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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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Welcome to Connect @marytheresacll. Thank you for sharing your experience with CLL so far. Being in the watch and wait period (or active surveillance) can be a little stressful when you keep wondering ‘what’s going to happen and when’….
CLL is generally slow to develop. There are treatments which can slow the progression of the disease. Statistics show the survival rate for CLL is better than for many other types of cancer.
Here’s a link to an informative article about CLL.
https://www.verywellhealth.com/cll-prognosis-5211991
It’s important that you’re having the blood tests every 2 months to keep tabs on the changes, especially with the increase in your WBC. Have you had a bone marrow biopsy and exam?
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2 ReactionsHello Lori, thank you for the welcome. I had an appointment this week and I asked about getting a bone marrow biopsy and the response was that you can get most of the same information from a blood test, so that is what has been done. It does make me uneasy that I have had very little testing.
Hi @marytheresacll, There’s quite a bit more information provided by a bone marrow biopsy and aspiration. While it’s true that your blood carries a lot of information about your health, the marrow is the heart of the blood manufacturing site in your body. It can show your doctor your marrow’s ability to produce healthy, useable blood products and the overall health of your marrow. It could also be helpful in staging your CLL for risk factors.
From what your doctor is telling you, you’re still in the active surveillance window of your CLL, so watching the blood numbers will tell your doctor what they need to know at this point.
Have you heard back about these most recent tests?
My blood tests showed that I have a deletion in chromosome 13 and allowed for staging of my cll. This deletion is associated with a good prognosis.
No, I have not yet heard. They will send me an appointment in the mail for December and that is when they will disclose the information. Thank you for your quick responses.
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2 ReactionsHi @navygirl, how are you doing? Have you learned more about a possible CLL diagnosis yet? Has it been confirmed?
If you have MyChart or something similar, the results may be posted in about a week from the blood draw. The flow cytometry confirmed I had CLL and not lymphoma and this was followed up with FISH and chromosome analysis. Those took almost a month,
No results yet
Thank you for asking
I will keep you informed as soon as l can
🙏
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1 ReactionI get blood drawn, set up with my general doctor and those results I can see because it's a pretty routine test. I will have to ask the specialist in December if there is a way that I can see my results from the bloodwork that they are doing. Thank you for your response. I need to investigate into FISH and chromosome analysis.
Almost all of my test results appear automatically and I often read them before my doctors have. The only time they don't appear that way is if I am having a test performed out of network. Then I have to wait for his or her office staff to scan in the results. But then I may still have seen the results before the doctor. I have learned that my PCP may or may not read reports so the burden falls on me. Specialists are much, much better about that. My PCP had refered me to a hematologist only to ask me what she found 4 months after she reported to him that I have cll. I also had to tell him that the EMG specialist was not able to find my tibial pulse (in his report). My relating this prompted arterial ultrasounds.