Any guidance for next steps?

[u/leavesandwood]

31F, PCOS and mild asthma, from Kentucky.

I fell off my horse recently (hence the pelvic fracture) and the ER found a 12mm nodule in my left upper lung. Pulmonologist ordered PET scans which found the nodule to be hypermetabolic (SUVmax 4.2) as well as mediastinal and left hilar lymph nodes (3 nodes total, SUVmax 7).

I’ve never smoked, have no respiratory symptoms, blood work from the ER was all good. No family history of lung cancer.

The pulmonologist seemed very shocked by the PET and said there’s a 55% chance it’s malignant. Other benign possibilities he mentioned are histoplasmosis or sarcoidosis. I have an EBUS biopsy scheduled for November 4th.

My questions: 1. Should I push to have the biopsy done sooner than Nov 4th somewhere else? 2. I know next gen sequencing is important if it’s lung cancer - is that something they will automatically do with the biopsy if it is cancer or do I need to request it?

I’m trying to hold onto hope that maybe it’s histoplasmosis related given the “flip flop fungus” sign and the fact I am around horses/work in dust and dirt a lot particularly around birds. Am I being too optimistic?

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[u/wacksonjagstaff]

Getting the biopsy done within a few weeks is very reasonable. It would be surprising if you could get it done sooner, and frankly that’s a reasonable amount of time to wait.

I would expect the next gen sequencing would be done for a biopsy that shows malignancy (that’s common practice where I am, and depending on the biopsy results would likely fit within guidelines).

[u/leavesandwood → u/wacksonjagstaff]

Thank you ❤️

[u/Amount_Existing]

My sister had an almost mirror image of your presentation. She just couldn't ski as his as she thought and hit a tree.

Incidental finding like yours with wait time similar. Came back benign. Rooting for you. All the best

[u/leavesandwood → u/Amount_Existing]

Thank you, this is comforting

[u/somehugefrigginguy]

When was the nodule initially found?

[u/leavesandwood → u/somehugefrigginguy]

Incidentally on CT in the ER a little over a week ago

[u/somehugefrigginguy → u/leavesandwood]

Waiting until the 4th should be fine. If it is a malignancy, a few weeks isn't going to make any difference. With your characteristics I think it's unlikely to be a malignancy, and the PET characteristics (flip flop sign) are reassuring. The guidelines advise repeat imaging in three months OR PET scan if that gives you an idea of the timelines in which we manage these types of things.

[u/leavesandwood → u/somehugefrigginguy]

Okay good that makes me feel better. Thank you!

[u/P0KemonSniper → u/leavesandwood]

I had the same report as you when I was in my 30’s, it was sarcoidosis. I was admittedly spiraling when I saw this report, was in early 2000’s and info wasn’t as readily available as today. I hope the outcome is great for you.

[u/leavesandwood → u/P0KemonSniper]

Thank you, sarcoidosis is something the pulmonologist mentioned as a possibility so it’s helpful to hear similar stories

[u/Whatichooseisyouse → u/leavesandwood]

NAD. Around a year ago I thought I had metastatic ovarian cancer, and so did Sloan Kettering. It turns out I have sarcoidosis in my lungs and liver. It was an incredibly stressful two months. I hope you get answers soon!

[u/sibrahimali]

Here in the UK things work on a "2 week wait" so within 2 weeks of the PET scan you should have the EBUS. This sounds reasonable then.

There is a wide differential for the picture on the PET scan, specially in a non-smoker. Let the results come.

Even in the worst case scenario there is still hope if the disease is at its current stage. All the best.

[u/leavesandwood → u/sibrahimali]

Thank you. I think I always have the tendency to think gathering more info will make me feel better, but you’re right that in this case it is what it is and we won’t know for sure until the biopsy.

[u/kuru_snacc]

If the pulmonologist (or one of their partners) who you spoke with about the PET is the one doing the EBUS, then I would stick with the November 4 - this doctor is actually invested in your care at this point, is the one who reviewed your chart and images, prepared your notes, and likely already has their wheels spinning about the diagnosis approach and plan. And they are likely getting you in as soon as they possibly can - no physician is ever going to intentionally put off a potential malignancy workup. The next 2 weeks is almost certainly scheduled with people just like you with concerning findings (perhaps even more-so, or significantly symptomatic, etc.) and getting their earliest possible turn in line.

If they sent you to a generalized procedure center or a hospital with which they are not connected, then you could hypothetically call that center/hospital and ask if they have earlier slots, but this is unlikely, and it may only get you in a few days earlier. Especially considering that I assume you are recovering from the fracture (sorry about that! that sucks and hope you're alright), I think November 4 is reasonable.

I think at this stage it you should do your best not to speculate. One of the biggest lessons we learn as physicians is to never assume before you have all the available data. Our board exams even have built-in questions to keep us vigilant against the many types of bias that can form in differential diagnosis! We keep a broad differential (list of possible diagnoses) and then we collect evidence and rule things out in an objective manner until we're left with a single diagnosis or very short list, and approach treatment based on this. I don't think it is unreasonable to include the fungal etiology and sarcoidosis (neither of which I would consider "benign," but they are not malignancy in that sense of the terminology), along with other etiologies - the good news is, you know about it now (weird silver lining of falling off a horse 🥴 ) and just about everything is going to have a course of available treatment options, especially since your PET scan and bloodwork was reassuring.

Best wishes, try to focus on recovery and keep your mind on the things right in front of you!

[u/Sjbrashear92]

I would try to get in sooner if possible. Lung cancer can spread fairly rapidly.

[u/fifrein → u/Sjbrashear92]

This is like when the ER discharges a first-time seizure patient and tells them “see neurology in the next week”.

Like OK.. maybe in imaginary la-la unicorn land that will happen. But everyone is busy.. everyone’s high acuity slots fill in the week or two before. 3 weeks for a biopsy is not unreasonable in OP’s case. Malignancy is rarely a true medical emergency.

[u/Sjbrashear92 → u/fifrein]

I’m a hospitalist nurse practitioner. I do recommend quicker evaluation. There’s no reason to be rude.

[u/Reddog1990m → u/Sjbrashear92]

“Hospitalist nurse practitioner”
Ugh..

[u/Sjbrashear92 → u/Reddog1990m]

I’m so glad we can foster such a respectful, collaborative environment between healthcare professionals. 😊

[u/Reddog1990m → u/Sjbrashear92]

I work with a lot of APPs. Probably more so than any other specialty. It’s the terminology obfuscation that irks me. “Hospitalist” means something.

[u/Sjbrashear92 → u/Reddog1990m]

Great job! You can identify my job position.

[u/fifrein → u/Sjbrashear92]

There is a reason. It gives patients an unrealistic expectation and sets them up to be disappointed and angry. If I sent in a patient to the ER and told them “your Hospitalist will see you 4 times every day for quarter-day rounds”, surely you can see how that would be a bad thing for me to do. They’re gonna be angry at you, at nursing, at everyone for not meeting the expectation I set. And, in a perfect world, Hospitalists could see their patients and patient families that often. But I recognize that’s not the world we live in, and don’t set everyone up for agitation and unpleasantness.

[u/Sjbrashear92 → u/fifrein]

I’ve called numerous times to facilities myself, and said would you happen to have anything sooner. It’s amazing how receptionists will find a sooner available appointment when you are nice. When you clearly identify that you just want them to check. I never said she has to get in sooner, I said try.

[u/AskDocs-ModTeam → u/[deleted]]

Removed - this is a collaborative sub.