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A mistake I'll never make again / by Jack West

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A mistake I’ll never make again

February 10th, 2012 - by Dr. Jack West

http://blog.lungevity.org/2012/02/10/a- ... ake-again/

I usually write from the perspective of a lung cancer expert, but for one day and one post, I’d like to step out and speak from a patient advocate perspective.

Though I spend a lot of time producing online content for patients and caregivers, really to enable patients to know enough to participate actively in their own care, I have confidence in what I know in caring for my patients and in the skills of the colleagues that I happen to work with. Probably because of that, I have had the confidence that other physicians know what they’re doing and will do a good enough job that I myself have often played the role of the historical “good patient” or “good caregiver” — in other words, I’ve assumed that any referrals were to a very good person and that they would do a great job. Unfortunately, I was reminded in the course of my wife’s medical care that not playing an active role can come back to haunt you, which is something I want to always remind myself of when the time comes that we need medical care and the stakes are very high. So a bit of background:

A few years ago, I and my family were having a nice reunion with some of my medical school friends on the east coast, when one who works as an endocrinologist noted that my wife had a visible thyroid nodule (she never quite leaves work, I guess). After the appropriate workup, it was found to be a thyroid cancer, which is certainly always of some concern but is extremely curable. She went through the typical channels and saw an ENT surgeon who was supposed to have a lot of experience in doing thyroid surgeries, and I didn’t try to second guess her referrals and didn’t reach out to colleagues to find an expert. Unfortunately, her surgery was complicated by the loss of not only her thyroid but also her parathyroid function, and the latter is a real pain. She went from being healthy, energetic, and on no medications to less energetic (though fortunately easier for me to keep up with, I suppose) and on multiple pills throughout the day, requiring doctor visits, and with some real uncertainty about the potential ramifications over what we hope will be decades of follow-up. And we’ve only heard from friends and colleagues who know more about thyroid surgery that while this complication is known to possibly occur, it almost never does. And the folks I now talk who care for thyroid cancer patients in my community don’t seem to object to the musing that this particular surgeon might not have been the best one for the job, even if they try to be diplomatic about that.

I don’t know if she’ll have any long term negative consequences, except for being reminded of this problem 2-3 times per day for the rest of her life. I don’t know with certainty that this complication wasn’t just due to happen once in a while to anyone, and that the risk wasn’t greater with this surgeon. But I feel haunted by the thought that I followed the path of least resistance rather than advocating actively to find the best person for the job. And I do realize that nobody has an easier time finding the best people in health care than someone already working in the field.

To be constructive about this, I’m vowing never to take it for granted that the person referred or the treatment recommended by the doctor is the best choice, at least unless I know that I can have great confidence in the expertise of that doctor. I see too many patients who do less well than they could have because they receive suboptimal surgery for lung cancer or receive questionable (and by that I mean bad) advice from a doctor about their treatment plan. I minimized my wife’s thyroid cancer because I knew how very curable it was, and I presumed that there wasn’t a need to question the default path she was on. We were burned by that, and I can only be thankful that the cost of that poor judgment wasn’t life-threatening. But I won’t make that mistake again, and I’d definitely advise others to do their homework, find someone who is very experienced in what you need, learn from the docs who really manage these issues who THEY would send their family and friends to, but not to try to be a “good patient” by accepting any recommendation as a presumed good one.

I’ll return to writing summaries of lung cancer content next time.

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Eric Byrne says:

February 11, 2012 at 7:09 am

Thank you Jack for sharing such an interesting account of your wifes cancer experience.I am sorry that you find yourself questioning the decisions you made in accepting the referral from a friend,for the surgery your wife received.Everyone of us at some time in our lives have made choices that with hindsight we might have made otherwise,your situation is particularly upsetting since in your own words,as you are in the medical profession,accessing information as to who would have been the surgeon of choice to perform this surgery which may have introduced you to another surgeon.Perhaps,you are being too critical of yourself,maybe this situation would have arisen if an alternative “better” surgeon was used?.

I have always had complete faith in all the medical practitioners who have treated my cancer,shopping around is not really the done thing in the UK’s NHS,I was simply told that the surgeon who performed my upper right lobectomy was the best in Scotland,Mr Jelawi,I know I am here today due to his skills.

It is true,if you are looking for a tradesperson such as a joiner or a plumber,its best to search out some recommendations from previous customers,I dont really think this is as easy in choosing a surgeon,how would a layperson identify the wheat from the chaff?,is there a league table pinned up on a staffroom wall in a hospital,that can indisputably show,who the top surgeon is

for a particular procedure?,I think such measurements are unlikely,due to so many variables.

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Dr West, thank you for sharing this. When they found cancer cells in the fluid when I had pneumonia, I asked my PCP for whom I have the greatest respect if it were he or his, where would he go. He said MDA in Texas or Orlando. I didn't even know MDA was in FL but since I am a FL resident it was difficult but doable.

I say I trust my oncologist explicitly and mean it when I say it. I would be lying, however, if from time to time I wish I had an oncologist with extensive experience in my particular "no tumor" lung cancer that has now packed its cancer cells and moved out of my chest wall to my abdomen. Barring such person manifesting him or herself, I have to say I'm not going anywhere else. I have struggled, however, when I hear the stories of others who have doctors that don't seem to be following the standard of care as I learn it here and on cancergrace. I usually keep my opinions to myself, however, unless the person seems obviously open to the notion of 2nd opinion. Coming from someone with your expertise, you give fair warning about seeking out the best.

Thanks again for sharing.

Judy in KW

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A very interesting post and I have learned this the hard way. When my father was diagnosed with lung cancer back in 2000, it was his surgeon who said that he didn't need any follow-up chemo or radiation. No mention of referring him to an oncologist and I believed. There was not this website then and to be honest, I did not go on the internet. I didn't even know his stage. Also I wasn't nearby and my relative who was totally wanted to believe he was cured and I couldn't question anything of her without her really getting upset with me.

When the cancer reoccured in 03, we were all shocked to say the least. When I spent the summer there, I got his records -- with great difficulty, I might add. Some things were not even completed. I did find out that he was initially Stage 2 and I don't remember if it was 'a' or 'b'. Anyhow, from that I learned to question and research medical professionals and treatment. I might also add that this sometimes has given me the label of a "nervous" patient from a couple of doctors. But I'd rather be labelled nervous and alive rather than compliant and dead.

Thanks for your post.

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Oh do I have to respond. Earl's lc was first dx'd after having a seizure and the occurence of a brain tumor. The pathology from the brain surgery indicated that it was lc and at that time another tumor was discovered in his upper right lobe.

Another surgery to remove that lobe. We then met with the onc. and the radiation onc. who both said no more treatment was necessary. Although, since he had had a medianoscopy and cancer cells were found in his lymph nodes and we knew it had metastized to his brain, why the he** was the thoracic surgery done?????

On our 3rd follow up with the surgeon, he asked Earl how his chemo and radiation were going. WHAT, they said he didn't need it. He said, well I was in there, and he needs it.

He ended up getting it, a lot of it. And BTW, Fox Chase Cancer Center advertised itself as having a 'committee' that reviewed each patient's treatment. Guess Earl was not committee worthy.

I don't believe that a better level of care would have resulted in a cure. It just bothered me that Earl was almost considered a throw away.

I am still angry.

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As they say, hindsight is always 20-20 but sometimes it is hard to make all of these decisions in the moment.

Gail - I was dx 2a in 1998 - just two years before your Dad. I live in a small town with one oncology group and one thoracic surgeon. Like your Dad, the surgeon pronounced me cured. I was concerned, and my PCP arranged for me to meet with an oncologist. She was kind enough to spend more than an hour with my husband and I, answering every question we had - and never sent a bill. She convinced us that follow-up chemo/rad would not be the wise course and might do more harm than good. I did try to do some on-line research myself, but really there were no on-line groups at that time like Cancer Grace or Lungevity where you could get so much information. I don't believe the oncologist was necessarily wrong - I think at the time it was more the standard than it is today not to do follow-up treatment. When I was dx again in 2008, my pulmonologist said that he thought it was a recurrence. My onc believes it was a new cancer. Either way, I've wondered if it would have made a difference if I'd had some treatment after surgery. I'll really never know for sure, but I made the best decision I could with the information I had at that time - which is really all any of us can do.

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