What's Wrong with Healthcare?

Thinking inside and outside of the healthcare box. After 41 years of family practice, what's happened to Canada's healthcare system?

Friday, September 07, 2007

The Obsolete Second Medical Opinion

Chapter 2: This is Our Opinion, and It’s The Only One You Get
Neuroendocrine cancers are uncommon, and primary lung neuroendocrine cancers are actually quite rare. So much so that the neuroendocrine cancer “Team” met only once a month in Calgary. We were assured that we would be meeting with a team of specialists that were prepared to answer all questions. My patient, Mr. LD, asked if I would attend this conference with him since, as a lay person he was quite unfamiliar with the medical jargon and wished my presence to assist him in addressing all the pertinent issues. I consented; as much from curiosity as from allegiance to a former patient, I must confess.
We were first interviewed by a nurse who took some medical history and a blood pressure. Next, a resident in neuroendocrinology came into the room and took another history and did a cursory examination. This was followed by a senior resident in general surgery who again took a history and did quite a complete examination. By this time one and one-half hours had gone by. Finally an endocrinologist that I had known for years (a very nice elderly man) and a surgeon came into the room with the aforementioned residents in tow. A few additional questions were asked for clarification and the patient was told he had very few options. The situation and the disease were explained to him in detail, and he was told that they could offer an injection that would help control his symptoms but would have little if any effect on his cancer (his symptoms were already controlled with codeine over the past three months). The patient enquired about chemotherapy, but was told this would likely not be helpful since the size of the one liver lesion was out of reach of any chemotherapeutic agent, and generally, these tumors were unresponsive. The endocrinologist said he would check with the Edmonton cancer clinic, but was not hopeful. The patient enquired of other centers in the world but was told that medical information was shared world wide, and the information being given to the patient was recent and up to date.
I had done considerable research before this meeting (I had months to do it) and the literature stated that many patients with neuroendocrine cancers died of the effects of the tumors produced by the cancer rather than the cancer itself. I asked the surgeon regarding a “debulking” procedure that may dramatically reduce tumor load and thereby reduce hormone secretion (one measurable hormone was ten times higher than normal and another one was one hundred times higher than normal and ninety percent of his tumor load consisted of the one liver lesion). The surgeon gave me a less than tolerant look and stated there would not be enough liver left for the patient to survive the surgery. Still looking at the idea of reducing tumor load, I asked about embolization of the major tumor. Liver cancerous tumors are usually supplied by branches of the Hepatic Artery; whereas the liver proper is supplied with nourishment and oxygen primarily by the Portal Vein. I was told that it was an interesting idea but there was no initiative taken to arrange an interview with a specialist in embolization. After a total of almost three hours, the endocrinologist wrote the prescription for Sandostatin and we were exited from the room (as mentioned previously, I had been controlling his symptoms of dysentery very well with a small dose of codeine).
The ride home from the meeting was very quiet. After some twenty minutes Mr. LD turned to me and said; “You know, they were very nice, but I think they just sent me home to die and quite frankly, I’m not ready to die! Could you possibly do some digging for me and see what other treatments are available out there and where they are offered? I will pay you for your time, even a retainer if you wish”. By this time I was plenty unhappy with what had transpired and already decided to look further into the matter privately. Indeed they were very nice, but the meeting was lacking good scientific medical data. And what happened to the idea of a second opinion, especially in life and death scenarios? The very least they could have done was give us the names of Cancer Centers that may have more experience in this rare cancer and how to contact them!
Next edition: Searching for information

2 Comments:

Anonymous Anonymous said...

Al,

I have a rare neuroendocrine lung cancer. Thanks for caring about this issue and posting this.

The following online support groups may be helpful:

carcinoidnetscanada@yahoogroups.ca

Lungnoids@yahoogroups.com

It was so nice of you to accompany your former patient to his specialist appointment. What a great doctor you must be! --Anonymous

9/9/07 7:21 AM  
Anonymous Anonymous said...

Hi Al,

I am actively in touch with many Canadian NeuroEndocrine tumour patients and am a co-moderator on canrcinoidnetscanada@yahoogroups.ca.
I am a mid gut carcinoid patient diagnosed seven years ago, but I have had carcinoid for possibly three times as long as that.
My name is Maureen and I live in Toronto.
Please email me at maureenc@sympatico.ca at your earliest convenience.
I would also be comfortble speaking with you on the phone.
All the best,
Maureen

23/10/07 7:20 AM  

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