Undiagnosed: Lymphoma or Sarcoidosis

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Hello, my name is Thomas. I am 32 years old. I am Caucasian and a male. Ex smoker of nine years. I quit five years ago. I am going through steps on getting a diagnosis. Brief history on what's going on. 

I am a Pharmacy Technician in a hospital and while I was working back in June 2018, I started getting really sharp pain underneath left shoulder blade that eventually got extremely painful and went to my chest, especially when inhaling/exhaling. I ended up in the emergency room. They immediately suspected pleurisy. They took blood and a chest X-ray. Chest X-Ray showed was completely abnormal. Showing Bilateral filling in hilar as well as enlarged lymph nodes in mediastinum. As well as a airspace opacity in my upper left lobe. After they did A Chest CT with contrast that confirmed bilateral lung infiltrates with ground glass opacity, lymph node enlargement in the hilar, mediastinum, and one in the gastrohepatic area. Specific nodes noted was, right paratracheal, subcarinal. The largest one measured 2.5 CM.

They suspected pneumonia but said other things couldn't be ruled out (HIV, Tuberculosis, Lupus, Lymphoma and Sarcoidosis). I started a 10 day course of Doxcycycline After a follow up they decided to do another CT with Contrast in 5 weeks to see if there is an improvement. Blood was ran to rule TB and HIV which both were negative. ACE was done which was 41 which is considered in normal range. LDH was 210 which was also in normal according to the labs. A day later I started bringing up mucus with blood in it. After finishing the antibiotic both the mucus/blood and pain went completely went away and has not come back which made me think I actually did have an infection. The 5 week repeat showed improvement in the main infiltrate in the upper left lobe and mild improvement in the other infiltrate in the other lobe. Some of the lymph nodes shrank 2-3 MM. The one that measured 2.5cm was now 1.9 cm. This scan showed some borderline spleen enlargement though. My GP was done with it even though resolution was completely there. 

I decided to get a second opinion with a pulmonologist. He decided to do another CT in another 5 weeks. This scan, according to the radiologist showed no change however the lymph node noted was 2mm less compared to the previous. My pulmonologist confirmed that there was very slight improvement but my spleen has increased in size by 2 CM. He is thinking Lymphoma or Sarcoidosis at this point but spleen leans more towards lymphoma. I had a PET-CT done a few days ago that showed some uptake supraclavicular area although that area isn't enlarged. enlarged mediastinal and hilar lymph nodes with the hottest uptake at 15.3 in the mediastinal. Retroperitoneal lymph nodes with uptake measurement of 12.2. Spleen enlargement was again noted and findings were concerning for a process such as Lymphoma. 

After a follow up with my pulmonologist, they now want to do a biopsy with bronchoscopy-EBUS or mediastinalscopy. I chose bronch first, then the other if the broncho fails. My Dr. is still leaning more towards sarcoid and said that sarcoid can make a PET light up. I'm just not convinced since there was some really hot areas but I don't know. Anyway, very anxious about this. I just want some opinions about this. As of now I have no symptoms related to lungs. Never had shortness of breath. The symptoms that I did have have went away after antibiotics. I understand the most if not any of you are doctors and I am not looking to get a diagnosis on the internet. I'm just curious if any of you have had an enlarged spleen at diagnosis and had uptake on your petscans. Thank you in advance for the help.

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  • Posted

    Hi tommydorns,

    I had to reply to your post because I do understand what you are going through. My enlarged hilar nodes where 3cm on the left side and 5cm on the righ. My symptoms were coughing, wheezing, tiredness and shortness of breath. I also had the same pain you felt in the chest and major ankle swelling. I live I'm Canada and was told via CT scan that it would be mostly likely sarcoid however the doctors did need to confirm no lymphoma due to the large size. EBUS was performed and sarcoid was confirmed. My spleen is slightly enlarged due to sarcoid but I on no meds and getting much better. I do drink green tea and tumeric tea. I also take tumeric 1000mg with black pepper everyday. I don't know why your doctor's didn't order a EBUS earlier? I also took biaxan before the CT scan which did help calm the cough. I will be praying for you and hope it's the lesser. Keep us posted and if you have any questions please ask.

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  • Posted

    Hey there,

    I’m so sorry.  I was at that point eight years ago and had to wait for lung biopsy to get sarcoidosis diagnosis.  It took two weeks and I was really stressed out.  I started getting pleurisy in my late teens - I’m 54 now.  Yes I had spleen issues, stomach issues etc. all sarcoidosis related in hindsight.  I take prednisone when I have to and strict paleo non gluten no sugar diet.  It’s working well.  Keep in mind you can’t change a thing about what’s already happened...deal with the answer when it comes.  It’s hard but best advice I’ve lived out so far - life is short live it ❤️

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  • Posted

    This whole process has been very stressful. At first, I was a little scared, but now I am at the point where I want to find out for sure. Everything I have read about Sarcoidosis reflects my CT presentation so I understand why they think it is Sarcoidosis. The did ask me if I have had swollen ankles which I haven't. Between the two conditions obviously I would rather have Sarcoid. It's odd that my lymph nodes reduced between CT scans and the infiltrates did improve after Doxycycline. Coincidentally, i've read that Sarcoid gets better with the Tetracycline family of drugs. I don't know who true that is. I've read that PET scans do light up as cancer on a PET scan too. I am glad to hear in a funny way that enlarged spleen can happen with Sarcoid. Could not find that when searching for causes of enlarged spleen. Anyway I appreciate the replies. I will keep everybody posted. If this procedure is successful, I should find out for sure within two weeks. The Pulm I'm seeing doesn't planning on treating it if it is Sarcoid. He seems to think it wouldn't be an issue but I've read a lot about chronic sarc so I will be trying to find a Dr. that knows a lot about it.

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    • Posted

      Hi tommydorns,

      Sorry to hear you're going through the mill.

      You may well have your diagnosis by now. If it's sarcoidosis read on.

      I'm the SarcoidosisUK Patient Ambassador,

      If you'd like more information on sarcoid, the UK charity for sarcoidosis (which I volunteer for) has lots, including consultants who treat it in UK. If your own doctors are not fully aware of sarcoidosis and it's different manifestations, you might try one of them. https://www.sarcoidosisuk.org/

      You're correct that Tetracycline could help sarcoidosis but you've no doubt done a lot of research into this and will understand the scientific references more than I would not being medically trained. However usefulness  may well depend on what caused the sarcoid activation in each. 

      Sarcoid has only a few "rules" to help doctors diagnose with or without biopsy but I rarely follow those. ACE is only raised in 60% of those with active sarcoid (my serum ACE never has been raised in 44 years). PET will only show active sarc so any symptoms from previous activity, won't be confirmed through this. (personal experience)

      Sarcoid is an immune system disfunction so sytemic and can affect any part of the body. PET scans have been really helpful in finding active sarcoid.

      "Splenic involvement is reported in up to 40% to 60% of patients (3). Splenic involvement with sarcoid usually presents as either splenomegaly or, less commonly, as multiple focal splenic lesions, and patients are often asymptomatic or can present with systemic constitutional symptoms."

      ?From; https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3202352/

      You'll find more from these respected sarcoid pages.

      https://my.clevelandclinic.org/departments/respiratory/depts/sarcoidosis

      https://www.mayoclinic.org/diseases-conditions/sarcoidosis/diagnosis-treatment/drc-20350363

      http://www.wasog.org/

      https://www.hindawi.com/journals/bmri/2013/935289/ "The results of a nationwide questionnaire survey, performed by a Japanese research group in 2005 (reported in Japanese), indicated that antibiotic therapy was effective in 43% of 87 patients with sarcoidosis treated with many kinds of antibiotics, including minocycline, doxycycline, and clarithromycin."

      Best of luck,

      Jacqui

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