Discussions By Condition: Lymphoma

Cutaneous T-cell Lymphoma or some other kind?

Posted In: Lymphoma 2 Replies
  • Posted By: mattluke73
  • May 19, 2008
  • 04:03 AM

hello, I replied on another post but thought to myself that I was being rude by doing that because I didn't really try to answer the questions the other person asked and I am sorry for that. However, I do need some advice. Please read my post.

I had a knot come up on the back of my head on the left side at the base of my skull a couple weeks ago. Went to dr. next day, he removed it two days later (thought it was a sebacious cyst). A day after that called me and asked me to go to the oncologist as the pathology report was suspicious. Went to the oncologist that afternoon and oncologist told me that what the other dr removed was Cutaneous T-Cell Lymphoma (as per the pathologist). Well, the oncologist scheduled me for a PET scan the next week and said that the PET scan would pick up the smallest spec of any cancer in my body and that if anything showed up, it would be considered cancer as they would inject a radioactive glucose in and IV and have it go through my body prior to the scan. If any cancer, the cancer would "suck up" the radioactive glucose and be hi-lighted under the scan indicating a malignancy. Went for the follow up with the oncologist and he said the PET scan showed two lymph nodes enlarged and malignancies in them. He told me I had three options since the rest of my body was perfectly clean, 1. radiation, 2. chemo, 3. a combination of the two. Then he told me he wanted to look at one more picture and he would be able to better explain it to me. He said wait a few minutes and come back in to his office. So we did. Thirty minutes later he says that he doesn't think I have cancer but wants to send me for a CT scan and a biopsy of the lymph nodes in my neck. I am floored. I am no closer to knowing if I do or don't than I was two weeks ago. What the heck? I thought the PET scan would show CANCER? IF anything showed up on it, it would with 99% accuracy be cancer? First he said I do have cancer and need chemo and/or radiation and 30 minutes later he says he doesn't think I do but I need another scan and biopsy anyway. What do you guys think?? Any medical professionals on here? Oh, I almost forgot, I was diagnosed with Epstein Barr Virus by my MD a couple months ago and he told me then that there was an increased risk of certain cancers (Hodgkins disease, lymphomas, etc...) with this disease. I am tired alot. I am ok if I am doing something but when I sit still, I fall asleep. Headaches - lots of them before the lump was removed. Soreness on the lymph nodes that are swollen. Oh, and I've been on antibiotics for three weeks because the Dr wanted me on anitibiotics prior to the lump being removed and for two weeks or so afterwards so doesn't that sort of rule out an infection causing the swolen lymph nodes? Lymph nodes are on the same side as the tumor was removed.

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2 Replies:

  • Any news on this? What did your headaches feel like? I've had headaches in the same place but on the right. They feel like someone stuck a knife in my head and left it there. I can't get anyone to believe me that it is more than a muscle spasm from my neck- which it's not b/c my neck feels fine since doing PT. Anyway, I'd appreciate any info you can give me.Thanks.
    dizzy lizzie 192 Replies Flag this Response
  • Well I think it's best that you consult a doctor or two. A 2nd opinion is always worth it sometimes.
    Comfortwear 4 Replies
    • August 25, 2008
    • 07:26 AM
    • 0
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