Biopsy/Circulating Tumor Cell questions

[LA NYC]

Hi. I’ve been following this site and all of you for some time now and really find you to be such a wonderful community of supportive people. I’ve certainly learned a lot from your stories and admire your strength and care for one another.

I am a 58 year old former smoker, active and fit, although I have been dealing with extreme fatigue for a long time now. I am normally a high energy person, so that’s a bit frustrating.

In March 2021, a 13mm nodule was found (CT scan)in my upper right lung, alongside scarring which was found in both lung apices.

A PET followed and only showed minimal uptake in SUV(1.7) there was also a very small punctuate calcified nodule in left lung that was of no concern. I was told that the nodule was most likely the result of scar tissue and fibroblasts and that I also had mild bronchiolectasis. Plan was to follow up with CT scans and watch.

After a couple of CT scans over the past year, nodule remained “persistent” but did not grow. My doctor offered a blood test that finds circulating tumor proteins and gives a risk assessment on suspicion of malignancy. I went from a pretest probability of about 19% malignancy to a strongly positive test now stating almost 80% chance.

That led me to a Needle biopsy, which I just had yesterday. I won’t get the results until next week, but the radiology asst. was pretty certain it was not cancer. He specializes in these biopsies and was pretty confident.

I would like to know if anyone else has had a similar experience or had a “liquid biopsy” along with CT scans to make your diagnosis. If in fact this nodule is benign, does anyone know why I would have(as my Dr. Reported) a strongly positive amount of CTC’s in my blood? He said I was the first patient who had a positive result since he’s been using this test.

Wishing all a happy weekend and good thoughts and wishes.

 

[Justin1970]

Hi 

Welcome here this is a great community and very supportive to everyone I'm sorry I can't help with any advice on what you are going through bit someone will definitely be along soon goodluck with everything Take care Justin 

[LA NYC]

Hi Justin,

thank you so much for your welcome. I have been following the site and the journey you and others have been on. You have really been through it and are so helpful and supportive to others. You’re all so very strong and special. It’s really a beautiful thing to see. I appreciate your reaching out. 
 Thanks again, 🙂 wishing you good health and a great weekend.

LoriAnna

[Justin1970]

Hi loriAnna 

Thank you for your kind words, I hope you get some really good news next week with your results, I know this is a hard time at the moment but try and stay positive and strong,all the best

Take care Justin x 

[Judy M2]

Hi LoriAnna, glad you found us. Liquid biopsies are gaining a lot in popularity because they are not invasive and can be processed quickly. They are usually used for biomarker testing, and I hope you'll also be getting results from that.

My Stage 3 adenocarcinoma was diagnosed in October 2019 by a PET/CT scan and tissue biopsy that was done by a bronchoscopy, which is the traditional mode of diagnosis. 

If you only have the one cancerous nodule, I'd think it could be removed by surgery. It sounds to me like you should be consulting with a pulmonologist and a thoracic surgeon once you get your liquid biopsy results. 

I know this is a worrisome time but try to stay positive like Justin suggests.

[LA NYC]

Thanks again Justin for the good wishes, after a year and a half of tests and waiting, I’m looking forward to knowing where I stand with all this. Again I appreciate it! 
LA x
 

Judy M2,

thank you as well for your sharing your diagnosis and how you came about it. 

I have been seeing a Pulmonologist from the start and doing a wait and watch on the nodule with my past few scans. 

in June I had the blood test. The Pulmonologist offered that as a less invasive way to determine if there were malignant cells. He specializes in Bronchoscopies but given the location of my nodule I was not a candidate for that procedure. 
He was surprised to find that my bloodwork was found to be “strongly positive” for Circulating Tumor/Protein cells, which led me to the CT guided Fine needle Biopsy yesterday. 
So I am waiting on those (tissue biopsy)results. Maybe I’m jumping the gun, but the radiologist that assisted the biopsy really has me believing this may be benign and scar tissue. But then my question would be why do I have a large amount of CTC’s?
ugh, sorry if I sound confusing. I guess it’s because I AM confused.

I should just be patient and wait for the pathology report. 
 

thanks again for your response and support. I hope all is going well with you!

best,

Lori Anna

[Tom Galli]

Lori,

I wouldn't know why you might have a liquid biopsy reporting positive for circulating tumor protein cells. I do know that liquid biopsies are new technology and results are sometimes not conclusive or accurate. 

Your PET scan showed normal standard uptake value (SUV). Anything at 2.5 or lower is presumed to be not malignant, but PET results can be inaccurate with small nodules and a 13 mm nodule is small. The needle biopsy may be definitive or it could be inclusive. While a 13 mm target is not too small to hit, sometimes small nodules are missed or sometimes not enough cells are recovered to allow a definitive diagnosis.

Your confusion is understandable. There is a new, complicated vocabulary to assimilate in lung cancer. Here is a glossary of common lung cancer terms to help your understanding. Then, of course, our disease can be, often is, life threatening. I wouldn't be at all surprised if fear wasn't part of your feeling equation. I was certainly afraid. Let's hope the biopsy results indicate something other than cancer. Lung nodules form for all sorts of reasons. Here is my go to reference explaining the reasons.

When you get your pathology report, share the results with us if you feel comfortable. This initial report is generated by a pathologist viewing slides of the tissue sample under a microscope. This is called a histology examination. If results do indicate cancer, then ensure you ask the ordering physician to submit your tissue sample for a second examination performed at a laboratory to test for suitability for targeted therapy or immunotherapy. These new treatment methods are game changers in our world. However, some insurance plans do not cover this type of testing when one is diagnosed with Stage I or II lung cancer. Here is information on lung cancer staging. Early stage disease is often treated by surgery or precision radiation. From your PET report, I have every reason to believe you are dealing with a single nodule, not malignant multi-focal disease.

Welcome here. I do hope your visit is a short one, but if lung cancer is indicated; you've found the right place.

Stay the course.

Tom

 

[LA NYC]

Hi Tom,

thanks so very much for your detailed response and wealth of information! 
greatly appreciated. 
I’m aware that my nodule is still small and the PET results were not worrisome. The PET was done in April ‘21, and then it was decided to just follow up with scans to keep an eye out for any changes. 
I didn’t want to have unnecessary surgery to remove the nodule if in fact it turned out to be benign, but in order to relieve any anxiety between scans, my Dr. ordered the blood test, expecting it would most likely turn up negative…but it didn’t. 
I will share the results when I receive them next week. 
I thank you and the others for your very helpful insights and responses and wish for all of you to stay on a healthy course!

best,

Lori

[LouT]

Lori,

You've got some great feedback and information so far so I'll just welcome you to the site and let you know that if the nodule is found to be positive then we have much we can share with you.  If it is a positive biopsy it is in your best interests to educate yourself to the highest degree possible.  We'll be there to answer questions from our own experience and also to point you to some of the great information we have available on the website.  Keep us updated and we are all hoping for a negative result.

Lou

[LA NYC]

Thanks so much Lou! You guys are truly awesome! Looking back at the report, I’m seeing that the nodule is actually 1.6cm diameter. I originally said 1.3. Not that I think that makes much difference. I know it’s still small enough that I can possibly have surgery to remove if need be.

Happy to meet all of you who are so truly caring and helpful. 
 

Thanks again and will follow back up when I get results this coming week!

all the best,

Lori

[LA NYC]

Hi All, 

I haven’t spoken to my Pulmonologist yet, that will happen tomorrow morning. 
I did get results posted in MYChart and there’s NO diagnosis. 😐

frustrating to say the least.

The short report says the samples were inadequate. 
Was hoping for definitive answers but still don’t have them. 
this is all I’ve got for now. (The blank ink is to leave out Dr. names. 

My best to all of you. Thanks again for your thoughts/support. 
Lori

 

[Justin1970]

Hi Lori

Goodluck tomorrow with the pulmonologist I really hope you get some definitive and good news, I know how hard it is waiting but hang in there all the best 

Take care Justin x 

[LA NYC]

Thank you so much Justin!! Hope so too! And hope you’re in a good healthy place right now!

my best to you too!

Lori☺️x

[Justin1970]

Hi Lori 

Fingers crossed everything will be good tomorrow ,I'm having a few problems but I'm going to ring the cancer department tomorrow and see if they have any answers for me

take care Justin x 

[LA NYC]

Oh Justin, I’m sorry you’re having problems. I will be crossing fingers, toes, all of it, in hopes that you can get answers and help. Will be thinking of you with healing wishes!

best of luck and take care,

Lori

[LouT]

Lori,

Sometimes CT Guided Scans are still not good enough to get a good biopsy specimen.  From what you posted I failed to see that any of the specimens yielded a "usable biopsy sample".  Please tell us if your Pulmonologist looks to another avenue to get a diagnosis.

Lou

[LA NYC]

Hi Lou, 

thanks, yeah, pretty disappointing that they couldn’t get anything from 3 samples. 
Not what I expected.

I talk to my Dr. early in the am tomorrow. Will soon see what’s next and share. 
thanks so much for checking in.

best,

Lori

[LA NYC]

Hi all,

spoke to my Pulmomologist yesterday. He too was surprised that my biopsy was non-diagnostic.

He said my options now would to either

1. Have a surgical biopsy whereas it would be definitive and if malignant, most likely stage 1 and I could get it all out.

2. He thinks now after viewing the radiology pics that he would be able to reach it with a Bronchoscopy.

or

3. Wait and watch if there’s any growth with CT scans. He really doesn’t recommend that though because of my strongly positive circulating tumor cells.

I am thinking I will do the Bronchoscopy. I really don’t want to go through a surgical procedure if this turns out to be a benign finding.

I looked up the procedure on YouTube and noticed there was a medical center that did robotic bronchoscopes. Has anyone had that procedure? I do prefer to stay with my Dr. And he’s at a top NYC hospital, but this robotic one seems to be very precise. Guess I’m a bit wary after having a failed FNA biopsy.

Thanks as always,

Lori

[Tom Galli]

Lori,

I've had 8 bronchoscopy procedures in my treatment history. The first was a flexible instrument to obtain a sample for biopsy. This, like your needle biopsy, was a failed procedure. My second bronchoscopy was a rigid type. The distinction--a rigid instrument requires general anesthesia while a flexible instrument does not. The second procedure did obtain a tissue sample for a biopsy. Concurrent with that procedure, my thoracic surgeon made an incision at the base of my throat and used a flexible bronchoscope to examine and sample lymph nodes in my chest. These diagnostic procedures were all directed by a doctor.

The remaining six bronchoscopy procedures were to emplace and remove tracheal stents that were used to bolster a weak area in my repaired bronchus stump after my thoracotomy. 

To my knowledge, none of these procedures were done in a robotic fashion. My diagnostic biopsies required a lot of poking around and repositioning the instrument. The stent insertion also required a lot of precision and all were performed by my thoracic surgeon. I've never had a robotic biopsy but the non robotic procedures are relatively easy in terms of post procedure recovery. I had a minor sore throat for a couple of days; no incisions to heal and minimal anesthesia side-effects.

I stayed with my doctor (thoracic surgeon) because my anatomy was significantly altered by the thoracotomy and 2 subsequent thoracotomy procedures to repair a fistula. He knew how my anatomy was "re-wired" and that made him the best choice, in my opinion.

A bronchoscopy is a minimally invasive procedure and I do hope it secures a sample to provide a definitive diagnosis for you.

Stay the course.

Tom

[Justin1970]

Lori

Goodluck with whatever you decide but I think I would go for the bronchoscopy aswell definitely best to find out what's going on sooner 

Take care Justin x 

[LA NYC]

Tom, 

wow!! 8 Bronchoscopies! I’m so sorry for all you’ve been through with them. You’re certainly the authority on everything Bronchoscopy.

I do hope that’s the end of those procedures for you, and am happy to hear you have a trustedThoracic Surgeon to get you through it all with minimal side effects. 
 

After talking with Pulmonolgist and a couple of friends who are cancer survivors, I decided to go with VATS surgery. I realize it’s best to just get it out now while it’s small and not risk another procedure that may be inconclusive. 
 

I am meeting with the Surgeon on Wednesday to discuss and plan for the surgery. 
 

thanks so very much for all the detailed information. So very helpful.

Take care,

Lori

[LA NYC]

Justin,

thanks so much, as always, for the good wishes and support. 

How did your talk with your doctor go?

I hope you’re doing ok and am sending good health wishes to you!

best, ☺️

Lori

[walfredo2001]

3 hours ago, LA NYC said:

Tom, 

wow!! 8 Bronchoscopies! I’m so sorry for all you’ve been through with them. You’re certainly the authority on everything Bronchoscopy.

I do hope that’s the end of those procedures for you, and am happy to hear you have a trustedThoracic Surgeon to get you through it all with minimal side effects. 
 

After talking with Pulmonolgist and a couple of friends who are cancer survivors, I decided to go with VATS surgery. I realize it’s best to just get it out now while it’s small and not risk another procedure that may be inconclusive. 
 

I am meeting with the Surgeon on Wednesday to discuss and plan for the surgery. 
 

thanks so very much for all the detailed information. So very helpful.

Take care,

Lori

Lori,

 

I had 2 bronchoscopy’s, the first flexible, and the second a rigid one with laser ablation.  The first was non diagnostic, and the second eventually was diagnostic but took 6 weeks for them to reach a diagnosis from the larger sample taken, after outsourcing to Mayo…. The end result was needing VATS surgery, after 8+ awful weeks of stress starting with the first bronchoscopy.  Once the PET was done early on and showed high uptake, I wish the very next step was surgery for me, and hate that I wasn’t given that option at the time.  If it’s hard for them to figure out what kind of cancer it is, spend as much time as you’d like figuring out what the stuff is after its out of my body… start by getting it out of my body.  Just my .02 cents

[LouT]

Lori,

I went through CT Scans, a failed CT Guided biopsy, PET Scan and none of them produced a solid result (negative or positive for cancer).  At the end of the day they used the surgical approach and confirmed a NSC Squamos tumor.  I had a lower-right lobectomy (VATS) on May 2 2019...and have been NED since.  This coming Monday is my first annual scan (all others were either 3 or 6 month scans) and my hope is for NED to continue.  

The diagnostic process can be long, frustrating and even scary, but we needed to know what we are dealing with so we can be treated.  You've heard from a number of folks and your decision to do the VATS is a wise one.  I had written a blog called "Thoracic Surgery Tips and Tricks"  to help you prepare for, get through and recover from this (thoracic) surgery and it can be found here.  Best case for the procedure the finding is negative so they close you up, worst case they get that darned thing out of your body.  

Stay strong and please keep us updated.  You know we'll all be pulling for you.

Lou

[LA NYC]

Walfredo,

thanks you for telling me of your experience and giving me your thoughts. After hearing of yours and others non diagnostic bronchoscopies,I believe now I’m making the right decision. When my Pulmonologist said he “thinks” he can reach it with bronchoscope, it didn’t leave me feeling confident about going through another procedure that may fail. Like you said, it would just be stressful waiting for the next thing.

what did you eventually have done to make your diagnosis? And how are you doing now? I do hope that you’re feeling much better and wishing you the best. Again, thank you. Yours and others stories have been so helpful.

take good care,

Lori