Diagnosis of low grade lymphoma leukemia

Initially I came to this site talking about persistent swollen lymph nodes after Covid booster. Doctors just said it was common after the booster. After two ultra sounds I was sent for a biopsy and recruits are terrifying. Is anyone willing to share any information you may have on this illness. I remain prayerful but troubled because diagnosis was unexpected.

Hi @faith3 It’s really frighting to get an unexpected diagnosis, especially for a blood cancer. I know the feeling well. My diagnosis was an aggressive form of leukemia, AML. Now it’s almost 4 years later and I’m in a durable remission. My goal is to help you understand that you don’t have to fear the worst, which of course is where our minds take us first! 🙂

A low grade lymphoma is often very slow to develop. I’m sure you’ve been researching and see the works “incurable”. That’s true but it doesn’t mean it’s not treatable to keep the disease controlled or in remission. In some low grade lymphomas there is watchful waiting or active surveillance where nothing needs to be done for quite some time.

When you see your oncologist/hematologist they will most likely request a few more blood tests and possibly a bone marrow biopsy. The bone marrow is the manufacturing site of our blood and a complete exam will give your hematologist an overall picture of your blood and marrow health.

You may have already seen this informational post on the Mayo site. As you read through the pages, note at the bottom of the diagnostic’s page, it gives you some helpful questions to ask your hematologist. https://www.mayoclinic.org/diseases-conditions/lymphoma/symptoms-causes/syc-20352638

Because there can be several variants of this blood condition, getting a firm diagnosis will be important for treatment. So for now, it would help relieve your anxiety by not checking in with Dr Google to search for all the possibilities! There are horror stories online that do nothing but instill fear of the unknown and you don’t have to live in fear. There is hope for a long and happy future.

There are discussions in the forum for some of the low grade lymphoma groups but until you have a diagnosis it’s difficult to know which might be most helpful to you. But no matter what, all of us in the blood cancer group are here to help you along this journey.
Here is one discussion that might be helpful for you.

-Lymphoma or not? https://connect.mayoclinic.org/discussion/lymphoma-or-not/

Do you have a hematology appointment yet?

Thank you for taking time to share your experience and knowledge. Indeed it’s frightening as I expected the lymph nodes would be reactive since they popped up after Covid vaccine. Oncologist has been sent test results and I’m waiting for them to get me an appointment. A friend of mine also suggested local MD Anderson for second opinion. I’ve read so much that my fears are growing.

@faith3 As your name implies…have faith. You’re going to get through this challenge. It’s caught you completely by surprise and I know it’s disruptive. Clips you right off at the knees and your whole world is spiraling. But it doesn’t signal the end of your life. It signals a change, where you’ll learn to flex and roll with this new development. No what ifs…

I firmly believe knowledge is power so learning all you can about a disease is helpful as you go forward. But right now you’re looking for answers before you even know the questions to ask. Reading about all these things that ‘could’ be happening will lead you down a dangerous rabbit hole and fill you with dread. Most of what you read won’t even be relevant to you. ☺️
Your friend has a great idea of a second opinion from MD Anderson. Besides Mayo Clinic, they are one of the leaders in cancer diagnoses and treatments. That would give you the peace of mind you’re looking for. In the meantime, please avoid looking for trouble on the internet. 🙃

You’re not alone in your journey, so let me know what you find out from your oncologist, ok?

Again thank you for the encouragement. I have worried ever since I noticed the nodes which developed after Covid booster. Guess the booster found an underlying issue. It’s true that low grade lymphoma could just be a general term that pathology used for my biopsy. I have a 9 Jan appointment with Texas Oncology and waiting to hear from MDAnderson. The holiday is not a good time to be a new patient, apparently. This situation is truly testing my faith and I’m all black and blue from the biopsy. I probably funny mention that I’m 77 years of age and it seems some forms of leukemia love us oldies. I so appreciate your encouragement.

Hello, my dad is newly diagnosed with cll with low grade too
He has no symptoms or signs but his doctor said " this case is wide spread after coronavirus and/or vaccines
I wish you and him a speedy recovery

Welcome @nadakhaled, that must be hard to learn that your father has been diagnosed with chronic lymphocytic leukemia (CLL). Many people live a long time with CLL. Often treatment for CLL, especially for early stage when there are no symptoms, is active surveillance or watchful waiting. Will your father receive watchful waiting or other treatment?

You may also wish to connect with other members who have experience with CLL in this related discussion:
- CLL leukemia: Just diagnosed, what can be done? https://connect.mayoclinic.org/discussion/cll-leukemia/

I went to Hematology and the Dr read the biopsy results. He says I probably am in stsge 3 NHL. He gave me the biopsy report which says nature low grade can cell lymphoma most consistent with small lymphocytic lymphoma/chronic lymphocytic leukemia. I’m scheduled for bone biopsy and PET scan. What’s disturbing to me is that I read that the Covid vaxs can overstimulate b and T cells and cause lymphoma. I think that this should have been published and I know I would never have gotten mnRA injected in me. I’m very disturbed and upset. I remain prayerful as this is becoming too big for me to accept.

The pet scan and bone marrow biopsy will give you more in depth answers and guide the doctor with a treatment plan for you. Although I have T-Cell Prolymphocytic Leukemia, so many things are similar with these types of leukemia. Do you know if your B or T cells are involved?
It is such an anxiety rollercoaster for sure.
I have wondered about the vaccines I had too. I was in great health for my age, then bam my wbc's started climbing even after taking antibiotics and have stayed that way. That is when I was referred to my Hematologist who diagnosed me. Keep the faith and read all you can. Don't be shy about asking questions. I wish you the best as you continue your journey. Hope this helped you in some small way.

Hi Sharon. Thank you so much for your comments and well wishes. I thought I was pretty health too until I got the Vovid vaccines and boosters. My WBC count was extremely high also and thst was frightening especially since I was unaware that something was wrong. I prayed no cancer and then hit the biopsy results. I’m praying for all on this journey.