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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.
Thanks, everyone.
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Yes
I have no appetite
But l am waiting on blood results also that are checking DNA and to confirm CLL l am still learning what it is
I didn’t have an experience like yours. Treatment plans and future expectations highly depend on diagnosis. I feel like the time of “not knowing” before my diagnosis was one of the hardest parts of my journey. Once you know your diagnosis, that will put you on a predictable path. My oncologist’s energy is calm and supportive. I hope you can find someone like that for you. Some advice I got when I was early in my journey was let yourself imagine the worst for five minutes. See if you even need that long with it. Then stop and move on with your day. It helped me give those thoughts their place in my schedule. They don’t seem to pop up as much on their own if you give them that time.
I’m glad you are here. I hope you can find the support and help I’ve experienced on these forums.
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3 ReactionsIt might be a good thing you didn’t experience any night sweats, weight loss or other symptoms. I did and that put me in the “B” category for my diagnosis, which gave me a slightly worse prognosis.
Forgive me if I am misunderstanding - your story presented this way and you are still waiting on a diagnosis?
I am also dealing with the VA and they did a test to do with DNA
I know that cancer is not a death sentence anymore, but dang. Especially after I got the biopsy and it was negative, I really thought it was all over. I know what my doctor is doing is the right thing, and he told me to my face that he truly does not believe I Have lymphoma or leukemia, but he wanted to be absolutely sure. And I appreciate that, I appreciate not being BSed too. But it is still terrifying. I am only 31, I have so much more to do.
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1 ReactionAre you referring to flow cytometry and chromosome tests? If do, be prepared for a wait as the tests do take a lot of time to process.
Try not to freak out, and just take it one step at a time. It seems like you may expect certainty, but in the applied science that is medicine, as in all of science, uncertainty and ambiguity, to some degree, are the norm.
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3 ReactionsVery unusual at the age of 31, but happy to hear that your WBC is only marginally over the normal range. I am 66 and was diagnosed with cll just under two years ago. I went to the doctor because of exhaustion and and being unstable sometimes while out for a walk. Has anyone else experienced this dizziness or being unstable? l also pick up colds very easily, which in the past was not the norm. I have been active all of my life and have played almost every sport in the past, now it's pickleball. My first out of whack number was 18 (normal range 4-11 X E9/L), but now after almost two years it is at 86 and I am still on the watch and wait program because I do not have the other symptoms you mentioned. More concerning for me are my lymphocite counts which have gone from 14.5 (normal range 1-3.5 X E9/L) to 70. I am reading that when lymphocite numbers more than double in six months it is a more aggressive cll and prognosis is not as good. I have not had any tests done and last time I asked for more probing, so they are doing a blood test to do with the DNA. I also go for blood work every two months.
Originally I was told that my WBC would level out most likely and just stay there probably for years and this has never happened. Numbers just keep elevating and they have never leveled out so that is very bothersome. Exhaustion is my main complaint which leads to me doing less so I really have to talk myself into doing things. So I do things such as pickleball and dance because I know I have to but cannot maintain the level that I use to.
My husband died when I was 50 so I would like to hang around until my 80's for the kids (grown up. ha). Geez my mother is still alive at 92! I am from Canda so my numbers may be a different reading.
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1 ReactionHello @reginaf. It’s really unsettling when you feel you’re in limbo with a diagnosis. Have you been to see a hematologist yet? Is that scheduled soon?
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