Surgery isn’t always the best option, and the decision shouldn’t just lie with the doctor

[AussieNeil]

Billions are spent worldwide on surgical procedures that may not be effective. But how should we define effectiveness?

There is a growing acceptance that doctors should partner with patients to identify outcomes important to them. These might include avoiding complications and an unexpectedly long stay in hospital. But they should also consider longer-term quality of life, disability and survival.

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The right decisions in surgery are patient-centred, based on good evidence, clearly communicated and made in a supportive environment. Everyone – doctors, other health professionals, the patient, sometimes their family, and the public – have a right and a responsibility to be included.

Ian Harris, Professor of Orthopaedic Surgery, UNSW Australia and Professor Paul Myles, Chair of the Department of Anaesthesia and Perioperative Medicine, Monash University give their rationale in this The Conversation article: theconversation.com/surgery...

While this piece was written for the general public, not those with CLL, it covers even more important considerations for us, given our increased risk of post operative infection...

Neil

Photo: Kangaroo on the hop with growing joey in pouch that I was delighted to photograph last week. (Note the low slung undercarriage and the joey's feet hanging out - it hadn't had time to turn around after diving into mum's pouch.)

[starsafta]

I'm a firm believer in being considered a member of my medical team, learning as much as I can in order to be part of the process in making informed decisions about my own care. I carefully choose physicians who honor that scenario, fostering a relationship where we are all equal partners on the team.

When it became obvious that I had some form of small cell lymphoma, and I was in "watch and live," there came a time when many nodes in my neck began to grow more quickly. While he had his suspicions about CLL, my hematologist felt it was time to make a definitive diagnosis to determine which type of non-Hodgkin lymphoma I have. He sent me to a highly rated otolaryngologist to consider whether he could do a biopsy of one of the larger protruding nodes. It was clear that the otolaryngologist was highly competent. The two physicians recommended the procedure.

The two largest nodes were on either side of my neck, both situated between carotid and jugular veins. The recommendation to remove the larger of the nodes, because it was better situated between the veins, immediately transported me back 55 years to a class in neuroanatomy that was part of my training as a speech/language pathologist. As I studied all the veins, nerves, and muscles in the neck, I remember saying to a classmate that I would never have surgery on my neck. Here I was, all these years later, with just such a prospect.

I think my two physicians were a little surprised when I shared what I had promised myself as a student, particularly when I added that I was more afraid of the surgery than I was of not having a definitive diagnosis. I refused the biopsy, content to be in limbo until they figured out the next step. Both physicians graciously honored my decision, applying no pressure.

Realizing that the biopsy was no longer an option, my hematologist had an aha! moment and suggested that flow cytometry could likely do the job. I had already given blood in the lab prior to seeing him that morning, and happily agreed to return to the lab to donate more to the cause. Another prick in the arm seemed a far superior procedure over cutting into my neck. The flow cytometry test confirmed the diagnosis of CLL.

Much as I trust my medical team, I admit to being nonplussed that the doctors thought of surgery first. They are so accustomed to surgical procedures, particularly when the surgeon has a skilled hand and everyone has confidence in his ability, that they hardly think twice about the implications and impact on the patient. I have never been happier that I am my own best advocate, and that standing up for my own intuition and information base is one of my strengths.

[AussieNeil Partner Administrator in reply to starsafta]

Excellent personal example of why it can be so important to be your own advocate - remembering that as Abraham Maslow said in 1966, "I suppose it is tempting, if the only tool you have is a hammer, to treat everything as if it were a nail.", which is known as the 'Law of the instrument': en.wikipedia.org/wiki/Law_o...

It is something I observed in my professional career and your experience confirms to me why I shouldn't be surprised to hear of the surgical removal of lymph nodes in CLL/SLL patients, when they will shrink with treatment...

Thanks for sharing your experience!

Neil

[Ernest2 in reply to starsafta]

Great answer. Thanks for sharing.

Ernest.