Category Archives: Clinical Trials

A Second Opinion: How the Heck Do I Do That? And What If?

Second opinion? How do I  dare ask my doctor?  He seems so nice, he helped my mother, what makes me think he is wrong, what if he gets mad at me, how will it affect my care, what if the other doctor says the same?  All this goes through your head when you question the diagnosis or treatment plan you have just been given.  But the failure to ask for that second opinion will always haunt you, and may cost you a better treatment, or your life.

Nothing is more frightening than a cancer diagnosis–except perhaps the fear that you do not have the best advice or the best doctor. At minimum we want options and some control. You mayonder if your doctor really knows what he is talking about–you certainly have no way to judge, except to judge how he handles your request for a second opinion.

If the doctor proclaims that only he is qualified to treat you, and that no one else could possibly offer you anything else, the decision is easy.  Just stand up and walk out, getting all your records as you exit.  Your records are yours legally, of course, and should be in hand even when you work wonderfully with your doctor.

You may value your doctor’s advice, but know that your disease is rare and difficult, and that new information may have relevance to your case.  Can your doctor possibly have all the latest information at his finger tips?  And what about that article which you read on the internet or that your friend sent you from his hospital?

First of all, your doctor cannot possibly be up-to-date on all aspects of care and research into your disease.  One doctor estimated that if read two medical journal articles per evening, by the end of the year, he would be only 400 years behind!  And that was several years ago.

One patient friend through ACOR and its kidney cancer list serv has shared his approach, which has been effective and let him work closely with his doctor, while pursuing questions and potential treatments not readily available through his doctor in Australia.  I have made tiny changes to his letter, as it follows.  Good advice and the results, all relevant to us.

Tony starts: ” I’ll  outline how I start “delicate” discussions and get involvement from the likes of the hospital pharmacist. After working out exactly the treatment I want, I kick-start with a simple email, usually to my (general) oncologist. Importantly, I always attach one only medical study –  which is either current or past year.

My request for a treatment is always based on the conclusion in my cited study. I never offer my own opinion or view. I always keep the email short, logical and free of any argumentative material. This leaves the oncologist in the position of having to either (1) meet my request or (2) find grounds to reject the study itself or (3) to call in experts from other disciplines.

  I  learned that the medical decision making process mirrors life outside the medical profession where business managers and bureaucrats want that proverbial piece of paper in case something goes wrong – in this case it’s the well selected medical study (but finding exactly the right study can sometimes involve a lot of work). I find that
these general non-RCC specialists do respect precise RCC studies as they have no hope of keeping up with everything in every cancer type. Simple logic on basis of a reasonably current medical study is the art.

My simultaneous important method is little known fine print I found in our Oz hospital system where every patient is entitled to a second opinion from every relevant discipline. (Tony is in Australia.)

So where, an issue is complex, I respectfully ask for my med-onc’s opinion on whether we should get a second opinion. That gets a much wider team involved where the med-onc doesn’t want sole responsibility for decision making. All just normal human stuff where it’s not smart to make a decision contrary to a current medical study.

So far, I have pulled off four little feats:

The first was getting the urology department to reverse their initial decision to not neph me (they wanted to try to “reduce” my 10cm tumour with systemic drugs and otherwise reckoned I was at risk of karking it on the table).

Then, I got a thoracic surgeon involved with agreement for a rib resection that would have made me disease free (but surgery was called off the day before the scheduled date for sudden emergence of liver and lung mets).

Then, I got the hospital itself to pay for a shot of the very important zoledronic acid (Zometa) – Unbelievably, it is not on our PBS for RCC unless the patient has high blood Ca. Discussion continues on whether they will pay for the shot.
More recently, after one week into first Sutent round, I discovered from doing my own due diligence that another drug I must take for an unrelated condition dilutes the efficacy of the Sutent by about 50% which is unacceptable. My now well practised email / study / second opinion request procedure got the ball rolling resulting in an embarrassment of riches in a big team my med-onc pulled together.

Next week, for the first time I meet with a further member of my expanded team – an oncology radiation expert.”

 

Tony is obviously engaged in his own treatment, comfortable and motivated to read through medical articles, and choosing those which have impact on his treatment options.  He has done his homework  carefully and backs up the request with the medical article, i.e., in the physician’s language.  Tony puts himself in the equation, by asking if “we” should get a second opinion from an expert, partnering with his doctor in this request.  He has wisely calculated the needs of the doctor, and the system requirements. His results speak for themselves, and can have impact for the next patient the doctor sees!

You may think that this is a laborious process, and one which should not be necessary, but the reality is that it is both necessary and effective.  Getting the best possible treatment and making sure that your doctor supports you in this quest may save your life.

As a friend said, doing these kinds of things may save you someday from waking up dead…

 

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