After waiting fifteen days for a final report on my biopsy, I received a phone call. The doctor called me just before I was going to call and ask about the biopsy results. I had gotten so nervous waiting to hear. And, the phone call went about like I thought it would.
The doctor said that the results weren’t diagnostic. That’s when I started asking him questions. I asked him if they had read the results from 2 years ago, and he said yes. I asked him if having Mycosis Fungiodes meant that I had Cutaneous T-Cell Lymphoma, but it wasn’t covering enough of my body to call it a cancer diagnosis. He said, “Yes, we assume it is.”
I asked him if they just wait for it to cover enough of my body to diagnosis it as cancer and he said yes. He said it can sometimes take many years before a diagnosis is made. I’ve heard this before. This is the way that autoimmune disease diagnosis worked for me. It took years before the bloodwork showed I had Sjogren’s.
With CTCL, there are different stages (as other cancers also have). If I’m in Stage 1A, there are treatments like steroid creams and phototherapy. I have Mycosis Fungoides patches and some plaques. After that can come tumors, etc.
The doctor talked about these two therapies and I asked if I could start them now. He said yes. So, I will have to travel for three appointments each week. He said that they would start with a low dose of light, to make sure that I’m not too sensitive (because I’m taking Plaquenil).
I hope that my insurance will cover it. The doctor wants me to have more bloodwork done when I come and I’m also waiting on the results of the LDH test. The LDH test can show how the Lymphoma is progressing. So, the doctor knew what she was looking at when she did the examination.
I feel very sad about this, but I did expect it. I expected it two years ago, when the T-cell Lympoma was first seen in the early biopsy results. Of course, the doctor didn’t want to diagnose it then. So, at least two years have passed since my body had the early stages of CTCL.
I don’t know what the future holds, but I will now try to be proactive. I hope and pray that I can be blessed to live a long life.
@2020, copyright Lisa Ehrman