Thoughts on these CT Findings

[walfredo2001]

 

Hi- I'm new to this gruop, and would love to hear someones opinions on the below CT scan report from the radiologist.  

I have a bronchoscope scheduled for Friday and Pulminologist said she would have results for me, likely late next week.

41 year old non-smoker male.  

 

CT CHEST WITHOUT CONTRAST dated 4/20/2022 9:07 AM

CLINICAL HISTORY: Cough, persistent.

COMPARISON: Chest x-ray 3/29/2022.

PROCEDURE COMMENTS: CT of the chest was performed without IV contrast. This
examination was performed with automated exposure control to minimize patient
radiation exposure.

FINDINGS:

Lungs: The right lower lobar bronchus, at the level of the superior segmental
bronchus, contains an endobronchial lesion with subsequent peripheral mucous
plugging and basal segmental atelectasis. Small regions of tree-in-bud
inflammatory infiltrate are also seen through the superior segment of the right
lower lobe.

Posterior left lower lobe pulmonary nodule, 3 mm, series 3 image 78. No other
pulmonary nodules, focal airspace consolidations or masses. No pleural effusions
or pneumothorax. The central airways are patent.

Lymph nodes: Noncontrast technique limits evaluation for hilar lymphadenopathy.
Within these constraints, no supraclavicular, axillary, mediastinal, or hilar
lymphadenopathy is identified.

Mediastinum: The heart size is within normal limits. No pericardial effusion.
Small air-fluid level in the distal thoracic esophagus.

Chest wall and spine: No acute osseous abnormality.

Upper abdomen: The upper abdominal viscera are unremarkable.

IMPRESSION:
1. The right lower lobar bronchus is occluded by an endobronchial lesion.
Further evaluation with endobronchial/bronchoscopic tissue sampling is advised.
The age of the patient and the endobronchial location raises the possibility of
pulmonary carcinoid.

2. The right lower lobe basal segments demonstrate atelectasis with scattered
tree-in-bud inflammatory infiltrates through the superior segment of the right
lower lobe.

3. No definite lymphadenopathy of the chest.

4. The small, 3 mm, left lower lobe pulmonary nodule should remain under
longer-term follow-up. To be based upon the patient's subsequent oncological
profile.

[Tom Galli]

Walfredo,

Welcome here.

I'm certainly not a doctor but the operative words in the CT report are in paragraph 1 of the Impression: "pulmonary carcinoid." Here is an explanation of what a pulmonary carcinoid is. So you have a tumor (lesion) in the right lower lobar bronchus. Is it metastatic lung cancer? The radiologist suggests your age and location of the lesion raises that possibility but it remains a possibility until a biopsy is performed.

Unfortunately, for more information, you'll need to wait for the results of your bronchoscopy. I hope it is something other than lung cancer.

Stay the course.

Tom

[walfredo2001]

Thank you Tom!

I know I'm reading tea leaves at this point, and mid-late next week I'm supposed to have a diagnosis, so it's almost certainly not worth the effort/stress... but wanted to get some feedback other then from the google... and have been really impressed with some of the other threads and the feedback I've read through today.

I had my consult with the pulminologist this morning and left with a few pretty strong curiosities at this point...

how does a radioligist suspect something that rare (Lung carcinoid) over something that is 20X or so more common (NSCLC)? 

Do initial CT scans of chest, lymph nodes etc - have a relatively good track record of being predictive of finding spread as well as locating the primary tumor, or not really and the PET scan later often finds significant spreading the CT doesn't show in regards to lymph node or other distant areas?

Thanks so much again, it is extremely appreciated!

[Tom Galli]

Walfredo,

Do initial CT scans have a relatively good track record of predicting lung cancer or finding a primary tumor? I certainly can't offer a definitive answer. In cases like my initial diagnosis with a very large tumor blocking my main stem bronchus, then yes. There is also ambiguity with the PET scan. Here is my explanation on PET findings. Unfortunately, the only definitive way to make a positive lung cancer diagnosis is with a tissue biopsy. The pathologist looks at the tissue sample under a microscope (histology exam) and notes the characteristic shape and size of lung cancer cells. Then, for most folks these days, the sample is sent for further laboratory biomarker testing. 

Primary tumors sometimes are hard to find but if your biopsy shows non small cell, small cell or large cell lung cancer, you should undergo treatment.

I wouldn't know how your radiologist determined your rare lesion (lung carcinoid). I know all this is unsettling; I've been down the "scanziety" path many times in my treatment history. One does not cope but hope springs eternal.

Stay the course.

Tom

[walfredo2001]

Tom,

Thank you!  For the bio marker testing- is this something I should explicitly request from pulmonologist prior to bronchoscope tomorrow?

 

[Judy M2]

Biomarker testing ought to be standard practice, but you should confirm that they will be sending tissue samples for both biopsy and biomarker testing. Good luck with your procedure. 

[walfredo2001]

 

Results came back late today from bronchoscopy... though they are negative (yeah!) they are also very "bland" according to my pulmonologist and require more study.  She has requested a PET scan to be done asap... This roller coaster ride is absolutely insane... and I have this terrible suspicion I can't shake, that it is only getting started.

Does anyone have any insight or thoughts on the pathology report, or of bronchoscopys missing stuff found on PET scans?

 

Collected Date: 4/29/2022 14:21 PDT Case Number: SM-22-0001416
Surgical Pathology Report
DIAGNOSIS
Diagnosis After Microscopic Examination:
Lung mass, right lower lobe, biopsies:
- Fragments of benign fibrotic/sclerotic tissue with patchy areas of calcification.
- AFB and GMS stains negative for acid fast and fungal organisms .
- Negative for malignancy.
- See comment.
05/03/2022 15:14 
MJC/JKH (Electronic Signature)
.
.
Review
Dr. D. Glidden has reviewed this case and concurs with the diagnosis.
Comments
The submitted material consists of nodular fragments of densely fibrotic/sclerotic tissue,
which
have patchy areas of calcification. There is no overt cytologic atypia within the submitted
material and no immunohistochemical evidence of malignancy.
However, sampling issues must be considered, especially on small biopsy specimens, as an
underlying lesion or process may not be represented within the submitted material. If
high clinical suspicion exists, submission of additional materials is recommended. Clinical
correlation required. See pathology report CP-22-1521 for complete cytology evaluation.
Immunohistochemistry
The following immunohistochemical and special stains were performed with adequate controls.
Pooled cytokeratin staining highlights the rare benign bronchial epithelial cells and shows
nonspecific staining within scattered histiocytes. CD68 staining highlights the admixed
histiocytes within the fibrotic regions. Cytokeratin 7 and TTF1 stains highlight the benign
bronchial elements. These elements also show small subset positivity with CK5/6 and p63.
Synaptophysin and chromogranin staining is negative. There is no immunohistochemical evidence
of malignancy within the submitted material. AFP and GMS stains are negative for acid fast and
fungal organisms. Congo red staining is performed and is negative for amyloid deposition.
(Analyte specific reagents are used in many laboratory tests necessary for standard medical
care and generally do not require FDA approval. This test was developed, and its performance
characteristics determined by Legacy Laboratories. It has not been cleared or approved by the
U.S. Food and Drug Administration.)

[Tom Galli]

Walfredo,

I think the most important words on your report are "negative for malignancy". The disclaimer-like words added with Dr. Glidden's review don't add anything concerning to me. Of course, the biopsy sample is the only thing this report attends to and there could be other malignant areas. But that is always the case.

Often with our disease we don't get definitive results or conclusive reports. If you feel that is the case, then ask your doctor to enroll you in a time-phased screening program where a CT scan is administered say once per quarter and changes can be tracked over time.

As to the results on this report, negative for malignancy is a wonderful outcome in our community.

Stay the course.

Tom 

[walfredo2001]

18 hours ago, walfredo2001 said:

 

Thanks Tom- still completely petrified about the upcoming tests, but I guess I need to take good news for today and continue on.

I appreciate your feedback a lot!

[Karen_L]

What a PET scan will do is give your docs more information. Right now, from the biopsy they have, they can't see stuff that indicates cancer, but they also can't see (via the biopsy) what else might be happening. This explains exactly what a PET scan is and how it fits into a diagnostic process. "PET" is short for "positron emission tomography", so when you get to the page, look for the subheading that says Positron Emission Tomography (PET).

Unfortunately for all of us, there's not one test that says whether you do or don't have cancer. Right now you're in the agonizing part, where your docs are collecting data. Once they have a lot, they sit down and see if and how it all works together.

Try not to torture yourself-- each test gives only one piece of the puzzle. Sometimes, the same test will give two pieces of information, one of which might say, "No cancer" and the other, which might say, "Hey, this is kinda weird. Let's get more data." So every time you get a test, you need to see it as just one more piece of the puzzle, until your doc says, "OK, what I think you have is XYZ and here's why I think that."

One step at a time, my friend. It is really hard, but it's the only way. I like that you say "I need to take good news for today and continue on." Yep. Find the goodness in each moment and celebrate that. 

Karen

[walfredo2001]

Thank you both for the thoughts and information.

I was able to get in for my PET scan on Friday.  The results were worrisome, but not definitive for a localized malignancy where the tumor is located.  No sign of spread to any other areas...

My initial thought when receiving this info Friday was to want to have surgery as soon as possible to remove whatever it is.  My pulmologist has instead referred me to a specialist pulmonologist who wants to remove the tumor using a rigid bronchoscope and laser.

I am meeting with him this afternoon at 4 PM to get more information about the procedure, which they would like to schedule for Tuesday or Wednesday of next week.  In his words, a thoracic surgeon would almost certainly not agree to perform a lobectomy without a formal cancer diagnosis, and by removing this with the bronchoscopic procedure it will have the following benefits:

#1- they can do it much sooner then they could schedule a VATS surgery (which the scheduling process is likely not even possible to get rolling without further diagnostic tests)

#2- it has a very good chance of fairly immediately fixing the current symptoms in my lung from the blocked airway (atelectasis, inflammation in airways)

#3- it is also definitively diagnostic as they can take samples from the growth after removal... in certain scenarios, where those are found to be benign, it would also likely be curative, leaving lungs in tact...

Are there any questions or concerns that this group thinks I should ask at the consult this afternoon?  I'm not particularly scared of the procedure itself... I do worry it is likely the lead up to a VATS surgery, that to me in a lot of ways I'd rather just do that and skip this step.

 

[Karen_L]

Walfredo,

Slow down, my friend. You seem to have already decided that you're going to end up with VATS surgery to remove part of your lung. That's not what I'm hearing your doc saying is necessary-- HOORAY! There's no definitive cancer diagnosis-- HOORAY! 

The benefit of doing this bronch-approach is that it's not anywhere near the big deal that a lobectomy would be. I imagine it would actually be performed on an outpatient basis.

Then they could biopsy the dickens out of it. If it were to be cancer, you'd have at least gotten the big badness out of there, thereby minimizing the potential for spread. If it's not cancer, you'd have gotten the badness out and be able to learn what might be next treatment-wise, which may be nothing. 

Learning is great-- unless you are learning enough to leap to conclusions that may really have nothing to do with you. That's why you see so many cautions about avoiding Dr. Google. Take deep breaths and do a little flexing of that patience muscle. Waiting is the worst. But sometimes that's where we are....

Hang in.

Karen

[walfredo2001]

Karen,

Thanks for your thoughts much appreciated!

The consult went well yesterday, and I do like the interventional pulmonologist that I’ve been referred to. 

The uptake on the PET throughout the area of the tumor is 9.75.  I know without a biopsy confirming, it is not a “cancer diagnosis”, but it’s an endobronchial tumor completely blocking an airway with a GFU uptake that very strongly suggests cancer. It seems to me that we are trying to determine the type of cancer at this point, not if…

The most common treatment for a localized lung tumor blocking an airway, whether benign or cancerous, is a lobectomy… but the location of it is such that it is a fairly complex surgery- would require a sleeve resection and possibly 2 lobes removed… 

My pulmonologist believes if it is a carcinoid tumor he can treat it entirely through broncoscopic procedures- 2 more bronchoscopic procedures after this one next week.  If it’s an atypical carcinoid or something else more aggressive- this procedure has no negative impact on vats surgery or radiation treatments that would follow.  If it’s benign the surgery next week could be curative and monitoring would be all that’s required. 

Im doing pretty well so far this week and have found peace with this course.  I like having a plan… next Tuesday is the procedure, before next weekend I’ll have a definitive diagnosis, and next steps will go from there. The uncertainty the last 4 weeks has been the hardest thing I’ve dealt with. I’m a 41 year old widow with boys 10, 8, and 3.  The idea of leaving them alone is more then I am capable of truly processing.  

Thank you to this forum and everyone’s feedback. I have my fingers and toes crossed for next week and genuinely appreciate every story I’ve read on here and every person who helps others through this horrifying process. 

much love ❤️ 
 

 

[walfredo2001]

Hi all,

I wanted to follow up on where this crazy roller coaster ride has taken me since the last post.

Last Tuesday 5/24- I went ahead with the rigid bronchoscopy w/ laser and cryo resection of the endobronchial tumor.  The surgery went fairly well... took 4 hours under general anasthesia as the growth was more thick or potentially calcified then expected.  Pictures from the broncho camera show it blocking over 95% of airway and then being gone.  Fairly minimal recovery, mostly done in a few days.

The plan was I should receive a diagnosis on Friday... and make a plan for whatever next steps from there...  Pathology couldn't get to the test by Friday- so my pulminologist who did the surgery called me at 5:30 on Friday evening and told me he hoped to hear from him Saturday and would give me a call.

Long holiday weekend comes and goes, and no call... Isn't waiting fun!  This morning I get a call from pulmonogist with quite an update...  The pathologist and him talked Saturday, and the patholigist doesn't know what it is.  He is going to try to put his heads together with 2 or 3 colleagues locally in PDX to give report Wednesday or Thursday, but Pulmonologist says its overwhelmingly likely this will be sent off to the Mayo clinic this week, who would be able to likely provide diagnosis by late NEXT week.

What he learned from the Pathologist on his call this weekend- #1- it is not small cell or non small cell lung cancer, #2- it is not a carcinoid tumor (either typically or atypical), #3- it is not a harmatoma.  So that covers somewhere around 99% or so of endobronchial tumors.

I'm beyond impressed by everyone who has been able to get through the diagnosis phase...  IT's been 41 days since my first CT scan, 32 since my first bronchoscopy, and no longer even a direction in regards to what it "might be" except for its very, very rare...

I am completely freaked out, and not sure at all how to hold up for another week and a half with no idea what is going on... I feel like the only positive thing I have going for me at this time, is the PET scan showed it localized, and I wish we could just schedule a day for lobectomy as soon as reasonably possible, and figure out what it is after it is out of me.  

Patience was doing ok... and this reset of all the timeline and undoing of the "previous suspicions"  is hitting me really, really hard today.  I want off this ride lol

[Tom Galli]

Walfredo,

I don't blame you for wanting off the ride. There is however a large amount of comfort from what the pathologist reported: not small cell, not non small cell, and not a carcinoid tumor. What is the old expression--three nots make a never....

The only comfort I can be concerning your wild ride is that it will end, hopefully soon with an assist from the Mayo Clinic.

Stay the course.

Tom

[Judy M2]

Walfredo, you've waited a long time not to have definite results yet, so it's no wonder you're anxious. I really hope you get answers soon. Take care. 

[walfredo2001]

Some items for next week- curious if anyone has thoughts or experience with anything similar-

 

#1- tumor board at the hospital group is going to review my case Monday morning. (Has anyone had this done? Do they provide a report to me after?  Findings, suggestions? Is it more of a discussion- or do they try to meet minds and create a recommended action plan that is then provided?)

#2- pathology report came back late Thursday afternoon, but basically just stated it had been sent Mayo and Dr name of who is assigned now to provide diagnosis. No discussion of findings, suspicions or anything similar. This is supposed to be late next week, whatever that means, that the diagnosis from Mayo comes back. 
 

#3- my pulmonologist agreed to refer me to a thoracic surgeon last week, and I have a consult scheduled for Thursday early afternoon. What questions are good to ask?  
 

with the timing of the tumor board, the Mayo report, and the thoracic surgery consult… i may or may not have a lot more info then I have currently when I meet with them. 
 

My hope is not to insist on a particular course (ie surgery no matter what)) but to have that option thoroughly explained (risks, complications, challenges specific to me based on location in bronchial airway etc) and have everything queued up to be scheduled asap if the diagnosis from Mayo suggests it would be the appropriate treatment, or potentially also if it continues to be inconclusive with an open ended timeline for further testing.  
 

Haha- so many questions!  Would love any insight or thoughts any of you might have!

also I think I’m somewhere between an F or F- in regards to managing stress this week. Any tips lol? 
 

cheers

[BridgetO]

Hi Walfredo, Tumor board review is pretty common, especially where there's something unusual, which you certainly have! My surgeon took my case to tumor board to see if anyone thought my small tumor could be biopsied short of surgery. Noone thought it could be done because of its unusual location.  I didn't get a written report, but just a verbal one. Not sure if this is the general practice. I would suspect they'll be talking about challenges due to your tumor's location. But they may need to know what the Mayo clinic says before making recommendations

Seems like it will be hard to know what questions to ask, or for the surgeon to suggest a course of action until they hear from Mayo.  

Waiting is the hardest part! I don't have any great ideas about stress relief. When I was waiting for surgery for another non-lung cancer, the doctor offered to prescribe some calming meds. That might be a possibility for you,

[Karen_L]

I dunno, Walfredo, I think you're more in the A range of stress management. (My criteria for awarding myself an A may be different than yours: Did I get out of bed? Did I get dressed? A+ range would be, Did I cook dinner? Did I engage in even the smallest bit of familial relationship?)

1. My case regularly goes to the tumor board. They meet weekly, "they" being any number of oncologists, pulmonologists, radiation oncologists, and others. They get into the nitty gritty of the cases before them-- apparently the discussion can become quite spirited-- and come to consensus on the best course of action for the patient. It's very much a consensus process, as I understand it. Ideally, what would emerge is a refined diagnosis and/or treatment path. 

I asked once if I could go and received a resounding NO from my oncologist. The radiation oncologist explained that it's because docs are notoriously bad at remembering to protect patient confidentiality in front of non-medical folks when discussing previous cases that might be relevant. I never received written reports, but the oncologist typically calls to report, and then references the decisions in any of her updates; the rad-onc always calls to talk though the board's discussion.

2. It's amazing that the Mystery Growth in your airway is gone! Isn't it more amazing that it's not NSCLC or SCLC?! My hope is that you would take a breath and rest in those findings. Why do I say that? Your airway is clear, there's no sign of other badness right now, therefore, you can take a breath and not think about it, at least until you hear from Dr. MayoClinic.  (That's just me, of course-- I finish a round of scans and/or treatment and breathe a sigh of relief that I'm free for the next x months until the next check-in-- and I live like I'm free, too. But, this is something I've been able to do only after time-- more than a year-- in this lung process, so if it sounds like I'm talking Martian, just ignore me.) 

3. Just curious-- why see a thoracic surgeon right now, vs. after Dr. MayoClinic weighs in? Maybe you have some mycobacterium that surgery doesn't relate to-- my mother-in-law did-- or some other thing. During the two months after my tumor was discovered, as my diagnosis was being clarified and before treatment was established, I kept wanting them to Do Something, anything, to help me feel I was more in control. What's your hope for your surgical consult--to get more information about what a larger surgical intervention would involve? It's hard to suggest any questions to ask until you've articulated your hopes for the visit. 

8 hours ago, walfredo2001 said:

and have everything queued up to be scheduled asap if the diagnosis from Mayo suggests it would be the appropriate treatment, or potentially also if it continues to be inconclusive with an open ended timeline for further testing.

I really encourage you to hold off on insisting on surgery if things continue to look inconclusive. Unless, of course, thinking about this helps you feel calmer. 

I'm impressed with the decisive action your pulmonologist is taking. I encourage you to call to get the details of the tumor board discussion. It sounds like details might be helpful to your stress situation right now? 

As for stress management, is there anyone who can sit with your boys (or somewhere you can bring them) so you can take a long walk or get a good cup of coffee and some excellent takeout, or a hot bath, or some exercise? Is there a friend you can lean on? 

Hang tight, we are all rooting for you.

K

 

 

[walfredo2001]

Hi all,

Quick update on my story.  Yesterday late afternoon the Mayo Clinic submitted their report...  

So 2 weeks with the Mayo folks, and they also aren't sure what it is.  The final note, at least someone agrees with me, that regardless of what "exactly" it is, we need to get it out surgically ASAP.

So the next steps will be arranging that.  I'm curious if anyone has gotten a second opinion on a thoracic surgery consult?  I consulted with the one through this hospital group last Thursday, and he was very nice and does the robot VATS... but has also only been doing these since February, and it sounds like this is a pretty delicate one where it is possible that it could end up being 1 lobe, or 2 lobes that need removal, along with sleeve resection... We have a cancer center in town that looks like it may have more expereinced surgeons available- is it common or a good idea to get a second opinion on the surgery plan itself?  

 

CONSULT DIAGNOSIS
FINAL DIAGNOSIS

Lung, right lower lobe, endobronchial biopsy of mass (SG-22-0002863; 05/24/2022; CA-22-3526):
- Low-grade spindle cell neoplasm, of uncertain type and uncertain biologic potential,
with classification PENDING additional testing and an additional report to follow (see
Comment).

Comment:

I have sent material for our
next-generation sequencing panel that Includes 138 genes commonly rearranged in mesenchymal
and
salivary-type neoplasms, in the hopes that a more definitive diagnosis can be reached. As this
testing will take some time (approximately two weeks), I am issuing this preliminary report
today, but I will issue an additional report when testing has been completed. Regardless of
the
outcome of this testing, this mass should be surgically resected, if possible.

 

Thanks again for everyone... It's not the best news, but I am quite relieved to have an action plan, and fairly close to an actual diagnosis after nearly 2 months!

 

[Karen_L]

It’s pretty significant surgery. I’d suggest a second opinion. I’m DMing you with some names. Hang in.

[BridgetO]

I agree with Karen that a second opinion would be a good idea for this surgery. If given a choice, I'd want a surgeon who is experienced with VATs or robotic to do this.  

[walfredo2001]

Thanks for the feedback!  
 

Now have my 2nd opinion consult set for this upcoming Monday.
 

Placeholder on the calendar for surgery with 1st surgeon I’ve already consulted with for July 7 if I proceed with him. 

Estimated follow up supplement report from Mayo is to be completed next Wednesday. 
 

Hurry up and wait at least has some baby steps forward this week

[LouT]

If you do follow through with the surgery there is a blog you should read titled, "Thoracic Surgery Tips and Tricks" and it speaks to pre-surgery, day of, and post-surgery tips and tricks for lung surgery.  It can be found here.  You may find it useful.

Lou

[walfredo2001]

12 minutes ago, LouT said:

If you do follow through with the surgery there is a blog you should read titled, "Thoracic Surgery Tips and Tricks" and it speaks to pre-surgery, day of, and post-surgery tips and tricks for lung surgery.  It can be found here.  You may find it useful.

Lou

Thanks Lou!  Super helpful. I will be going through with surgery for sure, just deciding on which surgeon. 
 

How close to fully recovered do you feel over time?