EBUS procedure tomorrow, possible lymphoma or sarcoidosis

Hello forumites,

It took six months to go from a persistent dry cough, to a CT scan that showed "lots of big lymph nodes and some nodules". Not what I wanted to hear!

Along the way, I had blood tests with odd results, but when repeated six weeks later the blood had returned to "normal". I was on an anti-reflux drug for a month, in case reflux was causing my cough. I had a chest Xray, which showed a vague oval shape, so I was given follow-up Xray six weeks later, but the vague shape was still there, so I was booked in for a CT scan. The worst part is the waiting for an appointments, then waiting for the results. Waiting at every stage, and never knowing how long the wait will be.

The doctor phoned with the CT scan results, and said "It's not good news, unfortunately". Lots of big lymph nodes and some nodules. Possibly lymphoma. Possibly sarcoidosis, which can still be very nasty but would definitely be the better outcome of the two.

So tomorrow I'm having an EBUS procedure. Endoscopic Bronchial Ultrasound. The EBUS device is a tube that it poked into the lungs, and it's a truly remarkable piece of technology. Although it's only 7mm diameter, it contains a light, a camera, an ultrasound scanner, an inflatable water-balloon to get better ultrasound pictures, a tube that can spray local anaesthetic, a tube that can suction blood, some wires that can steer the tip to various parts of the lungs, and a retractable needle that can pierce through to a lymph node to suck up some of its contents for analysis.

It's an amazing device, and I'm fortunate that it has been recently invented, as it can provide a much better diagnosis than older bronchioscopes.

Nevertheless, it's going to be an uncomfortable procedure and I'm not looking forward to the discomfort, but I'm quite positive about the overall process.

I'm 62 and still very active, hiking in the hills 20 miles a day, so I'm not quite ready to be going downhill yet. We'll see what happens.

Roger.

  • I had the Endoscopic Ultrasound today. The whole process took 6 hours, although the procedure itself took less than an hour. The rest was waiting, preparation and recovery.

    I was quite relaxed about the procedure, but I spent most of the time coughing wildly, even with sedation and with five applications of Lignocaine spray (local anaesthetic). The consultant wrote on my notes "Excessive coughing. Airway mucosa very sensitive to touch with scope." The nurse held my hand and assured me it was going OK.

    They found some BIG lymph nodes: mediastinal was 25mm, 11R and 4R were 20mm. One slight positive sign was that the consultant wrote "Nodes quite hard to puncture. I suspect chronic.". This makes it a little less likely that it will turn out to be lymphoma, although it seems my presentation is not typical for anything.

    Now for the wait. The team discusses results every Thursday. It's theoretically possible that the results will be back from the lab by this Thursday, but unlikely. It's an odd situation with Covid at the moment - some things take forever to happen, but some parts of the healthcare system are underutilized and responding quite quickly. We'll see. And even after the team gets my results and discusses them, I expect to need an appointment to discuss them.

    Let the waiting begin...

  • I got my result yesterday but it was inconclusive, so I'll need more tests. I've posted the details here, in the "Awaiting Diagnosis" sub-forum because it seems more appropriate than here:
    www.cancerresearchuk.org/.../broncoscopy-biopsy-didnt-help-now-having-a-neck-biopsy

  • Hello,  it seems we have the same problem.   My ct scan showed enlarged lymph nodes in my neck, chest and armpit.   I had a neck biopsy a couple of weeks ago, which unfortunately didn't reveal anything conclusive.  Yesterday I had an EBUS , so it's back to waiting again. 

    My consultant thinks it's sarcoidosis or lymphoma, but I myself think its the latter.   

     

    Let's hope we both get good results.   

    Take care.   Colin. 

  • Hello Colin,

    Your situation does sound very similar to mine, although you were given your neck biopsy before your EBUS, and I had my EBUS first.

    My consultant is also looking to determine whether it's sarcoidosis or lymphoma, but personally I think it will turn out be something different, just because I don't have any of the other symptoms of those two.

    The focus on sarcoidosis and lymphoma seems to have started with the report from my CT scan, which listed those two as the most likely possibilities.

    Best Regards,

    Roger

  • So, Colin, I guess you've had the results from your EBUS procedure now. How did it go?

     

    Roger.

  • Yes, I spoke to the doctor at the chest clinic the other day.   Nothing untoward showed up from one  of the  samples, which is good.  They're still waiting for the results of another, which apparently will be another week.    Anyway, thanks for asking, what's your latest?

    Cheers.  Colin. 

  • Hi Colin, I'm glad the first part of your results is encouraging, let's hope the second set of results is the same!

    I still have no diagnosis, and I'm awaiting a more invasive procedure - a mediastinoscopy under general anaesthetic. However I'm unlikely to get a result before the end of the month. I hope my body doesn't go downhill too much in the meantime :(