the months past we ran into the same problems we had with the steroid dose and continued degradation of Emily’s bones. Special scans revealed a left hip that had lost 22% of bone density and now the osteoporosis was spreading to her spine. If I did not take action she could end up bedridden and in extreme pain.

We tried to go to Sloan-Kettering in New York but insurance would not cover that. Instead we were able to get covered for a long distance consultation with them. In the consultation the doctor from Sloan said that I needed to act fast because of the bone loss in her hip and yes, they had treated patients to success with no steroids.  Armed with this validation we then traveled to a University Hospital in Gainesville Florida.

The first thing the Gainesville doctor stated was “I think I can help you.” Just hearing those words was such a relief! Long story short, he suggested that we skip the last two months of heavy treatment “because studies have shown that it is not advantageous to the patient.” What a shocker it was to hear these words. Emily and I were dreading these coming months because the treatment was taking a toll on her poor body. Many of the alternatives that we had used with much success for side effects were no longer working. In general Emily was feeling pretty bad. Not one doctor at our two treatment hospitals, ever mentioned the possibility of skipping the last two months of heavy treatment and going onto maintenance chemo.

When we left this appointment Emily was ecstatic that she was starting maintenance therapy (low dose chemo) right away. Just from that change, it was worth the six hours of round trip travel.  We could not have asked for a better outcome!

The point here is that Emily was an unusual presentation. No other child in her age group had the bone 100_5529issues that she had. It seemed that because of this, no one knew what to do about it. We went to (2) endocrinologists, (2) orthopedists, a podiatrist and about twelve different oncologists. Later I found out that locally the doctors were careful due to lawsuits. The University hospital had a cap on all lawsuits and because of this the doctors actually had a lot more freedom to just do their job instead of fearing lawsuits all the time. This difference was huge, in their communication, answering questions, and lessened stress level. Treatment was successfully completed in Gainsville.

Breast Cancer 2nd Opinion

A woman is diagnosed with breast cancer and told to start chemo. Her doctor wanted to wait and see how her tumor responded to chemo. He also said that her cancer was aggressive. If it is aggressive then why are we waiting? This is the question that she could not get answered. It seemed a waste of time to do chemo instead of a mastectomy. She decided to get a second opinion.

On her 2nd opinion she met with a well-known oncologist who recommended a mastectomy and no chemo. Per case studies this was the best way to treat her cancer. How simple is that! She followed that plan and is doing very well, years later and in good health.

Lance Armstrong

Lance Armstrong tells his cancer story in his book, It’s Not About The Bike. He describes in detail his diagnosis and first consultation. His story describes quite the whirlwind of diagnosis, money, tests, and research, which revolved around the cancer. He decides to get a second opinion and he details why. All of this is happening, while knowing that his cancer is very aggressive and spreading fast.

The second opinion went much better for him. He decides to get treatment with the second doctor. And of course he lives, and becomes an International Champion. (Don’t you love a happy ending?)

I loved his book because I felt like I was traveling the road of a kindred soul.

National Protocol

We did not hit it off with Emily’s first doctor from the beginning of her treatment. Because I was told that leukemia treatment follows a national protocol that every doctor uses, I thought there were no options. This was a huge mistake.

To this day, I really regret not getting a second opinion sooner. Now in hindsight, I can see that a national protocol does not matter at all. What matters is having a doctor that is willing to really care for his patient as an individual, while at the same time being a caring and understanding medical expert.

Conclusion

Don’t be one of the ninety percent of people who do not get a second opinion. If you have any misgivings regarding your medical team, go with your gut and take immediate action. Go get a second opinion, or a third or fourth. It could mean the world of difference for you.

It’s not About the Bike, by Lance Armstrong available though www.Amazon.com 

Comprehensive Cancer Care by James S. Gordon, M.D. and Sharon Curtin (best Cancer book ever!)

Last word of advice: please do not ever scream at your doctor. This kind of behavior does not facilitate a solution. All you are looking for are workable solutions and treatment with a team that makes you feel comfortable. Never scream at your medical team – take a walk, a break, a breath deep. Do not speak to your team again until you have formulated what problem you are trying to solve. Write it down, work it out and then have your meeting.

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Copyright © 2017 Deb Witter