Lymphomatoid Papulosis

Try saying that ten times fast. Try being a patient of it. For those of you who don't know, I suffer from a condition called Lymphomatoid Papulosis (LyP). Here is a brief background of what it is:

Background: Lymphomatoid papulosis (LyP) is a chronic papulonecrotic or papulonodular skin disease with histologic features suggestive of a malignant lymphoma. The disease is characterized by recurrent crops of pruritic papules at different stages of development that predominantly arise on the trunk and limbs. The papules heal spontaneously over 1-2 months, usually leaving slightly depressed oval scars.

The term lymphomatoid papulosis originally was used by Macaulay in 1968 to describe "a self-healing rhythmical paradoxical eruption, histologically malignant but clinically benign.” Due to the typical waxing and waning clinical course, LyP was previously considered a pseuodolymphomatous inflammatory process. However, the classification system for cutaneous lymphomas has evolved rapidly, and, during consensus meetings in 2003-2004, the World Health Organization—European Organization for Research and Treatment of Cancer (WHO-EORTC) classification grouped LyP among the indolent cutaneous T-cell lymphomas. The rationale for classifying LyP as a cutaneous lymphoma is its association with other malignant lymphoproliferative disorders; however, some experts hesitate to classify this chronic skin disease as a true malignancy because of its spontaneous resolution and benign clinical course.

LyP is part of a spectrum of CD30 (Ki-1)–positive cutaneous lymphoproliferative diseases (CD30⁺ LPDs), including LyP, primary cutaneous anaplastic large cell lymphoma (pcALCL), and borderline CD30⁺ lesions.

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In other words, I have bumps and blisters every little while. Some come and go, some stay for months.

I have had Lymphomatoid Papulosis since I was 11 years old. And with only about 250 cases in the United States, you could say I am "one in a million." Though not a lucky one in a million. LyP is really Lymphoma's ugly cousin. Though it doesn't require most anything but some photo therapy, creams, or no attention at all, it is still a very painful condition. Right now I am int he middle of one of my worst outbreaks ever. I have a very large blister on the left side of my foot. It oozes and bleeds all the time. I finally went to see the local doc yesterday, and I was yet again referred to OHSU in Portland. I am still waiting on a phone call from them and trying to decide if I need to go back down there. Though it might help others down the road with this condition, my going to OHSU usually leads to a mis diagnosis of sorts (very common with this condition). The mis diagnosis usually reveals I have lymphoma, which is not the case at all. In fact, the lead oncologist at OHSU did just that three years ago. A needle biopsy vindicated me of any belief that I had cancer and/or it had returned from my original diagnosis nearly 10 years ago.

So by the first of next week I'll decide if I want to become a medical guinea pig again, or just tough it out and hope that it 'goes away.'

-LB