I was diagnosed in 2020 with cold agglutinin disease (CAD) following years of symptoms that match many different ailments. Luckily, testing was done and my CAD was diagnosed quickly.
I found that the standard tests after blood work to confirm CAD were a bone marrow biopsy and a full body scan to look for lesions and anything out of the ordinary that could point to an underlying condition. Nothing was found, and my diagnosis was finalized as primary CAD.
I have wondered from time to time if I should be doing repeat testing to make sure nothing new is going on. I asked the members of the Facebook group I belong to if anyone had done repeat testing and the responses were all over the place. Some said that they have had multiple bone marrow biopsies and scans, while others said that their doctors told them unless symptoms start to show, there’s no reason for additional testing.
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Honestly, the bone marrow biopsy is not something I would like to repeat, as it was incredibly painful. I chose to do it with only local anesthesia and the pain was very intense, but thankfully, it only lasted a couple of minutes. Obviously, I will do again it if needed.
Read more about how CAD is diagnosed
Recently, Rare Disease Advisor (RDA) ran an article that rekindled my thoughts on repeat testing, which is what led me to ask my question on the Facebook page, CADdy Chatter. In the RDA article, a patient had CAD for 3 months before discovering he also had a mass in his abdomen. After further tests, it was determined that he had developed low-grade B cell lymphoma believed to be associated with his cold agglutinin syndrome (CAS).
It has been my understanding that not all patients diagnosed with primary CAD will develop cancers. In fact, many of the people I have met through discussions have had CAD for years and they have been fine, meaning they’ve remained primary but have had to deal with the constant cold exposure symptoms.
I wonder how prevalent lymphoma with CAD is? I could not find a definitive answer to this question. Apparently, this has not been studied yet. This is quite possible, considering how rare CAD is.
I think about this because my dad recently passed from large B cell lymphoma after successfully being treated for follicular lymphoma. I have other family members who have follicular lymphoma who are treated here and there and remain fine. Will I stay cancer free? Am I at a higher risk?
What makes me nervous is that even though research suggests lymphoma is not inherited, there is a higher chance of getting it if a parent or sibling has had it. And the scary part is that I have found people with primary CAD usually have lymphoproliferative disorders. These disorders are classified as acute lymphoblastic leukemia, chronic lymphocytic leukemia, lymphoma, and monoclonal gammopathies.
Read more about testing for CAD
For the past 3 years, I was under the impression that because I have primary CAD, I don’t have an underlying condition. I do know that something could pop up, but I’ve buried my head in the sand a bit. I didn’t realize the prevalence of these serious diseases associated with primary CAD.
The article from RDA opened my eyes and sent me down quite the rabbit hole. It is true that if you keep digging, you will find something to support your concerns. However, I didn’t just find something; I found many articles that discussed lymphoproliferative disorders in primary CAD. In fact, they discuss how these disorders are well known, which leads me to my doctor. Why has he not said this to me? Instead, we’ve always discussed my treatment, which I have been dead set against, as I am doing well.
Now the conversation needs to be about what are considered “best practices” in following someone with CAD. I can keep doing blood tests indefinitely, but they will only tell me so much. Yes, my hemoglobin will be low and my LDH will be high, and other “markers” would be off the charts if something is going on, so blood tests are important. But why would we wait until then to know if something is going on? To me, annual or biennial testing beyond regular labs needs to be done.
The easiest way to treat anything is to catch it as soon as it pops up, not when you find a swollen lymph node. I find this genuinely concerning and it warrants a conversation with my hematologist.
