Lung Ambiguity
 

Hi gang.

I'm getting a lung biopsy Tuesday. I asked for it after my latest CT scan report used the words, "evidence of disease progression in lungs." My oncologist has been insisting all along that it's not at all clear that I even have mets in my lungs. (Right now there's no evidence of disease anywhere else, which is, of course, very good news.) So she said I could stay on Tykerb and Herceptin for awhile, or switch to TDM-1. I asked if we could try for an actual diagnosis, then decide what to do next.

Have you noticed that the people who write the scan reports tend to extemporize? On what basis could he say he sees disease progression when there's never been a diagnosis? At first the hospital didn't want to do the biopsy. Whoever reviewed the initial report said the area in question (in my left lower lobe) doesn't look like cancer and doesn't even look bigger than the last scan. But then they approved it.

I figure if it's benign, then people can quit just making things up when they look at it on scans. If it's something--lung cancer, bc mets, an infection, etc., then it can be treated and hopefully fixed. Two years of ambiguity is enough.

Re: Lung Ambiguity
 

Amy -
We have had "lung ambig" in others here over the years. Sometimes it IS lesions and the treatment keeps it stable. You are smart to PUSH for this biopsy and I sure hope they will get a sample for all the trouble you are going to have that procedure.

I would be curious about the SUV uptake. Is it more, less, the same? That assumes you are getting PET scans.

Re: Lung Ambiguity
 

I have lung mets and I understand they can be very difficult to accurately diagnose. Initially we chose to treat based on there being nothing on ore operative scans, then spots lighting up on PET. I asked for a biopsy after I progressed on my first trial - I needed to know for sure we were treating cancer and not something else like Sarcoidosis. I had an unsuccessful biopsy. I went ahead with cancer treatment and had a response - therefore - 'it must be cancer' but again the nodules behaved strangely. I insisted on another biopsy - this time live ct guided and successful and confirming cancer.
Lung biopsies can be really tricky especially if lesions are small and radiologists seems to disagree all the time. I now request mine to be read by the same radiologist each time - he knows my lungs inside out and I trust him. I recently had three radiologists disagree about progression of disease on TDM 1 trials. I think you are doing the right thing rather than hastily changing treatment.

Re: Lung Ambiguity
 

Are you able to have needle biopsy? We know the disaster than came of my surgical biopsy!
I have had more than one test be "over read" by radiology but interpreted quite differently by a specialist. Ambiguity seems to be a sub speciality in medicine!
Keep the faith

Re: Lung Ambiguity
 

Mine were both needle biopsies. Very tricky with smaller lesions.

Re: Lung Ambiguity
 

Amy,

I sure hope it's negative. Sending you good vibes. (Waiting is always the hardest...)

Re: Lung Ambiguity
 

Thanks for the responses and encouragement!

Steph, I haven't had a PET since last May. On that one, they said they saw multiple new nodules too small to meet the threshold for FDG uptake. My oncologist said it was "not at all clear" that I had had progression in the lungs. Another doctor called it progression. In any event, we changed my treatment at that time because there was increased uptake in other sites, including my spine and a couple of lymph nodes in my chest. (And the original tumor.)

Mandy, I like your idea of having the same radiologist read your results every time. That makes a lot of sense. I will keep that in my tool kit.

It will be a needle biopsy--hopefully successful, meaning, of course, they get a good sample and are able to make a definitive diagnosis.

I'm getting pretty good at not thinking about things over which I have no control, but I'm not perfect at it. Your prayers and good wishes are very much appreciated.

Re: Lung Ambiguity
 

Amy,
First...HAPPY EASTER!!
Next...love the new photo...I still chuckle when I think of us completely missing each other in that little waiting room!
Soooo enjoyed seeing you...and our talk was so enlightening, and truly cleansing to my spirit. I treasure our friendship.

Now...on to the lung issue. I can hear your voice when I read "how about an actual diagnosis"...very Amy...which is to say wise and witty at the same time!

I hope the biopsy isn't too uncomfortable, but I agree with the ladies that it's a great idea. Ambiguity pretty much sucks.

I'll be thinking of you and sending focused prayers your way.
Love you, my friend,
Denise

Re: Lung Ambiguity
 

Denise, my dear friend, I love you too. I'm so glad we got to see each other. Online friendships are awesome, but it's special to sit and talk and share.

I got an A on my museum project! The Penn Museum is, as you said, amazing.

Praying for you, Denise.

Happy Easter.

Re: Lung Ambiguity
 

Amy,

Small lung nodules are difficult to biopsy. I had one lung nodule. 9 mm. On the CT scan there was no question that it was cancer. Spiculated edges. But they weren't sure whether it was lung or breast cancer. A biopsy showed only adenocarcinoma. And both lung and breast cancers are adenocarcinomas. The surgeon erred on the side of breast cancer and performed a wedge resection, rather than a lobectomy. An analysis of the tumor after the surgery showed breast cancer.

I'm sending you good vibes that whatever they're seeing is benign.

Good luck with the biopsy. Spoiler alert: I was lying on my stomach in the CT scanner and after the biopsy I started to cough up blood. A small wet cough. I didn't move and just let the blood drip out of my mouth onto the pillow. This is a common result (although not always), and since I knew in advance I wasn't freaked out. I've heard that patients are often not told upfront.

Joan

Re: Lung Ambiguity
 

I cannot fault you for wanting a definitive diagnosis. Walking in "wonderland" as in " wonder what the heck this is, or isn't?" is too much "unknown" for anyone. Let's hope you get a firm ALL CLEAR!

Re: Lung Ambiguity
 

Thank you all so much for the information and encouragement!

I know biopsies can disappoint. I've had two inconclusive biopsies on my thyroid (and one, on the other side, that is definitely benign.) But this seems worth a shot.

Wonderland is a tough place to live.

Re: Lung Ambiguity
 

Good luck Amy - also keeping my fingers crossed for the B9, all clear!!

all the best
caya

Re: Lung Ambiguity
 

Thinking of you, Amy, and hoping for the best!

Barb A.

Re: Lung Ambiguity
 

Amy,
I will be sending good wishes. You deserve nothing less.
Hugs,
Karen

Re: Lung Ambiguity
 

Hi Amy, I hope you get some conclusive results from Tuesday's procedure, and that it's good news! Sending you hugs and including you in my prayers....
Marie x

Re: Lung Ambiguity
 

Im glad they decided to go ahead with the biopsy, and I certainly hope the results are all clear. Sending prayers

Re: Lung Ambiguity
 

Praying for good results Amy! Keep us posted.

Re: Lung Ambiguity
 

Hello, Friends.

It is so very comforting to read all your notes. Thank you!

I made it through the procedure. It was more painful and uncomfortable than I expected, but there were no complications. I mostly slept from 3 yesterday afternoon to 8:30 this morning. If I do it slowly I can now fill the lung with air without too much pain. They took six samples. I hope that will be enough for a definitive result.

God bless you all.

Re: Lung Ambiguity
 

Amy,
So glad this is behind you! What a relief! I am sorry you had to endure pain on top of it all. Wishing you the all clear.

Karen