Scared, Frustrated with not being able to make dr appt. need advice

hi @dgulovsen - sorry to hear you're dealing with lung nodules. A general rule of thumb is when nodules are smaller than 1cm, they can be difficult to biopsy, so often doctors will watch and wait. That said, I would also want an increasing nodule checked asap.

Is this the place you're trying to reach?
https://www.ynhh.org/smilow/services/thoracic-oncology/lung-cancer-screening-program
I recommend calling the main appointment line for the cancer center directly - and telling them you would like to see a pulmonologist or thoracic oncologist. And see if you can get an appointment faster that way.

Let us know how it goes - hang in there!

Welcome to Mayo Connect @dgulovsen, First try to focus on what you know, and not what your mind wants to race ahead to. I know that's not easy, but it will help to manage the waiting. Waiting for appointments, waiting for test results, waiting for even more appointments, etc. I am not a doctor or clinician. I do have lung cancer, and I have a non-cancerous 1 cm lung nodule that just won't go away.
Different types of scanners may pick up different details. From another post, it sounds like your first scan may not have been a CT. The two sets of images may be difficult to compare. Also, there is still a human reviewing the images and writing the report. A 2mm difference may be a difference in the radiologists' interpretation or the angle of the image.
When a doctor recommends a biopsy, they want to be sure they can pinpoint the exact area of the nodule. The last thing they want is an inconclusive biopsy result. As @mamajite mentioned, this is why many pulmonologists will often wait until a nodule is at least 1cm before performing a biopsy. They also don't want to put you through the procedure if the nodule may reduce on its own. Waiting isn't always a bad thing, some like to call it 'active surveillance', so we can feel a little better about it.

Did your pulmonologist order the CT? Have you spoken with that office for their recommended next steps? It may help to have them call in a referral to Yale if that is where you want to continue your care.

Good morning. My experience, in short, was CT scan for lung screening, found 22mm nodule that had been previously found at 8mm 9years earlier. (Was never told it was found- that’s another story). My PCP then ordered a PET scan. From there, a pulmonologist visit, who strongly suggested surgery to remove it. Had a breathing function test, then a EBUS to get some lymph fluids and cells to check. Did not have a biopsy. Met with Thoracic Surgeon, went over options. Chose surgery rather than radiation as surgery was the better choice to remove it all. I only had the one- no metastasis. Started with the lung CT on January 5th of 2023, had the surgery on March 24th of 2023. It seemed to take forever after the CT but then turned into a flurry of appointments and then it was done. I am 2 years clear now.
Take this time to relax and just think of things you may need to do for different scenarios. Such as, if you do have a surgery, will you have a support system? Will you have someone with you to help you after the surgery? Cooking, cleaning, shopping, staying with you for at least a few days to a week? If you have pets, someone to help with caring for them? When you start doing all of that, it will help the time go by, but it also helps you to take control and instead of sitting in fear, you are taking action to be prepared and you will go into it with a more positive state of mind. And… WALK, WALK, WALK! It builds your lungs and makes them stronger. Notice all the Beautiful things around you,
Good Luck to you! I will say a prayer for your health! ❤️🙏

Forgot to mention they did biopsy at surgery and I had adenocarcinoma and was stage 1b. Driven by KRAS gene.

I believe it was the lung nodule clinic. Its all part of Smilow. There is no answer. You have to leave your name and then they return the call-but it isn't the front desk its another answering service that tries to contact them.

Thank you for the reply. The hardest part is no one is speaking to me. I wasn't supposed to be seeing my Pulmonologist for 6 weeks, but then the scan was done the following week that she ordered it. I called the office and they got me in earlier, but still sitting here for 2 weeks with no communication. I will be seeing her on Friday. I have no idea what will happen next. Bronchoscopy? Or wait, or pet scan?
I am happy. that you have had no reoccurrence. May I ask if you had a wedge resection of section? And how disabled are you after the surgery? You mention needing a good support system?

Hello, Thank you for the reply. I haven't spoken yet with my Pulmonologist. She ordered ct scan and then I had an appointment to see her in 6 weeks. But the scan was done the following week and so I have all of the imaging and reports and no one to discuss it with. I called and they got me in earlier but that isn't until Friday so 2 weeks of freaking out. This is why I reached out here. What worries me is the waiting until it grows to 1cm and then will might involve my lymph nodes. If it is contained, I'd like to have it removed before it could spread and becomes an entirely different animal to treat.

I would like my pulmonologist to give me a referral to Yale, since they are one of two places that perform robotic assisted bronchoscopies. But I believe the referral needs to come from a pcp not pulmonologist which is confusing. My pcp doesn't know anything because I have't talked to the pulmonologist yet.

I am hoping that the original scan which my pulmonologist said she could barely make out the ground glass might not be accurate and maybe it was larger to begin with rather than actively and quickly growing. I can say that I may but am not certain that I was raised in a home with asbestos popcorn ceilings.

Hi Thank you. I had a segmentectomy of Upper left lung. I am fine now. I am not disabled at all from the surgery or otherwise, Thank Jesus!
I do still get a nerve pain where my bra band rides on my incisions, but nothing I can’t tolerate or need any kind of pain reliever for. I was walking in the hospital as soon as they would let me out of the bed. It’s SO IMPORTANT to walk as much as you can. I can walk 5 mikes or more a day I can even jog (not interested in that really but I have done it) I go up and down the stair case in my house at least 6 times a day and I garden, bike ride, etc. After I got home from the hospital I was a little tired and by doctor’s orders not to lift anything heavier than a gallon of milk for a couple weeks. (I also had breast implants removed during the same surgery so I was under the knife for about 5 hours). I am 61 now and I feel great. I hope this helps. I know the before is scary and not having a plan going yet, but during this time, if at all possible, walk as much as you can. Do slow stretching, breathing exercises, etc. If you do that beforehand it will help in your healing journey afterward. It will be habit by then and easier to get back to.🙏❤️🙏❤️🙏🙏🙏

Support system of family or friends that will be available to be with you or help you. At least the first few days after you return home. (If you have to have surgery).

Oh @dgulovsen, Your frustration comes through in your writing, and I feel for you. Not knowing and not getting answers to our questions is so hard. I would recommend writing out your questions, so you don't forget anything during the appointment, and sometimes, making a list like that can help to not go over and over the list in our heads. Once it's on paper or in the notes app on my phone, it can stop swirling in around my brain. It's great that the office was able to move up the pulmonology appointment. Do they offer a waitlist in case there is a cancellation? Each step in the diagnosis process takes time. My lung cancer diagnosis took 2 months from my first abnormal x-ray to my first treatment, and I was symptomatic. Hoping that you are able to get the appointments and the referral that you're seeking. Hugs.