SPTCL, subcutaneous panniculitis-like T-cell lymphoma, was the rare and deadly lymphoma that kick-started my work as Every Patient’s Advocate.  I was told I had it.  In fact, I was told by two labs and an oncologist that I had it, and had only a few months to live.

But I didn’t.  And I’ve written extensively about the fact that I didn’t have SPTCL and what I did to figure that out.

Earlier this year, in May and then July, I was contacted by two others who were dealing with the same diagnosis of SPTCL.  Heather contacted me, then Daniel’s mother contacted me (Daniel is a teenager).  They had found my work on the web and asked if I could help them get the information they needed.

So I did.  And we learned that both Heather and Daniel had been misdiagnosed, just like I had.

Fast forward to today — the end of the year, and holiday time. I checked in with both Heather and Daniel to make sure they are still doing well.  And yes, they most certainly are!!

I still choke up.  It’s still a bit overwhelming.  That’s three human beings, all of whom shared a misdiagnosis, none of whom underwent chemo, all of whom are healthy today.

Which is precisely why I do this work.

Here’s to even more great discoveries and saved lives in 2009.

	Want more tools and commentary for sharp patients? Sign up for Every Patient’s Advocate email tips
	- – - – - – - – - – -
	Join Trisha in the Patient Empowerment Forum at About.com
	- – - – - – - – - – -
	Or link here to empower yourself at EveryPatientsAdvocate.com

De-cancered — a good word, isn’t it?  Look at these two faces — they look quite healthy, don’t you think?

Well — they most certainly are — quite healthy, despite the chemo both faced prior to proving neither one had the cancer she was diagnosed with.

What this photo doesn’t show, is the emotion behind it.  In fact, I have trouble looking at our smiling faces without choking up. That’s Heather on the right — the young woman who contacted me last June to tell me she had been diagnosed with the same rare lymphoma I had been misdiagnosed with.  We proved the professionals were wrong — Heather had no cancer at all.

And that’s me on the left — I was just so happy to meet my very healthy friend Heather and see for myself, in person, that she’s doing so well!

We met for the first time last week in Las Vegas, not far from where Heather lives, and actually quite far from my home in NY.  I was there to attend an About.com conference – but we made time to see each other.  And it was the very best “event” that took place during the entire visit to Nevada.

My hope for you is that you, too, will take the time to learn everything you can about a diagnosis you’ve been handed — it may be correct, or it may not.  I promise you that if either Heather OR I (or Daniel, who was also misdiagnosed this summer) had believed the professionals, despite our intuition and proof to the contrary, we would not have been able to meet each other, we would not be healthy today — and we would not be here trying to inspire you to better and more successful medical outcomes.

	Want more tools and commentary for sharp patients? Sign up for Every Patient’s Advocate email tips
	- – - – - – - – - – -
	Join Trisha in the Patient Empowerment Forum at About.com
	- – - – - – - – - – -
	Or link here to empower yourself at EveryPatientsAdvocate.com

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!!

	Want more tools and commentary for sharp patients? Sign up for Every Patient’s Advocate email tips
	- – - – - – - – - – -
	Join Trisha in the Patient Empowerment Forum at About.com
	- – - – - – - – - – -
	Or link here to empower yourself at EveryPatientsAdvocate.com

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.

	Want more tools and commentary for sharp patients? Sign up for Every Patient’s Advocate email tips
	- – - – - – - – - – -
	Join Trisha in the Patient Empowerment Forum at About.com
	- – - – - – - – - – -
	Or link here to empower yourself at EveryPatientsAdvocate.com

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!

(And Heather — thanks so much for your kind words. I still choke up everytime I think about what we accomplished. We made quite a team, didn’t we?)

	Want more tools and commentary for sharp patients? Sign up for Every Patient’s Advocate email tips
	- – - – - – - – - – -
	Join Trisha in the Patient Empowerment Forum at About.com
	- – - – - – - – - – -
	Or link here to empower yourself at EveryPatientsAdvocate.com

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 ?/? 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.

	Want more tools and commentary for sharp patients? Sign up for Every Patient’s Advocate email tips
	- – - – - – - – - – -
	Join Trisha in the Patient Empowerment Forum at About.com
	- – - – - – - – - – -
	Or link here to empower yourself at EveryPatientsAdvocate.com

Fast forward four years.  Last week I was invited to visit Dr. H’s lab, the lab where my specimen was mis-read, the one where my misdiagnosis really took root.  It’s a hematopathology lab, meaning specimens like lymphomas, tumors, abnormal growths.  What Dr. H wanted me to know was that procedures and policies have been changed.  In his words, had I not brought the inherent problem-causing procedures to their attention, had I not held their toes to the fire, they’d still be doing things the old way.

And people might still be getting misdiagnosed.

For this woman who has fought on behalf of patients for four years…. that was a melt-down point.  All good.  Dr. H. showed me how the processes have changed.  It’s a way of handling paperwork and the eventual reports that are issued.  It turns out my misdiagnosis was more about piecemeal reporting, and less about bad science.

The tour lasted about an hour.  I saw all kinds of specimens under microscopes, printed reports, color-laced spots on a computer monitor (all well protected so I saw no names — good privacy) — and when we were finished, and I did understand how the original mistake had happened, and what was being done for today’s patients to prevent it from happening again….  I asked only one thing.  This, from my follow up email to Dr. H – and I’m quoting:

I recognize that there will always be a certain number of mistakes that will happen in the reading / conclusions drawn from samples / specimens.  I’ll never forget your words to me those four years ago – that you were taught in medical school that there will be mistakes, but if you have to err on one side or the other, you would want to err on the side of getting someone treatment they didn’t need, as opposed to missing a diagnosis that would require treatment.  I understood it even then.  It makes sense.  And I agree that it’s probably best for the majority of patients.

But when I look at those 10,000+ numbers of specimens being reviewed each year, I have to think there is some of the human aspect being lost.  As you will remember, I did ask the one woman in the lab where we reviewed the lined up chromosome reports, about aligning the work you do with the people who are represented by all those samples.  I do understand the responses you both gave me about objectivity, but I still feel it’s important to make this emphasis:  I don’t think it takes away from objectivity to remind yourselves on occasion (as an entire group of lab professionals) that each report is followed by emotion of real human beings who are receiving answers about their lives.  Each one of those samples represent life, death, debilitation, illness – short term or long term.  If the three most important things in life are love, health and the finances needed to support them, then your results have an impact – positive or negative — on all three.  The reaction upon hearing whatever the news is – good, bad or still unknown — is always emotional in nature.  Total joy, crippling sadness and upset, worry, fear, whatever it is – it’s human.

I’m not suggesting you need to know individual names, faces and personalities to align with samples and test results.  I’m just suggesting that they be regarded for what they are – the determination of what the rest of someone’s life is going to be.  Making that connection would, hopefully, compel the people who are figuring out the answers, the people who work in your labs, want to get it right even more often than they do.  How well do they understand that they hold someone’s life in their hands when they arrive at their answers? Could such an emphasis improve the quality and success rates of your results? I realize not every specimen is a life or death situation.  I imagine some are as simple as strep throat or some other fairly ordinary malady.  Even still, to the person who may not be able to afford the medicine needed to get rid of that strep throat, even that could be a big deal.

There was more, of course…. but that’s the gist.

Bottom line — I am highly appreciative of this opportunity to visit Dr. H’s lab, to observe how their work is done, and most of all to be so gratified that the procedures have been changed and fewer people will be misdiagnosed.

It was a pivotal moment in my career and my life.

	Want more tools and commentary for sharp patients? Sign up for Every Patient’s Advocate email tips
	- – - – - – - – - – -
	Join Trisha in the Patient Empowerment Forum at About.com
	- – - – - – - – - – -
	Or link here to empower yourself at EveryPatientsAdvocate.com

I received a note from a young woman named Heather, as follows:

I would like to talk with you. I was diagnosed with SPTCL yesterday. I read your story and I feel exactly the same. Like your story, I am not showing signs of being sick. My white blood-cell count is normal at this point. I have no lesions on my body. I feel extremely healthy. I can not believe that I have to do Chemotherapy. I am not presenting any of the “normal” symptoms that this disease comes with. It just doesn’t feel right. I would like to talk to you about your experience as I am getting ready to go through the same thing.

I almost fell off my chair. I still get chills when I read Heather’s note!

I immediately sent her my phone number — and last night we talked for about a half hour. By the end of the conversation I was shaken to the core. As I explained to my husband, I felt like I was talking to myself — the same conversation I might have had with someone else who had walked in my shoes in 2004. It was scary, and euphoric all at the same time.

Why? Because both Heather and I think there is a good chance she, too, has been misdiagnosed with subcutaneous panniculitis-like T-cell lymphoma.

She did have a biopsy, like I did. She was told by her primary care doctor that “a team of pathologists” had reviewed the biopsy, and SPTCL was their conclusion. But she has no other symptoms (nor did I) and all the “classic” lymphoma symptoms are missing: chills, night sweats, hot flashes. Her blood tests are clear, as were mine. She does have other lumps, as I did.

I’ll keep you posted on what we learn about Heather’s situation. I’ve provided a few suggestions for cutting to the chase, getting her to Dr. Jaffe at the NIH, and hopefully proving that she, too, has been misdiagnosed.

But here’s how I feel today: euphoric!  Because if I never help another patient for the rest of my life, helping Heather through this difficult time will have been worth my efforts.

Wish us luck!
……………………………..
Find a follow up to this post here.
……………………………..

Updates and SPTCL resources will be found on the new SPTCL page — link here.

	Want more tools and commentary for sharp patients? Sign up for Every Patient’s Advocate email tips
	- – - – - – - – - – -
	Join Trisha in the Patient Empowerment Forum at About.com
	- – - – - – - – - – -
	Or link here to empower yourself at EveryPatientsAdvocate.com

Then I pick myself up, with a renewed sense of making sure NO ONE else will ever have to go through that.

It’s PTSD — Post Traumatic Stress Disorder — which comes over me once or twice a year, and is a result of my misdiagnosis of three years ago. A trigger, in the form of a sad movie (The Family Stone) or someone else’s misdiagnosis story, or, this week’s trigger, which I’ll describe in a minute…. and I just melt down.

This week’s trigger: I received an email from a gentleman whose wife has been diagnosed with the same, very rare, very aggressive lymphoma I was diagnosed with. It’s called SPTCL, Subcutaneous Panniculitis-Like T-Cell Lymphoma. Sometimes it’s abbreviated to STCL. It’s extremely rare: in 2004, it was reported that only 100 cases had been reported worldwide in the past decade. And because it’s so rare, it’s almost impossible to find anyone who knows much about it.

I can only assume these melt downs are a result of the intense stress over the course of the three months it took to figure out I had been misdiagnosed. The stress was a result of not only the medical aspects — the tests, the doctor appointments — and the fear of dying from it — remember, I was told I would be dead in six months unless I began chemo immediately — but also the fact that I was making sure almost no one knew about it, too.

And let’s not forget that I was battling the oncologist, who tried to stymie my attempts at double checking (“what you have is so rare, no one will know anymore about it than I do!”) and got quite upset with me when I told him I needed to know more before I would commit myself to chemo treatments.

Relief didn’t sweep over me immediately when I confirmed I’d been misdiagnosed. In fact, even though I knew I wasn’t going to die, and even though I knew I didn’t have to suffer through chemo, at that point the stress was so intense, and the anger was so unyielding, that it took many months to get beyond it. Evidently this week’s reaction means I’m still not there.

But to you, the patient who needs to be empowered, or the advocate who is trying to figure out how to navigate our dysfunctional American healthcare system, there is such an advantage to these meltdowns! And for that reason, I think it’s OK if I never DO get beyond them.

With each episode, I strengthen my resolve to help. And I can’t tell you how satisfying it was to be able to offer some solid advice to the gentleman who contacted me about his wife’s diagnosis of SPTCL.

I told him to get at least a second opinion and maybe more. I told him to contact Dr. Elaine Jaffe at the National Institutes of Health, the hematopathologist who eventually confirmed I did NOT have SPTCL.

I told him how to get in touch with the doctor who helped me, and explained that even if I DID have SPTCL, chemo would not be indicated (radiation would be the answer.)

And I told him I would keep them both in my prayers. With any luck, she, too, was misdiagnosed. Seems like an odd wish, I’m sure. But it’s possible she had the benign, non-life-threatening condition I was diagnosed with instead. (Although I actually think my re-diagnosis was incorrect as well — another story for another day.)

Bottom line? I wonder how many of these diagnosticians have ANY sense of what their mistakes can cause. I wonder if they have ANY idea of the long term ramifications.

In my case? Turns out that in spite of the meltdowns, it was the best thing that ever could have happened to me. That misdiagnosis has given me a sense of purpose because I’ve turned it into something to help others. It caused me to re-evaluate my priorities. It caused me to make choices differently. It has helped me trust my intuition even stronger than before. And my devotion to spirituality is more intense than ever.

Revenge, in the form of pro-activity and good patienting evangelism, is sweet. And if the cost is just a meltdown or two along the way, I’m happy, these three years later, to pay it.

	………………
	Want more tools for sharp patients? Sign up for Every Patient’s Advocate once-a-week or so email tips Or link here to empower yourself at EveryPatientsAdvocate.com
	………………