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 ?/? 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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So sad to read about these types of things happening. I have always told my patient that they need to have a note in ALL of their charts–their family doctor, any specialist, and any clinic or hospital–stating they are ALWAYS to be sent a copy of ANY test report. Some will tell you they can’t do this without asking your doctor. If so, tell them you’d like to speak with their supervisor. Then,if you receive nothing within TWO weeks of any test, be that squeaky wheel and CALL the office/clinic/hospital where the test was done.
Healthcare workers are no less human than the people who bag your groceries. And, in our defense, many clinics, hospitals, etc are extremely understaffed, at least as far as the nursing staff goes. And, mistakes are bound to happen when working with such high numbers of patients and tests. That is not meant as an excuse. Just a bit of reality. Most healthcare workers are very diligent and doing the best they can. But, our mistakes can have dreadful effects on patients, as too many patients can attest.
So, be your own best advocate, or take someone with you. May even consider (I highly recommend this)taking a tape recorder to your doctor appts.
And, of course, always have a prepared list of questions you need to ask so you don’t forget anything. With the recorder, you don’t have to be so concerned of writing everything down. You can “stay in the moment”, knowing that if you get off track, you’ll be able to listen to the tape at home and take more notes there.
Also, with a tape, your whole family can stay fully in the loop with all the same info.
I highly suggest taking someone with medical background, preferably someone NOT related to you, for any BIG appts or any that will have emotional impact on the listeners. An objective RN, for example, will be able to remain unaffected by any emotional connection to you. And will be able to ask other, pertinent, more clinical questions if necessary, depending on the circumstances.