Possible upcoming lymphoma or leukemia diagnosis. What to expect?
Hi folks. I have not yet been diagnosed but I am sure I am going to be soon, and I wanted to share my journey so far.
Last year, I went to see my gyno for heavy vaginal bleeding. She sent me off for scans on my uterus and ovaries to find the source of it, and there we discovered I had a very large ovarian cyst. She referred me to a gyno oncologist who was the head of the department at Strong Memorial in Rochester, NY. So, off I went, and the oncologist sent me off for more scans so he could get a closer look at the mass. After those scans came back (PET and CT), we learned that one of the lymph nodes along my paracaval vein had lit up and my spleen was enlarged to 15 cm, and I had significant hypermetabolic activity in both, as well as some hypermetabolic activity seen in my bone marrow.
The doctor believed that the lymph node and the spleen were the result of having the large cyst pressing against them, so he put me on the “watch and wait” and I had surgery to remove one ovary and the cyst. We waited six months, and then he sent me for another CT and PET scan. Both scans came back showing that the lymph node and my spleen were still enlarged, and still had significant metabolic activity, but neither had changed in the last year. The node and my spleen were still exactly the same size. So he sent me for a biopsy on the lymph node, which to my delight, came back negative.
I believed it was all over from there, and went in for my follow up, and my doctor informed me he was referring me to a lymphoma/leukemia specialist, which knocked the wind right out of me. I asked why because the biopsy was negative, and he said that the biopsy could have been a “false negative” and he just wanted to be sure that everything was all right since this was out of his area of expertise – which is of course, absolutely the right decision.
But that’s not the end. I had a full blood panel done and my CBC came back showing that my white blood count was increased to 11.9 – citing the normal WBC being between 5 and 11 thousand. So I know that’s not a huge jump, and I have also been very ill for the last year with sinusitis and long covid, and I know those can make your numbers jump a little bit as well.
So, after that novel, haha, my questions are, what should I expect when I see the leukemia/lymphoma specialist? I know everyone here is not a doctor, but did anyone else recieve a diagnosis that had similar findings like this? I have also had absolutely no symptoms, no night sweats, no fevers, no weight loss (I’ve actually gained weight from stress eating), no pain except some pelvic pain from the brand new ovarian cyst I am growing atm.
And if this does turn into a diagnosis, what should I expect for the future? I am trying to cover my bases and prepare myself for as best as I can. I lost my father to liver cancer in 2016, my mother beat breast cancer in 2017 – I am really hoping it’s not my turn.