Jump to content

Possible Early Stage - 32mm mass in LLL


Recommended Posts

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. 

Link to comment
Share on other sites

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! 

 

Link to comment
Share on other sites

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.

 

Link to comment
Share on other sites

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? 

Link to comment
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Restore formatting

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

×
×
  • Create New...

Important Information

By using this site, you agree to our Terms of Use.