Hello

[Alipote]

So here I am in a club I don’t want to join, but I will embrace it all the same. I did not want to be a grateful recovering alcoholic either and that saved my life so what the hell, right?

My journey started in October when a nodule was seen on an X-ray when I went in for pnuemonia and a CT scan was recommended. Next step was to scan again at 3 months. Nodule was still there and grew from 2.3 to 2.4 cm. I was offered to follow up in 3 months or get it biopsied. Having a strong family history and being an active smoker, I choose the biopsy. 
Diagnosis is adenocarcinoma in the right upper lobe.

That was February 24th. Since then I had an EBUS done. No malignant cells from the lymph notes. MRI without evidence of metastasis in the brain. All good news yes? 
 

PET scan was a little confusing. There were 2 areas in the other lung that were reactive. Had biopsies scheduled but when I was scanned the radiologist found nothing to biopsy. I am scheduled for yet another scan (CT) on April 22nd. 
 

I am trying to be patient and let the experts do what they do. I have not been referred to an oncologist. I work in health care (critical care RN) and hand picked my surgeon and pulmonologist. I am coming up on 2 month since diagnosis and I feel like the waiting is difficult. I was pumped to get in and get the lobectomy knocked out. I’m ready to do the work to recover from surgery so I’m ready for the next hurdle. All this waiting has been an emotional up and down. 
 

So that is my story of how and why I’m here. When should I start to push my team more aggressively to get things rolling? 
 

thanks in advance for any responses/advice/support

[Karen_L]

Welcome to the club of unfortunates. The discovery of my cancer happened exactly like yours. 

It's amazing that they found nothing to biopsy, in either the EBUS or the other!  And so great.

I've learned, through my own experience, that areas that light up on the PET scan can be inflammation and not necessarily cancer. 

I am being treated at a cancer center where care is integrated. Thus, I did not need to do a lot of advocating. Actually, I didn't do any. Scheduling for tests happened in the background and I would receive calls telling me when to show up and where and if the time was good for me. I was put with one of the lung oncologists. 

My path after my mass--4.5 cm-- was discovered was to meet with a surgeon. She oversaw all my testing, from CT, PET, and MRI through EBUS. I had the mass plus nodes that were unresectable. My case then went to the institution's tumor board, who recommended chemo & radiation, followed by immunology (per the Pacific study).  It was at that point that the surgeon handed me off to an oncologist. My oncologist works hand in hand with my onc-radiologist. When needed, my pulmonologist weighs in.

My point is that, in my institution, an oncologist deals with a case that is initially not appropriate for surgery. 

It was three months from discovery of my mass in mid-January to the start of treatment on April 1. It's so important to wait, and yet that's the hardest thing about getting started on this path-- there is so much waiting at the beginning!

That said, has the 2.4 cm. nodule been biopsied?  If they did biopsy it, did they send tissue off for genetic study and identification of biomarkers? Do you have the pathology reports? Those biomarkers will be important in identifying possible treatment paths.

You're 10 days away from your next scan, which will give you and doctors more information. Will it be a CT with contrast? (I joke that my goal is to spontaneously glow as a result of all the testing I've had. I go in for my third-- or fourth?-- MRI of the brain next month.) That contrast part is important for getting a clear picture-- no pun intended. 

 If you feel concerned, it is always important to address that. I'm sure I was a pain in the surgeon's back side when the nurse navigator was not effective for me and I contacted the surgeon directly. As one of my sayings goes, too bad, so sad. (I am a big chicken when it comes to questioning my docs, so that saying is mostly bravado. 😉. It sounds like your questions might be, what is the surgeon thinking, in your case? Why haven't they referred you to an oncologist? What exactly are the protocols the surgeon is following? 

I see that you're in a big city. If you don't want to wait for the next set of scans, you might want to seek a second opinion. Do you have options for treatment in a cancer center there, in particular, with a lung cancer specialist? Our field is growing so fast and there is so much information to keep up on that a lung cancer specialist is the ideal. And, second opinions are valuable parts of the treatment process for folks with lung cancer. 

That's a lot of stuff to think about. I hope some of it helps you determine what you want to do next.

Good luck-- you'll get through this.  

Karen