Likelihood of Lymphoma vs. Sarcoidosis

Posted by susanmcaulay @susanmcaulay, 5 days ago

I am just plain scared. When I had a calcium score test, the radiologist noticed an enlarged lymph node. My cardiologist reviewed it and called me right away. Within a week, I met with a blood and cancer doctor. Then I had a pet scan early this week.
I also met with a rheumatologist because I had symptoms that pointed to a possible autoimmune disease--rashes, mouth sores, inflammation, joint pain, etc. She also gave me an ACE test. That came in very high. However, from what I read, it can be high for sarcoidosis or lymphoma.
My pet scan revealed numerous enlarged lymph nodes throughout my lung cavities and upper abdomen. Most of these enlarged nodes were not very large but were very active.
For example, -Ill-defined right hilar nodal uptake SUV 9.6, left hilar SUV 9.1. -FDG-avid right paratracheal lymph node cluster SUV 12.1. -Subcarinal nodal conglomerate SUV 12.8, 1.5 x 0.6 cm. -A lower left axillary node image 2:111 1.5 cm minimal uptake SUV 2.4. In my abdomen, portal, and upper retroperitoneal regions. For example: -The portacaval node image 2:188 1.1 x 3.0 SUV 16.5. -A hepatic portal node image 2:183 2.3 x 1.4 cm SUV 13.0. -A small left para-aortic node image 2:210, 1.0 cm mildly avid SUV 4.1.
There were no suspicious lung lesions or FDG avid breast lesions.
From everything I am reading, these kind of SUV numbers are more indicative of lymphoma than sarcoidosis.
But I am afraid, with so many enlarged nodes and such high SUV numbers. I will be meeting with my doctor Monday and I am sure a biopsy will be soon after.
It is so odd to feel like I can have cancer when I do not have things like night sweats or unintended weight loss. I am only in the last week or too feeling fatigue, as well as, now, a mild but persistent sore throat.
I am also afraid that not only will this turn out to be lymphoma but that this will not be the wait and see kind but the kind that will need aggressive treatment.

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aoifet | @aoifet | 4 days ago

Hey, sorry to hear you are having to deal with some of that uncertainty. Not everyone has those "B" symptoms, I didn't. I hope this means for you it was found early, also. I also had/have (?? I am still in the middle of treatment, so waiting to see how my response is) multiple active lymph nodes and some soft tissue masses, and when so many areas seem suspicious or concerning, it can absolutely be overwhelming.
I had to remind myself numerous times prior to my diagnosis that the main thing that is definititive will be a biopsy. And we did several before we finally nailed mine down to marginal zone lymphoma. That feeling of being in limbo is tough to deal with. As you come across questions, concerns, etc., I hope you feel comfortable sharing in here or directly with others that support you emotionally.
Please keep us updated, take a deep breath, maybe find something that can keep you grounded in the present moment. We are here for you.

jayreale | @jayreale | 4 days ago

I had "innumerable" enlarged lymph nodes from my chest through to my pelvis and my PET showed two masses in my colon. They ordered a colonoscopy and took a sample from that, which confirmed mantle cell lymphoma. I started immunotherapy (infusions) and targeted therapy (pills) in late May. Aside from a couple of minor reactions (a rash, slight fever...both of which were resolved quickly), my normal daily life continues...daily workouts, surfing, work, etc. If you do end up with lymphoma, it's one of the most treatable cancers there is and some types are curable (mine isn't). Don't stress too much. You've got this!

carolm25 | @carolm25 | 2 days ago

@susanmcaulay
Please don’t be fearful if lymphoma in nodes. Two years ago like you I had no symptoms but was diagnosed with LDBCL in my abdomen. I chose a trial to use Car-T therapy as the first line therapy as opposed to the standard at the time of chemotherapy. The Car-T was like magic. I was pronounced in remission within weeks and am still in remission over two years later. Everything I have read on Car-T for blood cancers (lymphoma included) since then is the great results. The only downside of Car-T is some serious fatigue for some time and watching your immunity. I have yet to hear how those issues compare with the older stand chemotherapy. Bottom line is the lymphoma is gone. Best wishes and I recommend researching Car-T because the more research I did the less anxiety I felt. I never had pain nor nausea, in fact my appetite was stronger than usual. The nutritionist recommended lots of protein and strength training beforehand. Its important. I was 79 at the time so if you are younger you might have even less fatigue than I.
Best wishes for eliminating your fears.

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