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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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The calcified lymph nodes have nothing to do with cll but most likely from an old infection of granulomatous disease .
Hi Lori,
I am seeing the hematologist on November 21. I'm a bit of a nervous wreck at the moment as the date draws nearer.
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1 ReactionGood morning @reginaf. Opening day jitters…that’s the first thought that popped into my head this morning when I read your post. It’s the same feeling of nervousness and uncertainty that an actor has before walking on stage or a new business owner has when the doors open for the first time and a patient who is waiting to see a new doctor for a potentially life changing diagnosis. Facing the unknown isn’t an easy thing for any of us. But I think you’ll be a little more relaxed when you finally have an answer and can move forward.
There’s a helpful discussion in the forum on how to get off to the best start with a new specialist. I thought that might be a good place for you to gather some thoughts. Make sure you write notes of questions you may have.
https://connect.mayoclinic.org/discussion/your-tips-on-how-to-get-off-to-the-best-start-with-a-new-specialist/?pg=1#comment-240765
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I’ve also posted a few questions you might want to ask your new doctor. They may not all be appropriate for the first appointment but it gives you some idea of what to ask.
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What do you think is causing the symptoms I'm experiencing?
What tests will be involved in determining the cause?
Is there any pain, discomfort or side effects involved with these tests?
What is the likely solution or treatment for the problem?
What side effects does the treatment have?
What are the chances that my treatment will be successful?
What will the treatment cost? Will it be covered by my insurance?
Can my condition be cured, or is it something that I will have to learn to live with?
What lifestyle or diet changes should I make in order to improve my quality of life?
If I have other medical conditions, how can I manage those, as well?
What kind of follow-up appointments can I expect?
Do you have any good sources of additional information on my medical condition?
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I know that you’ve had losses in your family from cancer and that can’t help but enter your thoughts…been there myself. The most important thing is to not dwell on what if this happens to me. That causes so much unnecessary stress, worrying about things over which you have no control. IF something is amiss, THEN you will face it head on and take care of business. It’s a much less stressful way to live. So take a deep breath, hold for 4 seconds then slowly exhale.
Do you have someone who will go along to the appointment with you?
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1 ReactionHello @reginaf,
How was your application with the hematologist?
Good morning. As I read your story it does remind me of my journey. As you say, we’re not doctors, and hopefully you’ve been given a diagnosis by this point. My cancer is Splenic Marginal Zone Lymphoma - (a B Cell lymphoma) with a slightly enlarged spleen and high WBC numbers. It was not fully diagnosed until after a lumbar puncture. Not fun but the team was fabulous and I finally had a diagnosis. Like you, I have no other symptoms and am on a wait and watch protocol. My doctor orders an ultrasound yearly and bloodwork every four months. To be honest - it could be much worse.
I’m thinking of you and hoping you get that diagnosis through which you can begin adjusting. This is a good place to reach out for support
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5 ReactionsHave you had the December appointment?
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1 Reaction.I did have my December appointment, however all of the blood test results were still not in so they are trying to "speed up" the results. Since then, my WBC and Lymphocyte counts have increased again (they have never remained constant, they just go up and up. I also have some swollen lymph glands now as well, so they were talking about possible treatment, but they did not want to discuss until I have all of my results. Next appointment is January 31st. So, I am still in the dark and certainly hope on January 31st they will have answers and possibly a treatment plan.
Thanks for asking.