MY DIAGNOSIS AND PROGNOSIS
My prognosis is very likely to be very good, despite the ominous sounding diagnosis — a small well-defined pancreatic neuro-endocrine tumor (PNET). Today, Thursday, I had surgery at Johns Hopkins to remove it. It wasn’t causing symptoms (that I’m aware of).
A PNET may or may not be cancer depending on your definition of cancer. In any case, it’s not what people normally think of when they hear the word cancer, particularly pancreatic cancer. You can read a “layman’s guide” to PNETs by Matthew Dallek at Slate.
I don’t generally blog about my health, in part since it takes a lot to stop me from blogging, but this is blogworthy, I think for a few reasons:
- There are many analogies between dealing with early stage climate change and dealing with early stage diseases, analogies I’ve often made myself. As you can imagine, I’ve thought of a few more in the last several weeks.
- Steve Jobs had a PNET, too, so there is a lot written about them for a general audience — and a lot written about Jobs’ 9-month delay in seeking conventional treatment (i.e. surgery).
- It is Rare Disease Day. No seriously, click here. If you can’t write about a rare disease today, when can you? [And yes, my surgery was scheduled today purely coincidentally.]
Analogy-wise or coincidentally (take your pick), Hopkins uses a consensus-based approach for cases like mine. So every Tuesday night, one of the doctors presents the case to the entire multi-disciplinary pancreatic cyst team — a big group of gastroenterologists, surgeons, pathologists, researchers, radiologists, and others — and they come up with a recommended course of treatment. [A key reason this team exists is that CAT scans and the like are so good now they pick up a lot of cysts and tumors at an early stage incidentally — as in my case and Dallek’s — and folks need to figure out what to do with them.]
The doctors say my prognosis is very probably very good — won’t know for sure until they remove and examine it. But then the prognosis was apparently quite good if I didn’t do anything — but there was chance it would metastasize, so the recommendation is to take it out. Can’t argue with the consensus, can you?
So one big difference between this PNET and global warming is that global warming is highly likely to be fatal to a livable climate and modern civilization if left untreated. Still, I think it safe to say that most people would take it out, but then most people act considerably more risk averse toward worst-case scenarios in their own life than society is acting towards the business-as-usual scenario of unrestricted emissions of greenhouse gas.
The other reason most folks would take this out is that Steve Jobs delayed removing his. Jobs had a PNET, too, though his may have been symptomatic and functioning (i.e. releasing hormones) and mine does not appear to be (it was discovered incidentally). His was at the head of the pancreas, which required far more extensive surgery. Also, he put off surgery for 9 months doing alternative medicine, which may or may not have contributed to his death — there is huge controversy over that.
I’m more of an integrative medicine person (where you add some alternative medicine to regular medicine). My sort of thing would be “Modified Citrus Pectin,” for there is a fair amount of scientific support and not a lot of downside — see the literature review at the MD Anderson Cancer Center website if you know someone who is worried about metastasis. Interestingly, I wouldn’t have heard about “Modified Citrus Pectin” if not for this interesting article, “Did ‘Alternative Medicine’ Kill Steve Jobs?” by the editor in chief of Integrative Medicine: A Clinician’s Journal.
It is simply impossible to know whether Jobs’ delay contributed to his death. You can read one of the blog posts that started the debate at quora (you must sign up) by Ramzi Amri, MD/PhD Candidate, MGH Surgical Oncology, who argues the delay may have been fatal.
I certainly have no idea whether Jobs’ delay contributed to his death — but it is quite clear from published interviews with Jobs and his close friends that Jobs himself thought it did.
So as you can imagine, there aren’t many folks who leave these in anymore. Mine is small — a half inch or 1.3 cm (whichever sounds smaller). Dallek’s was the size of a “large tennis ball.” I’ve never seen the size of Jobs’ PNET published.
That is another difference between this PNET and global warming. With the PNET, we have the benefit of seeing what happens when other people do or do not remove them. With global warming, there is no such information. I’m pretty certain that if people actually saw what climate inaction does to a planet with 9 billion people, we’d have a whole lot of action.
I got a laparascopic distal pancreatectcomy at Johns Hopkins. Your post-surgery prognosis is probably a product of your surgeon’s competence and the hospital’s likelihood of not making a mistake. Apparently 1 hospital patient in 4 (!) is subject to a major mistake.
That’s why I had the surgery done by the same folks who pioneered the checklist approach in hospitals.
Still, this is a delicate operation (It’s a week in the hospital — less if I feel better and have no complications — and then 4 – 6 weeks recovery).
Indeed, if you use Google you can find the unofficial first rule for surgeons is, “Eat when you can, sleep when you can, and don’t f@ck with the pancreas!”
And, with a one-word change, that will eventually be the rule for humanity. The sooner, the better.
P.S. They say laughter is the best medicine, so if you want to post links to humor — nothing gut busting of course — please do. If this link here doesn’t make you smile, nothing will.
P.P.S. I don’t think I’ll generally be posting blog updates on my progress, but I will be tweeting on it.
P.P.P.S. My new motto: When life gives you lemons, make Modified Citrus Pectin.