Hilar lymphadenopathy

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Lynn_65
Lynn_65 Member Posts: 63 Member

I was in the ER Saturday for what had been diagnosed as cellulitis 2 weeks earlier. I had many tests including a chest X-ray followed by a CT scan that showed bilateral hilar lymphadenopathy. It was suggested I follow up with my oncologist on Monday. He has suggested a PET scan. 

I was just wondering if anyone has had a similar experience. I was diagnosed with clear cell renal cell carcinoma in January 2020, followed by removal of 20% of my left kidney. Pathology report was good with clear margins, Fuhrman grade 2, pT1apNX, greatest dimension 2.6 cm, no sarcomatoid or rhabdoid differentiation.

My oncologist is very cautious and I have a ct scan every 6 months. This was not present on last one in June. I am of course very anxious. The wait for a PET scan is several weeks, unless there is a cancellation.

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  • po18guy
    po18guy Member Posts: 1,487 Member
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    Sorry to hear this. Did your symptoms respond to the medication given at the diagnosis of cellulitis? I was given in-patient IV antibiotics when I was diagnosed with it. Cellulitis? Can be fatal! Darned right your immune system is highly active against it. Alternatively, we are living in the age of lymphadenopathy. Viruses, bacteria, vaccines - all trigger the immune system and all cause lymph nodes to expand. Have you have Covid? If so, could it be "long Covid"?

  • Lynn_65
    Lynn_65 Member Posts: 63 Member
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    Thanks for your response. After 1st ER visit I was admitted for 2 days to receive IV antibiotics, which seemed to help. Then sent home on 10 days of oral antibiotics. However, my right foot began to swell, turn angry red, like the left.

    High blood pressure and cholesterol run in my family. I was on 2 low dose meds, lisinopril hctz 10/12.5 mg and amlodipine. First ER visit dr takes me off of the lisinopril. Second visit different dr says amlodipine can cause swelling in your feet, takes me off that and puts me back on lisinopril(since it contains a diuretic). Long story short, 2 days later my feet are not swollen, but now I’m faced with this new finding.

    My husband and I feel like I may have been misdiagnosed with cellulitis and the swelling/pain in my feet was from my swollen lymph nodes all along. Waiting for an appointment is so hard.

    I have had three Moderna Covid vaccines and then tested positive for Covid in August 2021. It wasn’t bad, seemed more like a bad sinus infection.

  • po18guy
    po18guy Member Posts: 1,487 Member
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    Well, digging a bit, I find that the 'bi-lateral' aspect of adenopathy sends it toward the inflammatory condition arena, and there is no mention of cancer. I would take this as very good news - except for tracing the cause of the inflammation. From: https://www.sciencedirect.com/topics/medicine-and-dentistry/bilateral-hilar-lymphadenopathy

    "Inflammatory Disease

    Unilateral or bilateral hilar lymphadenopathy and bronchial narrowing can be seen in a number of infectious or inflammatory conditions. Primary tuberculosis usually causes unilateral hilar adenopathy. Fungal infections, most notably histoplasmosis and coccidioidomycosis, cause unilateral or bilateral adenopathy. Sarcoidosis causes bilateral and symmetrical adenopathy in most patients (see Fig. 5‐11). Silicosis and coal‐worker's pneumoconiosis are also commonly associated with bilateral hilar lymph node enlargement."

  • Lynn_65
    Lynn_65 Member Posts: 63 Member
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    Thank you for the digging! I’m now scheduled for a PET scan on October 5.

    I also posted this on the kidney cancer forum and had a couple responses that were encouraging as well. I truly appreciate all the support!

  • po18guy
    po18guy Member Posts: 1,487 Member
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    You are very welcome! With cellulitis, you most certainly had an inflammatory condition occurring. Your immune system was in overdrive. Cellulitis - a really puffy name for a potentially fatal infection - is, well, horrible. For a moment, I considered having my leg amputated, but the antibiotics did the trick.

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,815 Member
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    Lynn,

    Lymph nodes in their 'normal' architecture (shape) have a visible hilum, or cleavage region, in which most connected vessels flow in and out; think of the center of the concave ridge on a butter bean -- that is somewhat how the hilum looks. When a node is swollen as a response to infection or engorgement with cancer cells, the node becomes rounded, to the point that the hilum is not grossly visible (visible to a naked eye exam).

    So, loss of the hilum proves some sort of immune activity, but by itself does not prove lymphoma or other cancer in the lymphatic system. In the world of pathology and diagnosis, however, it remains a risk indicator for malignancy, and must be monitored further, at the least, verses immediate biopsy.

    My recent aspirational biopsy showed, among other abnormalities, loss of the hilum on a few nodes via Flow Cytometry, and noted in the comments that it was cause for suspicion of lymphoma, but there was no diagnosis at that time, because an excise (surgical removal) is necessary for slide staining of samples.

    While cellulitis is the potential cause, it is not the only one.

    Note the Following:

    (1) IF there were renal cancer colonies in certain lymph nodes, that would be 'renal cancer in the lymphatic system,' and would NOT be 'lymphoma';

    (2) Based on what I have read and followed, and what the CDC has published for public consumption, the likelihood that these enlarged nodes are from COVID or COVID vaccines is very close to zero;

    (3) We want our oncologists to be worriers, but worriers who do not instill worry into us as well. Any previous cancer demands a level of Due Diligence in our care providers. At lease Active Surveillance is clinically suggested in your medical presentation.

    We members here have no medical training, and write as laypeople sharing what we have learned 'the hard way.'


    .

  • Lynn_65
    Lynn_65 Member Posts: 63 Member
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    Thanks for your response and info. I’m glad my oncologist is on the cautious side.

  • Lynn_65
    Lynn_65 Member Posts: 63 Member
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    Update: PET scan was Wednesday and received results Thursday.

    The radiologist’s impression reads “interval development of extensive hyper metabolic and pathologically enlarged hilar/mediastinal adenopathy. In addition there is a right upper lobe nodule measuring 1cm in size. This could be due to primary lung neoplasm, inflammatory process such as sarcoidosis, lymphoma, or metastatic disease. Consider mediastinal node sampling.”

    So my oncologist has referred me to a pulmonologist to have a biopsy by EBUS. Meet with him Monday for consultation. 

    Still unsure of what all this means, but at least my appointment with pulmonologist is soon.

  • po18guy
    po18guy Member Posts: 1,487 Member
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    Radiologists must take note of and raise red flags at each and every aspect of your scan which does not exactly resemble the 'perfect human' in the wall chart in doctor's office. It seems clear that there is some disease process, but what it is remains to be seen. A 1cm node is not outside of normal size, but hyper-metabolic activity in that node is reason to investigate.

  • Lynn_65
    Lynn_65 Member Posts: 63 Member
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    Biopsy done on October 13 and received a call this morning saying that it wasn’t malignant (praise God!) but they did find some bacteria. I go in Friday 8am to find out what the treatment plan will be…steroids, antibiotics or both. 

    Thank you all for your prayers, encouraging comments, and concerns!

  • po18guy
    po18guy Member Posts: 1,487 Member
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    Good! Still bears watching during therapy, as infection can take us far faster than cancer.

  • Lynn_65
    Lynn_65 Member Posts: 63 Member
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    Met with pulmonologist and he confirmed NO bacteria was found, not sure why the caller said anything about bacteria or if I misunderstood because I was so thankful it wasn’t malignant! 😊

    Was given option to treat for sarcoid or have a mediastinoscopy to remove entire node and get a definitive answer, to rule out lymphoma. We are taking weekend to think and pray about it. Leaning towards having the procedure for 2 reasons, to definitively rule out lymphoma and to possibly not have to take months of steroids.

    Anyone ever had this procedure done? Any opinions?

  • po18guy
    po18guy Member Posts: 1,487 Member
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    Avoiding steroids is always a good thing. As to the procedure, I have only had biopsies from the other end. Since you will be out during the procedure, I would imagine that the primary side effect might be a slightly irritated airway for a few days. It is minimally invasive and I would imagine that a course of antibiotics might follow. But the knowledge that will be gained will be of comfort - which ever way it goes.

  • Lynn_65
    Lynn_65 Member Posts: 63 Member
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    Having the procedure today, ready to get it behind me and have that definitive answer. A little anxious but know God will be with me and the surgeon. I believe you are right about the antibiotics, paperwork indicates I may be getting them by IV even before the procedure.

    Thanks always for your encouraging replies!

  • po18guy
    po18guy Member Posts: 1,487 Member
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    You have faith. Just trust that you are in good hands wherever you go.

  • Lynn_65
    Lynn_65 Member Posts: 63 Member
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    Everything went well yesterday and was able to come home after a couple hours in recovery. It was a little more involved than I expected, I had to have a central line in my neck and an arterial line in my wrist but glad they were on the cautious side. Thankfully I did not require blood. No complications and they got enough tissue. Glad to have it behind me and be home. Now the wait for results.

  • po18guy
    po18guy Member Posts: 1,487 Member
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    It is strangely comforting to fund what it is, even if not the best news. However, we are hoping and praying for the best!

  • Lynn_65
    Lynn_65 Member Posts: 63 Member
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    Pathology results came in yesterday, praise God it’s not lymphoma or cancer, more consistent with sarcoidosis. I know that’s not a great diagnosis however I wasn’t having any symptoms other than my feet swelling in September. My lung function is normal, and all bloodwork is normal. I meet with pulmonologist today to discuss treatment/options. Will update later.

  • po18guy
    po18guy Member Posts: 1,487 Member
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    Well, that is good news, if you know what I mean. Sarcoidosis is a mysterious condition, and is diagnosed by the elimination of alternative causes. Most cases resolve on their own and until definite cause is shown, I believe that simply addressing the symptoms is a likely course. From the mechanism of action, it would appear to be a type of auto-immune condition, but further study is needed. You might even consider/ask about a clinical trial, as aside from treating symptoms, there is little which may be done.

  • Lynn_65
    Lynn_65 Member Posts: 63 Member
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    Pulmonologist suggested 8 weeks of steroids, 20 mg daily for the 1st two weeks, then 10 mg daily for remainder of the time. He believes this will “knock out” the sarcoidosis and put me in remission. Then I will have a follow-up CT scan in three months.

    He has ordered an echocardiogram to make sure heart is not involved and wants me to see an ophthalmologist to make sure eyes aren’t affected.

    What a wild ride the last several months have been. The 1st time I met with the pulmonologist he said his preliminary diagnosis was either small cell lung cancer(never a smoker) or sarcoidosis. He thought SCLC because of how fast there was a change in my scans, “bulky lymphadenopathy” from June to September.

    Not looking forward to starting the steroids next week (he wants me to wait another week til I’m fully healed from mediastinoscopy) but praying that I am able to take them with no ill side effects and they put me in remission!

    I truly appreciate everyone’s comments and support here! ❤️🙏🏼