I am not sure about you, but I always thought that biopsies were pretty cut and dry. You either have this or you have that, you have it or you don't. And I like to think that after 9 years in the medical profession that I would have known otherwise. I went to see my endo for my 3 month follow up and to check my levels. I was also scheduled to see the oncologist that afternoon. I knew there was a chance that the endo could have my results but I was unsure if I wanted to hear it from her because she really couldn't give me any options on how to proceed. But things have a funny way of working out.
One thing I LOVE about UMC--the interdisciplinary approach. These doctors all talk and know each other. So I shouldn't be surprised that during my endo visit my surgeon busts up in the room! But it was very refreshing to have both in the same room and hear them talk it out. He had my results and it was very frustrating to hear that the pathologist could not give a definite diagnosis. He saw atyipical lymphoid cell hyperplasia that could be cancerous, could be precancerous, could be normal reactive nodes based on my autoimmune process, or just overgrowth of cells. I think he covered everything it "could" be. My doctors were so frustrated and even though we had not spoken with the endo team at UMC, it seems that the problem lied in the pathology department. The decision was made that because of the rarity of whatever is going on, we needed to move to a bigger, more specialized facility-- MD Anderson. The surgeon also agreed that taking out any more tissue/organs was not an option, because we would only get the same results.
That afternoon, I met with the oncologist and she agreed to the no more surgery and also felt like it was very "gray." Her plan is to rescan me in May and see if there has been any more progression and if not, than this would be the routine every 3-4 months indefinitely until something did progress. She did request to send my biopsies to Mayo to get a second opinion but doubted it would show anything different.
I think I was content with this plan, especially since I knew we were still planning on going to MD Anderson. However, be careful what you ask for. I get a phone call Friday morning from the oncologist. She was only going to call me if Mayo results were different.....and they were. They actually gave me a diagnosis---Follicular Lymphoma In Situ. If you go look it up BE SURE TO INCLUDE the "in situ" part. It is very important. The diagnosis is a fairly new diagnosis recognized by the medical world, like less than 15years. UMC has only seen 3 patients with this. EVER. From my understanding, it is cancerous cells that are inactive. Will they ever become active? That is unknown. Again, the "wait and see" with periodic scans method is what is recommended.
Nothing has changed. We are still planning on getting another opinion and if they agree, than maybe we could get a better picture of what to expect. My next scan is also already scheduled-- May 6. In the meantime, life goes on. Soccer has started up, dance is in competition mode, and my baby boy turns 6 tomorrow. 3 months ago, I wasn't sure what treatments I would be taking that might interfere with these things. I am so thankful that there hasn't had to be any yet. That I get to be part of everything and that I feel a sense of normalcy returning.
We should hear from MD Anderson this week and will be sure to update when I do!
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