[To catch up on previous chapters of Heather's story, link here (post #1) and here (post#2.)]

Heather had her first oncology appointment today.  She was lucky to get in so quickly after her primary care physician ditched her (that still makes me shudder) and she was prepared.  Last week, after my post about her diagnosis of CGD-TCL, cutaneous gamma-delta t-cell lymphoma, she had been contacted by Judy Jones at the Cutaneous Lymphoma Foundation, and she was feeling as prepared as she could.

What she was NOT prepared for was what happened!

Her oncologist was happy to tell her that the results of her clonality test had come in and it turns out that no, she does not have cancer.  No treatment needed.  They will continue to follow her for awhile, but don’t expect the diagnosis will change.

WHAT??

If you’ve read my story of SPTCL, then you know the clonality test was pivotal in my story, too.  In fact, my entire diagnosis was predicated on this clonality test, and like Heather’s — the clonality test proved I did not have cancer.

While Heather was there, the oncologist got back in touch with the lab in California that reviewed the clonality of her lymphatic cells.  They reviewed the slides, reviewed the findings, reviewed studies and all agreed that no — Heather has no cancer.  She does have some problem some lymphatic cells, but she will not be treated.  Instead, she is working on diet and nutrition.  She’ll be checked again in four months.

To say Heather and her family — and her co-diagnosed friend Trisha — are euphoric, doesn’t begin to touch it.  We’ve not even met in person, but Heather and I will share a bond forever.  She lives in Nevada, and I’m supposed to be out that way in October — so we hope to meet.

Mostly I’m thrilled, just thrilled that the system worked the way it should.  Heather’s friend Leslie found me and my experience, Heather and I consulted, and two patients worked together to arrive at the right answers for this young mom who only deserves the best.

Now read what Heather has to say about it all — and post a cheer or two to her blog.  Woo HOO!

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Here’s the good news:  Heather does not have SPTCL.

Here’s the bad news:  Heather does have another type of T-cell lymphoma called CGD-TCL, cutaneous gamma-delta t-cell lymphoma.  Also written with Greek letters:  cutaneous γ/δ T-cell lymphoma

To say that both Heather and I were shocked is an understatement.  If you read my post a few weeks ago, you know that she contacted me when she had a lump biopsied, and was told she had SPTCL (subcutaneous panniculitis-like T-cell lymphoma.)  Thing is — like in my case four years ago — she has no other symptoms.  Further, since then she has had additional tests, including a CT scan that shows no abnormalities, and blood work that is clear.  So yes — shocked.

And, as if it’s not bad enough that she’s been dealt this blow — listen to this: when a review from the NIH is requested, the protocol is for it to be submitted by her primary care doctor or her oncologist, then for the NIH to report back to the doctor who requested the review.  That doctor is then responsible for getting the results back to Heather.

Heather’s biopsy was submitted to Dr. Jaffe at the NIH in early June. When she hadn’t heard anything back by yesterday, almost a month later, she sent an email to Dr. Jaffe just asking when she could expect the results.

Turns out the review was completed June 18 — two weeks ago! — and returned to Heather’s doctor…. and yet no one — not the primary care doctor OR the oncologist has contacted Heather with the results.  Still.  Today.  Not a single phone call.  No one!

The reason Heather knows about her diagnosis is because Dr. Jaffe was considerate enough to attach it as a pdf to her reply email.

So we’ve learned a couple of lessons from Heather’s odyssey so far…. first, to be assertive about reviewing a diagnosis.  Yes — it turns out Heather was misdiagnosed, too — although in this case, she does seem to have lymphoma.  But if she had not pursued a review of her diagnosis, she would be treated for the wrong lymphoma.  Then what?

Second — when you don’t get test results back — go looking for them!  And don’t take no for an answer.  You can be polite, but you need to be assertive.  Had Heather not gotten in touch with Dr. Jaffe, she would still be waiting for the word.  And as far as her doctors are concerned — she’s still waiting!  (I’m having trouble stopping myself from calling these medical bozos what they are.  Oh.  Did I call them that?)

CGD-TCL is just as rare as SPTCL, no doubt about it.  It will be impossible to find a doctor to treat it who has experience with it.  I’ve suggested to Heather that she find a doctor who is willing to research and learn alongside her — a true partner for this unusual disease.  Easier said than done, I’m sure!  But what a blessing if she can actually find one.

If you’d like to follow Heather’s odyssey, I’ll keep you updated here… or better yet…. check out her new blog.  Then, keep Heather and her family in your prayers.

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I’ve been reminded twice in the last two days about the oncologist who was a part of my misdiagnosis story. He’s a big part of it; if he hadn’t been such an arrogant SOB, then I probably would not have changed careers to help other patients help themselves.

But most days I don’t even think about him. So two reminders in two days? That’s a double whammy.

The first came yesterday as I participated in the Susan G. Komen breast cancer Race for the Cure. There were almost 8,000 participants, among them several hundred breast cancer survivors. I had the opportunity to speak to a handful of them, and when they were particularly happy about how successful their treatment was, i would ask them who their doctors were.

One woman shared a litany of doctor’s names, among them was the same oncologist I had dealt with. She spoke in glowing terms about all the other doctors, but his name was just a part of the list. Nothing good to say — he was just a participant.

I didn’t comment. I didn’t ask her about her experience with him. I have never shared his name publicly because my goal has never to cast dispersions on him personally. I will confess, however, that if someone is seeking a new oncologist for a second opinion, or for referral purposes, and they have told me he is under consideration, then yes — I have shared my experience. Have I had an influence on which patients have chosen to see him? Yes, I’m sure I have — but not much of one.

Then this morning, I found this article from the New York Times, entitled, “Doctor’s Start to Say ‘I’m Sorry’ Long Before ‘See You in Court.’ And there it is again — that feeling…. argh. He held my life in his hands, and he was so ready to treat me with deadly chemicals for no reason….

One aspect of my dealings with him continues to confound me. He never apologized.

Once my misdiagnosis was proven by the National Institutes of Health, I contacted all the doctors who had participated in the odyssey. Of those who had made mistakes and contributed to the errors, I asked for apologies. I made it clear I was not interested in lawsuits.

All the doctors who had contributed to the mistakes apologized — except the oncologist. In fact, he sent me a long letter outlining why he had done the right things. Never mind the fact that he had never read the results of lab tests indicating one more test was being run — yet he had never looked at the results. Never mind the fact that when I told him I wanted another opinion, his answer to me was “what you have is so rare, no one will know anymore about it than I do!”

There is much in the medical literature these days about the positive outcomes when doctors own up to the mistakes they’ve made. This article from the NY Times is one example. Patients heal better, fewer lawsuits are filed, there are so very many aspects of improved health and service that come as a result of professionals taking responsibility.

It’s too bad for this particular doctor that his ego won’t allow him to do the right thing. On the other hand — had he been more forthcoming, perhaps I would not have been angry enough to make sure these kinds of problems wouldn’t happen to other patients?

We’ll never know. But I sure as heck hope that, as time goes on, he’ll realize his ego is getting in the way of his competency. A good doctor is a decent human being, too. In my opinion? Until he learns to own up to mistakes, he’s not much of doctor.

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A few months ago I told you about an addiction psychiatrist from Naples, Florida who is a bully. Well — he is still bullying. I heard from him again today.

At that time I shared with you a story about a comment that had been made about him by someone who had read my blog. Nothing I had said, rather, commentary by someone else about how she felt she had been sexually harrassed, stalked and mistreated.

I told you how, behind my back, he had pulled my Wordpress blog offline and had contacted my About.com colleagues to ask them to make me pull THIS blog offline — but he had never even contacted me! He never asked me if I would remove the comment, which — if I had known there was a problem — I would have. The comment was a he-said, she-said type of thing. I don’t know either of the parties. I would have pulled the post. All he needed to do was send me an email to request it — and as you can see — my email address is front and center on every page of this blog. I’m a reasonable person. No excuses for his bullying tactics.

In frustration, this Naples psychiatrist finally sent me an email DEMANDING I remove the comment. Aha! He did find my email address! He cited all kinds of federal laws and trademark infringements he thought I was violating. At that point, I replied to him, and told him I don’t respond well to bully tactics. He had found my email address just fine at that point — so why didn’t he contact me before contacting my colleagues?

And then, I asked him for an apology. I just wanted him to take responsibility for all his bullying. With an apology, I would removed the post and that would be the end.

The apology was never forthcoming. Nope. Instead he threatened me some more — so I published my first post which you can find here.

You can imagine then how I felt about another email arriving from the bully psychiatrist today. Here’s an excerpt — copied and pasted — the typos are his:

Subject: YOU ARE BEING SUE

PLEASE BE ADVISED IF THE FOLLOWING CONTENT IS NOT REMOVED WITHING 3 WORKING
DAYS, I WILL ADVISED MY ATTORNEY TO INCLUDE YOUR WEB COMPANY AND
AFFILIATES IN A LIBEL SUIT FOR $1,000,000 DOLLARS FOR DAMAGE AND EMOTIONAL
HARM. YOU CONTINUE HAVE METAGS THAT APPEAR AS FOLLOWS IN GOOGLES AND OTHER
SEARCH ENGINES

Hmmm…. so the question is…. what happened to all those cyberstalking laws he cited in his first contact with me? Now — who is stalking whom? All I asked for was an apology from the bully. He can’t handle an apology — so now he’s stalking me. Never mind that I live more than 1,000 miles away.

But — what he doesn’t know is that I spend quite a bit of time in South Florida — not far from Naples, Ft. Meyers, Marco Island… I have family there and I’m there several times a year. In fact, I’ll be there within the next few weeks, so while I’m there, I plan to make a trip up to the Naples police department to see what kinds of restraining orders or other paperwork there may be on him. If he contacts me again, I’ll add a restraining order to their records.

I will not be bullied.

And what does it mean to you, the reader of this blog? Patients need to be able to protect themselves from dangerous doctors, whether those doctors are addicted to alcohol or other substances, bad surgeons, guilty of making mistakes with their patients — or even bullies.

Here is a good way to do it:

Sometimes all it requires is a general google search to get the information you need. If you know the doctor’s name, then search on that first, plus the word “blog” or the word “problem” or even “malpractice.” You may need to use your location, too, because there may be more than one doctor who has the same name.

Even if you don’t know his or her name, Just input your location, the type of doctor you seek (family practice, orthopedist, whatever) — and then those words: blog, malpractice, problem, even “error” or “mistake.”

Be sure to look down through five or six pages of google results — and you have a better chance of finding the information you need. Even if there haven’t been lawsuits, you can get general impressions of a doctor if someone has had a very good or very bad experience and chose to share that information online.

Bullying is never acceptable. I’m still waiting for that apology. I refuse to respond to bullying tactics.

I hope you will follow my lead.

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