Lung Biopsy...what to expect?

jml · 04-05-2011, 11:30 AM

Hi Friends~
I've been away from "the boards" for a number of months now, though have been checking in the past week to catch up and see how everyone's doing.
Regardless of when or why I log in, I'm always inspired and encouraged by all of you. I'm so grateful to know you guys are all just a click away.

I'm scheduled for a lung biopsy on Friday and just don't know what to expect. As a salty, ~9yr Stage IV'er, who's been through just about everything, I find myself in unusual territory...
I did have a CT guided liver biopsy back when I was dx'd in 2002. That was no fun - the radiologist made three "passes" with the needle and that was about all I could tolerate.

The results of this biopsy will determine whether or not I can resume my TDM1 treatments that have done such a beautiful job cleaning up the disease in the nodes in/around my belly & liver or switch to something new again. But these lung nodules are really throwing things off.
I have a history of lung nodules popping up & resolving, and when everything else in my body is responding to treatment, the lung nodules still behave erratically.
My doctor's @Emory don't get alarmed as they know that's just the way it goes for me, however the study docs for TDM1 are adamant about finding out if it's true disease progression or some other thing.
So after a CT scan, PET scan and another CT scan in <30 days, now they want me to see a Pulmonologist and have a lung biopsy. Even prior to my liver resection in '05, the surgeon suggested we get the lung nodules biopsied "to find out once and for wall what they are..." but even then we didn't pursue it.
The good news is I've been off TDM1 for ~7weeks now, completely off treatment including Vitamin H, and the CT's show that nothing's started to grow again.

I know I can't avoid it, and I know that this is another hoop I have to jump through to get back on track with my treatment, but I can feel the anxiety creeping up.
I just talked to the IR folks & they said that I'll be in recovery for 4-6 hours...? Seems like a long time.
Any exeperiences, words of wisdom & encouragement are greatly appreciated.

Keep the Faith~

Jessica

Barbara H. · 04-05-2011, 12:50 PM

Hi Jessica,
It's not pleasant, but doable. I teach and only missed a weak of school. I turned out to have lung inflammation and eventually had to go off the TDM-1 trial. I went on Tykerb/Herceptin in October 2009, and it is still continuing to work.
Best wishes,
Barbara H.

Lien · 04-05-2011, 03:39 PM

I know of at least 4 people who had nodules that looked like mets, but turned out to be harmless. It's very hard to tell the difference on a scan. I guess that's why they want to do the biopsy.

Hope it's doable for you. Sending you calming vibes & a hug.

Jacqueline

BonnieR · 04-05-2011, 04:54 PM

A year ago I lighted up some scans and the only way to diagnose was a biopsy. The location was such that I had to have a surgical proceedure in hospital. The area could not be reached by needle. Unfortunatly for me, the frozen section was MISdiagnosed as lung cancer so they removed a lobe of my lung on the spot. Later it was determined that I only had old pneumonia that was causing the alarming scans.
Anyhow, that is my tale of woe. Had it gone correctly, I would have been discharged a few hours later. Instead I ended up in hospital with chest tubes for a few days.
Are you having a needle biopsy or a surgical one?
My story is not the norm! So keep the faith!

Ceesun · 04-05-2011, 06:00 PM

I, too, wondered if you are having a needle biopsy or a surgical one? I have had two needle biopsies of the lung done and quite honestly they were not bad at all. They gave me something to relax and I really did not feel a thing. They kept me for about one hour and did a follow-up xray to be certain the lung did not collapse and I was out the door. I was told no heavy lifting and to take it easy the remainder of the day and that was the extent of it. I wish you good luck. Ceesun

flynny · 04-05-2011, 07:54 PM

Sending you lots of hugs to get you through this time!

Joan M · 04-05-2011, 08:51 PM

Jessica,

Glad to hear that you're doing well.

I had a needle biopsy of my lung which was not bad. I was on my stomach and the biopsy was done through my back.

Spoiler alert: Potential for collapsed lung, which I didn't have. Potential to cough up blood, which happened to me. But it wasn't bad because I was warned and therefore knew in advance what to expect. Just a little tickle and a slight cough. I just let it drip onto the sheet in order not to move during the procedure.

The interventional radiologist was great. He told me what he was doing step-by-step, which I appreciated. No surprises.

After the procedure I was in the hospital for four hours and given a few x-rays to determine whether my lung collapsed.

Good luck!

Joan

Jean · 04-06-2011, 08:58 PM

Jessica,
I cannot tell you what to expect but I wanted to send my best wishes to you. Please let us know how you
are.....

Kind Regards,
Jean

Jackie07 · 04-06-2011, 09:19 PM

Jessica,

Here's a link to the subject:

http://www.webmd.com/lung/lung-biopsy

Sending you good thoughts on a benign result and getting back to your treatment soon.

Ellie F · 04-07-2011, 09:09 AM

Hi Jessica
Just wanted to say how happy I am to hear you are doing so well.
Hope the procedure goes well. Please let us know how you do.
Ellie

tricia keegan · 04-07-2011, 02:17 PM

Sending good wishes Jessica! x

jml · 04-08-2011, 01:38 PM

Thank you everyone for your feedback & well-wishes

There's been a small change in plans - instead of a CT guided needle biopsy of the lung nodules, the Pulmonologist I met with is
suggesting we do the biopsy via bronchoscope. He says it's less invasive & lower risk of SE's and it'll give him (rather, the Interventional Pulmonologist) a chance to look around and a couple of other areas that are looking curious, like the lower R lobe where there's atelactasis and wherever it is that they see "a touch of pneumonia or pneumonitis."
One of my concerns is that this new Pulmonologist is with a different hospital system than where I've been getting my care for the past 8 years and is ~25 miles away. I just don't want any more delays in my treatment, waiting for the biopsy results to come back and deciding what/when I can resume or change treatment.
I've been off all treatment, including Vitamin H for 7 weeks now, and according to the study coordinator, if all goes as planned and I do switch to the other study, I won't start the new regimen until ~4/25.
And I've noticed that my bp has been a touch lower than normal for the past few weeks (90/55 today vs 108/76) and my resting heart rate is higher - high 80's when I wake up & 90's-100 when I'm up and about, so I'm concerned about my heart & cardiac output. I'm super lethargic and get unusually SOB carrying groceries, walking any distance/up stairs & hills. Any thoughts?
I've mentioned this to everyone, but no one seems terribly concerned. It bugs the crap out of me bc I'm not able to be active, even walking my dog to the park or participating in any of the classes I teach.

Thanks again everyone, for being part of my world.
Keep the Faith~
Jessica

Lien · 04-08-2011, 04:08 PM

Dear Jessica,

It sounds as if you have pneumonia. It would explain the abnormalities on the scans and the symptoms you describe. I know at least 3 others who turned out to have nothing more alarming than a low grade case of pneumonia.
A friend had the open biopsy, which fortunately was b9, but it took her a very long time to recover from the surgery. I think it would be better to get a very good pulmonologist than hurry up the process or travel less far. If you trust the doc and if you have time to drive there, I think that would be your best option. I don't think waiting a bit longer would make much difference. However, I'm not a doctor, so perhaps you should discuss this dilemma with a doctore you trust.

Hope this helps a little. I know it's hard playing the waiting game.

Hugs

Jacqueline

Just my 2 cts.

Barbara H. · 04-08-2011, 05:25 PM

Hi Jessica,
It could very well be pneumonitis. It is a rare side effect of TDM-1 that happened to me. It was confirmed with a surgical lung biopsy. I was put out and had to stay overnight. I did not immediately go off the drug. However, they watched my scans and eventually after a year I had to stop that treatment. Make sure that you have a good surgeon if you have to go that route.
I wish all the best for you.
Barbara H.

schoolteacher · 04-11-2011, 01:27 PM

Jessica,

Glad to hear from you. I had a needle biopsy February 2010. It wasn't bad. When my markers and CT scans started to light up in June and July, it was assumed that I had cancer in my lungs. He did not want to biopsy in August. Nothing had shown up in February.

I have been doing the EMILIE trial since September. I am on the Tykerb Xeloda arm. I am glad to hear your good results on TDM1.

I get my treatment at Kennestone in Marietta. I may ask the doctor to see if I could have the type of biopsy that you were recommended to have. Which hospital did they recommend?

Please let me know how the biopsy goes. Hope to hear from you soon.

Thanks for posting.

Amelia