Possible Early Stage - 32mm mass in LLL

[Julie_k]

Hello - I hope it is ok to be here as I don't have a diagnosis yet. I have a 32mm mass in my lower left lobe that has been persistent over 3 months. It was mildly avid on the PET scan with no other findings. I'm a 42 year old never smoker, female. It was a shock at first to find out that it is there, but now I am a bit used to it. However, from what I have been reading, it you have ruled out infection and inflammation (which we have), it's likely going to turn into cancer if it's not already, even it's slow growing. I might be wrong about that, but I really want to have surgery to get it out rather than watch and wait for the next 40-50 years. Doc did do a bronchoscopy, but he wasn't able to do a biopsy because there were blood vessels in the way, making it high risk. Everything was normal leading up to and around the mass, however. 

I'm not getting a lot of information from my Dr, unfortunately. I'd like to know why a CT-guided needle biopsy isn't an option, for example, or why they can't test my blood for EFGR just to see. I even went to another guy to ask my many questions, and he was worse, just like, "well, we don't know what it is..."

I wrote in using MyChart to ask if I was eligible for surgery, and the answer was "well, we usually just monitor these, but sure, we'll refer you to surgery." I'm baffled. I'm not in a small town, but I'm wondering if I should seek a clinic elsewhere. I did find a clinical trial in Texas that focuses on suspicious nodules and treats with Keytruda, so I'm considering that because I'm not that interested in waiting for a mass in my lung to act like cancer before we do anything.

I'd appreciate some perspective. Am I over-reacting or having incorrect expectations of my doctor? I know it might be a hamartoma, but it seems like those often have to be removed too, so I might as well go for it while I'm still young-ish and in good health. 

[LilyMir]

I would seek a second opinion at the best cancer centre you can access ASAP. I do not mean to cause alarm but 3.2 cm is a very large nodule and that it is avid on PET is very concerning (how much?). I was unfortunate to have what they told me is a 2.7 cm nodule and they removed the entire lobe. It was adenocarcinoma, I am 49, female, never smoker, and this nodule turned out to have been there at least since 4 years ago, missed by radiology on another incidental scan, when it was much smaller and was left very slowly growing until it reached a mediastinal lymph node too, suddenly placing me stage 3b instead of 1 or 2 (all this was only discovered with pathology as imaging showed much smaller spread).

For lung cancer, when caught early, surgery can be curative but you need a top notch surgeon. If not resectable, they have good treatments too.

Your question about accessing for biopsy by needle is a good one. If you are not getting good answers, find better doctors. "We don't know what it is" is not a good answer. I have never heard of doctors waiting to see what a 3cm+ lung nodule will turn to be but maybe other here have other experiences.

Advocate for yourself strongly. I learned this the hard way. Take care please! 

 

[LouT]

Julie,

Welcome to our forum and I'm sorry you need to be here.  Let's get down to brass tacks.  You need a diagnosis.  If your doctor won't do a biopsy, even a liquid one then you need another doctor.  Another wouldn't/couldn't answer then you need another doctor.  Whatever this is you need a medical team (normally headed by your doctor) that listens to you and responds to your needs.  PET scans are helpful but never definitive.  A biopsy is the only real way to understand what the growth is.  The only thing a surgeon could do is to perform surgery, take a "wedge" of tissue out and test it and to determine if it is malignant and then determine to do a lobectomy or whatever needs to be done.

There is a page here on Lungevity that has a lot of information on Diagnosis and can be found here.  Please keep us updated and ask any other questions you may have.

Lou
PS:  You don't need to smoke to have LC you just need to have lungs.

 

[Julie_k]

Thank you both very much for reading and responding. Lou, I noticed you are from Waxhaw. Are there are doctors in Charlotte you would recommend? 

[LouT]

Julie,

I'll message you privately.

Lou

 

 

[Julie_k]

I wanted to update this topic as a lot has happened. I asked for a referral to surgery and was paired with an excellent surgeon at the Cancer Center. He referred me to a doctor in Pinehurst who is very experienced with robotic bronchoscopy, and that confirmed adenocarcinoma. 

I had surgery last Tuesday, Sep 6th, a left lower lobectomy. Recovery is going well I suppose. It's painful, but I'm breathing better now. The pain has definitely improved since the night of the surgery, which was very bad. I have received one pathology report with more to come. Most of it was very good. The margins are excellent, no lymph nodes involved. The only question mark is that they found focal pleural visceral invasion. I will have to wait until my post op to understand if that means it could be in the fluid of my lung lining or something. We are also still awaiting genetic testing on the mass. So far it is T2N0M0. 

[LouT]

Julie,

I'm glad the surgery went well.  If I knew you were getting the surgery I would have shared some tips and tricks on getting through it well.  But instead I'l share something more general, but equally important.  It was written by one of our members who was diagnosed with Stage 3 & 4 lung cancer 18 years ago and is still very much with us.  It is titled "10 Steps to Surviving Lung Cancer; from a Survivor" and it can be found here.

Please keep us updated and let us know if you have any questions.

Lou

[Tom Galli]

Julie,

Glad to know you are recovering. Also, good to hear that your biopsy is submitted for genetic testing. 

Get a good explanation of the extent of the pleural visceral invasion (PVI) at your post op. They can be tricky. 

Stay the course.

Tom