growing nodule and wait to see pulmonologist
I had a CT scan in ER for gastric pain and they found a 9mm nodule in right lung. Got another scan 3 months later and it had grown. Latest scan was read by a radiologist at Duke who specializes in lungs. He reported, " 1.2 cm solid nodule within the lateral segment of the right middle lobe with multiple surrounding satellite nodules. There is also some local fissural nodularity as well." He said it could be sarcoidosis, infection, or malignancy which he said was unlikely. Got a referral to pulmonologist at Duke but initial consult is not for two months. I have rheumatoid arthritis and have been on at least 10 biologics including rituxan. I'm understandably a bit nervous and wondering if waiting 2 months after these scans is normal or should I push them to triage the case and get me in earlier.
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The LONGGGG wait to see specialists or to have tests done is one of the most frustrating parts of this whole thing!!! So sorry you're going through all this!
@happydappy Welcome to May Connect where patients and caregivers meet to support one another. If I had a growing nodule, I would be worried too – but you say you have been treated for sarcoidosis, which often has lung involvement, so perhaps that was factored into their decision when making your appointment.
So, to your question, if they have seen your radiology report and your medical history, there might not be any way to move the appointment up. On the other hand, if you are going in as a new patient and they do not have this info, it would be worth a call to see if they will review it and possibly get you in sooner.
Waiting is so hard – do you have something to distract you while you wait, to make the time pass more quickly?
Thanks for the reply. I have not been treated or DXd with sarcoidosis. I took rituxan for rheumatoid arthritis. But RA can also have lung involvement. They have my records and images in the chart but I only spoke with a scheduler in the Pulmonology Dept who had a referral from my primary care doc. The scheduler is not qualified to triage cases and they just look for next available. Seems like if the nodules are growing, it's an infection, or a malignancy, I shouldn't wait 2 months to get in. I might give them a call but not sure who to talk to.
I have plenty of distractions with work and other things.
@happydappy , One of the biggest frustrations in addressing my dad's cancer and my own is the "serial" nature in which they schedule appointments. One thing has to happen before another, and then they think about it, and then schedule your next, and you repeat the waiting cycle…
There might come a time when you want to get a second (and possibly third) opinion about your case. If you opt for those, they will also start you with the whole new-patient delay thing, and it may be too late (or too far into your first treatment) to get useful information from another institution.
I would recommend trying to make things happen in parallel while you wait:
1) Ask your insurer if they offer any sort of a "Virtual Second Opinion" program from a center of excellence. They can be very efficient about collecting and reviewing records.
2) Consider the other centers of excellence you might like an opinion from. If your primary center is Duke, you might not be too far from Vanderbilt or Emory. They might even be able to see you more quickly than Duke, depending on the backlog.
The only conflict I've experienced with the above was getting pathology slides from one center to the next in a timely manner. If anyone is sending your slides around, make sure you know where they are and what the chain of custody is.
Another advantage to having multiple institutions on board is if you need to get into a clinical trial. I have found that most big institutions don't refer patients to any trials outside their own. There might be a better option for you at another center, and if you're already an established patient there (even from just one consultation), it will eliminate the new-patient paperwork and speed up your access to a follow-on visit.
If you call back, explain that you feel the need for further triage. I'm not sure of the structure at Duke, but most clinics have a triage person or team in each specialty department – for just such situations as this.
Good advice. I actually already have another local pulmonologist booked around the same time as the Duke provider. But going outside to another place like Vandy or Emory for a second opinion is a great idea.
During a LC general screening, a 7mm nodule was found in the RLL. Instructions were to have the CT repeated within a year. The CT done 9 months later, showed it was fast-growing, and spiculated. Then they did a biopsy, and other screening tests. Within the next two weeks I'd had all the other tests done. It was 7 months before the follow-up CT confirmed cancer, but they quickly scheduled the other tests, and within two weeks I was scheduled for a VATS resection which removed it all, and showed clear margins. At five years out no recurrence.
Worse experience I've ever had with anxiety.
Call the pulmonology department again and ask to leave a message for the doctor you are scheduled to see. In the message be sure to say that you are concerned because the nodule is growing. The doctor's nurse will get in touch with you and she can schedule you for an earlier appointment. That's what I would do but if you don't want to do that, ask if the doctor has a wait list and sign up. If there is a cancelation they will contact you. Good luck!
There is a group for people with this and it is helpful to understand the journey. I've had several for about a year and a half. I also have one in my thyroid (biopsy said benign) They (pulmonologist) are following this, mostly looking at their size changes, since they are often benign. I also have a ground glass one, same story. One study mentions the importance of D3 as preventive. On a personal note, this all was unnerving, through the CT, Petscan, etc. but over time, not feeling effects.
Thanks for the reply. I called yesterday and spoke with a triage nurse. She asked some questions and looked at the CT report. She was going to speak with the doctor to see if he wanted to see me earlier and I'm also on a wait list.