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I may have low grade lymphoma or it could be from inflammation
I’m very frustrated, during a MRI on my lumbar spine they found an enlarged retroperitoneal lymph node, I was sent to have a CT scan then a PET scan. I was then referred to an oncologist, I was told that I may have low grade lymphoma or maybe it was inflamed because of inflammation from my arthritis in my spine.
I was sent to have a needle biopsy but there was no clear path for a needle biopsy. I was next sent to a surgical oncologist who determined that he could not do the biopsy by laparoscopy either, the other option is too invasive at this point. I feel fine, my bloodwork is all normal. I am on the watch and wait plan, CT scan and bloodwork every 3 months.
So, basically I’m trying to figure out how to live not knowing for sure if I do or don’t have lymphoma!
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Just to add clarity, this is all very new, saw two doctors about biopsies and my oncologist and got all this info all within last two weeks, it’s all still really setting in! I am still at freak out stage!
You do make a lot of sense, I just have to get to a stage where I can make sense of this, and move on.
I loved your quote, first thing I did after reading it was write it on my white board!
I will get to the point where I make peace with not knowing. I did not know that not knowing was actually a possibility so it hit me really hard!
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2 ReactionsI understand. When a possible brain fenestration/aneurysm was found accidentally during a CT scan and the radiologist recommended a CT angiogram, I was not thrilled when my PCP was in no hurry to order the CTA. His logic was that I may have had it for years so there was no urgency. It was reassuring to know that but I still wanted to know what the situation is. It was so comforting to know that I was able to leave the imaging center after the scan. That is all the technician could tell me.
I wish I could answer your question about flow cytometry.
It surely does take time to assimilate the roller coaster ride of emotions we go through when first diagnosed with a potentially life changing issue. And I can appreciate what you’re going through trying to be patient, waiting for a definitive answer. Not knowing makes it difficult to come up with a plan of action going forward. Easy to be in that freak out stage!! Been there, done that, bought the shirt! 😅 Says, Mayo Strong, on the front!
I think it’s just human nature to ‘think the worst’…whatever that is. I’m sure the definition is different for each of us, however nebulous it might be. But what I have learned is that every moment I spend worrying is a moment of life wasted. So I hope your brain wraps around this new ‘un-diagnosis’ soon so you can get on with enjoying life without this nagging specter following you about.
When is your next set of labs/CT?
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2 ReactionsIt is just very frustrating! I am very early into this, about two weeks after finding out I can’t get an actual diagnosis, it came
as a complete shock. I went into each appt for biopsy expecting to have orSchedule a procedure and actually have a diagnosis, certainly not be in limbo. I have not had time to learn to live with my lack of diagnosis yet.
End of May and appointment with Oncologist first week of June.
Honestly, my gut tells me it’s all because of inflammation, I have been being treated for arthritis in my lumbar spine for 12 years. I get injections frequently. But, I have all these really highly specialized doctors out of Northwestern Medical centers taking this all very seriously, and that scares me.
I know low grade lymphoma is nothing compared to most cancers and feel a little foolish about it all, it’s really hard to hear the word cancer and not think CANCER!!
Not being able to actually get a
Diagnosis is really frustrating! How often does that happen?
Not being able to get a firm diagnosis-not just cancer- happens more than you might think. As advanced as some of our medical testing is, there are still situations where it’s challenging, whether solid tumors, blood cancers or lymphomas. Blood cancers can sometimes be especially difficult with the different subtypes instigated by varying mutated genes. There can be subtleties between subtypes making the underlying disease hard to differentiate.
Honestly, from my perspective, it’s really comforting that you have the highly specialized doctors at Northwestern taking this seriously. Fingers crossed, your situation may turn out to be inflammation as you’re suspecting. But if not, to have a dedicated team that is monitoring you with followups, is priceless! And don’t diminish a low grade lymphoma in comparison to someone else’s case. Cancer is cancer and large or small, it strikes fear in the bravest souls! It’s how we handle the diagnosis that gets us through the worst of times.
So, give yourself some grace while you work through things. Finding an activity such as art, sewing, writing, where your hands and mind are focused, allows for some incremental healing. Subconsciously, your mind is still ruminating on the ‘lack of diagnosis’ while the activity allows you the opportunity to refocus and escape! Little by little, daily, as nothing new develops, your negative thoughts get put on the back burner. Soon enough you’ll realize you’ve gotten through an entire day without even thinking about what has you addled right now. ☺️
So let’s change your thoughts of being IN limbo to doing the “Limbo Rock“ Remember that song by Chubby Checker? 😂. How’s that for an earworm?
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2 ReactionsI really needed to hear your words today. I am in a heightened surveillance mode (bone marrow biopsy next week). 💜
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3 ReactionsHi,
I feel for your frustration. I, too, am experiencing some frustration too as my O/H reported that I have ET but changed that to maybe “might be transitioning to Primary Melofibrosis (PMF) which is treated differently” and leaving it at that. I am taking nothing. She came up with the first diagnosis 1-10-25 and second possible diagnosis 2-10-25, so all very fast! So right now, I just let it all be and now do not stress as I feel fine and realize docs do not have a special test that really determines things exactly, at least in my humble opinion. I saw a rheumatologist in that same window of time for painless joint inflammation that I do have and she said she did not know what I have which at least I was an honest answer although also frustrating. For a while I did experience a lot of anxiety about all this, but now I really do not. For me exercise and keeping very busy help be stay away from anxiety producing thoughts. I wish you positive thoughts and hope you do get more answers for your situation soon.
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1 ReactionGood morning, @drawlings0803 Oh my goodness, I’m so sorry you’re going through this rough patch right now. But it’s wonderful you reached out to Connect. It can be a real lifeline for anyone feeling alone in their journey. You’re never alone here! ☺️
Do you have any questions about having the bone marrow biopsy? That’s nothing to fear. I’ve had 13 of them over the past few years and while there might be some mild discomfort, the biopsy is an important tool for your doctor to get the full picture of the health of your bone marrow and its ability to produce healthy blood products. It can also aid in diagnosing or confirming certain medical conditions.
Knowledge is power. So getting the results will allow you and your doctor to make decisions with forward movement to return to good health!
Were you recently diagnosed with lymphoma or another condition? What were your symptoms that led up to all the testing?
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