Archive for the 'Cancer' Category
September 26th, 2008 by Trisha Torrey
From time to time I’ll read an article written by a doctor about his or her experience as a patient. Several have written books about their experiences, and what they learned from them.
Often their own patient-hood causes some sort of epiphany. That “aha!” moment that helps them GET IT. Their work is no longer their job, or their career. It becomes a total understanding of how their patients feel, how they are fearful, confused, frustrated and anxious. It creates empathy.
This came to mind today because I found two articles that address the subject. The first was published in Healthy, edited by Amber Smith of the Syracuse Post Standard (the newspaper that carries my biweekly column) — called Doctors As Patients, it tells the stories of five doctors who had their own experiences as patients and all of whom feel much better prepared to do their work now.
The second was an article about Dr. Ron Davis, president of the AMA (American Medical Association) and his diagnosis of pancreatic cancer. I’ve blogged about his article on my About.com site.
Regardless of their experiences, most doctors will still never “purely” understand the feelings of inadequacy each patient feels when it comes to understanding his or her medical problem. No doctor can ever subtract his or her knowledge. Further, when a doctor goes into treatment, there is still a professional courtesy that goes along with it. Regardless of what form all that takes, the experience is still different.
But if I had my choice? I’d most certainly choose a doctor who’s been in that very vulnerable position of having been a patient himself or herself. That doctor will most definitely be more empathetic. It’s a perspective that will serve him or her well in practice, for sure.
September 23rd, 2008 by Trisha Torrey
When I received my cancer diagnosis in 2004, and proved I didn’t really have cancer at all, it was the first time I had ever heard or known about that form of misdiagnosis.
It’s backwards from those we hear about more frequently. Most of the time we hear about a “missed diagnosis” — meaning someone has a disease or condition and it is not diagnosed — and then does not get treated. In the case of a cancer, of course, no treatment may mean the difference between life and death.
This summer we were able to prove that two other people, Heather and Daniel, had been diagnosed with cancers they did not have, almost identical to my own misdiagnosis. In our cases, we were told we had something we didn’t. Missed — yes — but backwards from the more usual case described above.
And it seems another person has suffered this fate as well — as written about in today’s Post-Tribune (from northwest Indiana — not far from Chicago) — a gentleman named Albert Velasquez Jr. was diagnosed in 2003 with lung cancer. He did exactly what he was supposed to do — went for a second opinion — and the second lab also told him he had lung cancer….
Except that he didn’t have it.
As near as I can tell, he never received treatment for it either. About three months passed between his first tests and the ultimate discovery of his misdiagnosis…. and if you substitute his name and type of cancer for mine, we could be telling the same story, except for two distinct points:
1. That his misdiagnosis was a result of switching lab specimens. This happens WAY too frequently. Lab techs are in a big hurry and swap one person’s samples and name with another. I suppose they catch themselves when something like this happens (or if a woman is told she has prostate cancer?) — but studies tell us it happens daily. About 1% of them lead to dangerous treatment mistakes, according to a pathologist at the University of Pittsburgh. But he also pointed out that “you wouldn’t want to have 1% of airplanes crashing.”
2. Albert Velasquez has filed a lawsuit. I did not.
His suit is asking for damages to cover the extra costs needed from the misdiagnosis, and proof that the right person was eventually informed of his misdiagnosis.
So what can we patients do with this information?
I hope it will show you that when mistakes are made, it becomes incumbent upon us — the patients who pay for the mistakes — to figure out the real truth. We need to trust our intuition, pull out all the stops, and keep following the evidence to prove — or disprove — our diagnosis.
Here are some tools:
- Learn about the concept of differential diagnosis — and keep asking questions.
- Make sure you get at least one second opinion (even a third, if necessary, just like Mr. Velasquez did).
If you have been diagnosed with cancer, then yes, there is a better chance you do have it than don’t. But why on earth would you risk those horribly invasive treatments like chemotherapy or radiation if, for want of another test or opinion, you don’t have it?
September 11th, 2008 by Trisha Torrey
It’s been awhile since I’ve posted. In that time I’ve been the Gramma-sitter for my two little grandsons while their new baby sister arrived (welcome Kyla Shay!), buried my ex-husband’s cremains (he died last April), spoken to two groups of patients, recorded two radio shows and finished my book proposal.
Enough excuses, you say!
But neither of these efforts, nor the emotions associated, can come close to the roller coaster Daniel’s family has ridden in the past nine months. Even those emotions pale in comparison to the relief they felt during the past week as they learned that, just like Heather’s story earlier this summer, and my story, too, Daniel doesn’t have SPTCL either.
Learn more about their discovery and the report from the NIH.
So. A h*ll of a track record in 3-1/2 months, wouldn’t you say? Three reports of subcutaneous panniculitis like t-cell lymphoma (SPTCL). Two of them aren’t even cancer.
I wish you could hear the song in my heart, and see my smile and tears of joy! If not one single other patient ever benefits from my work, then I will always know these two people – Heather, then Daniel — have been spared chemotherapy.
Pressing on. And OH so happy!!
August 25th, 2008 by Trisha Torrey
When I was (mis)diagnosed with SPTCL (subcutaneous panniculitis-like T-cell lyphoma) in 2004, I was handed a book, published in July 2004, that stated that “fewer than 100 cases have been reported in the last decade.”
Yeah — really, really rare. Because that’s a book used by oncologists all over the world.
Then, from Fall 2004 through May 2008, I heard from only two other people dealing with SPTCL diagnoses. One was a husband of a woman diagnosed. One was the friend of a person diagnosed. I never heard back from either one, so I don’t know their outcomes.
You can imagine then, however AMAZED I am, that I have now heard from three people diagnosed with SPTCL in the past four months!
Heather — we worked together and proved she had been misdiagnosed, too. You can read her story on my SPTCL page.
Cynthia — who has struggled and been treated for her SPTCL for two years or so. Here’s her story in her own words.
And now Daniel — a 15-year-old boy whose mother, Sonia, contacted me. Daniel’s diagnosis is HIGHLY suspect, like Heather’s and mine. She’s still in the process of chasing down more details. You can read the latest on Daniel here.
The point? We are developing a community of people who can offer information — and hope — to others who have just received a devastating diagnosis, and are reaching out to others.
You can do the same! No matter what your diagnosis, you can look for other blogs that address it, or set one up yourself. Share information, Vent. Ramble. Get angry. Help someone else — the most important part. We’re all in this healthcare thing together, you know.
