So confused and not sure what we should do?

[Moonbeam]

My husband was diagnosed with lung cancer Nov. 14th after having a bronchoscopy with his pulmonologist. The surgical pathology came back as poorly differentiated carcinoma ...and squamous cell carcinoma being favored. He immediately recommended surgery..a pneumonectomy. He recommended a few surgeons locally but we made the decision to go to a big cancer center in Tampa. We went to Tampa and met with his surgeon whom agreed with my husband's pulmonologist. He had a PET scan and a Brain MRI . Brain MRI came back with no evidence of metastatic disease in the brain. The PET Scan showed the left mainstem bronchial mass and NO evidence of metabolically active distant metastases. With all in agreement that having a left pneumonectomy was the best choice for him, he had surgery on Dec. 10. They did, however, find that there was lymph node involvement. He had a total of 6 lymph nodes with cancer. 4 were located inside the lung specimen and 1 in the level X position as well as 1 in the level XI position. (more on this in the final surgical pathology report) Surgery was successful and he has slowly recovered and feeling much better now that it's been a month. 

So here we are, Jan. 12th. and here comes concerns (are they valid or am I reading too much into things) and is this the course he should take.

After surgery, the surgeon mentioned the lymph node involvement. But also stated the bronchial margin was negative. When the FINAL surgical pathology report came out which included the gross description and the frozen section diagnosis, the key pathological findings were as follows: 

LUNG: Resection SPECIMEN: Procedure: PneumonectomySpecimen Laterality: LeftTumor Site: Upper lobe Lower lobe
Tumor Size: Greatest dimension: 3.6 cm

TUMOR:
Histologic Type: Non-small cell carcinoma, subtype cannot be determined Histologic Grade: G3: Poorly differentiated

EXTENT:
Visceral Pleura Invasion: Not identified

MARGINS:

Bronchial Margin: Uninvolved by invasive carcinoma
Vascular Margin: Uninvolved by carcinoma
Other Attached Tissue Margin: Tissue margin: Tumor extends to the outer surface of the extruding portion of main bronchus.

STAGE (pTNM, AJCC 8th Edition): Primary Tumor (pT):

PT2: Tumor >3 cm but 5 or less cm or having any of the following features: Involves the main bronchus regardless of distance to the carina, but without involvement of the carina; 

Invades visceral pleura (PL1 or PL2);

Associated with atelectasis or obstructive pneumonitis that extends to the hilar region, involving part or all of the lung.

PT2a: Tumor greater than 3 cm, but 4 cm or less in greatest dimension
Regional Lymph Nodes (pN): PN1: Metastasis in ipsilateral peribronchial and / or ipsilateral hilar lymph nodes, and intrapulmonary nodes including involvement by direct extension

Two weeks later, we went back to cancer hospital and met with a thoracic oncologist. The meeting went well and he discussed 4 rounds of chemo and possibly radiation to the stump. He mentioned a study he could maybe qualify for and then said "no it's full and you don't meet all criteria. We scheduled appts for a return (in two weeks) for imaging, blood work and to meet a radiation oncologist. All seemed normal UNTIL his notes went online. He wrote: patient recently had a pneumonectomy for left lung cancer. The surgical margin was positive??? Left pneumonectomy - positive soft tissue margins (extruding portions of the main bronchus). Here lies the confusion....his margins were uninvolved. When I wrote the surgeon for clarification, his response was this: In terms of the margins, the area where I divided the bronchus (windpipe) from the rest of the bronchus had no cancer. The cancer grew from inside the lumen of the bronchus through its wall. But this is the portion of the bronchus I removed. That is why the true surgical margin is negative as stated in the report. Nonetheless, it is a sign of an aggressive tumor and he would benefit from chemotherapy and possibly radiation.  IS THIS SOMETHING I SHOULD BE CONCERNED ABOUT? or am I splitting hairs? 

We met with an oncologist here who reviewed everything. He is ready to start treatment.We like that it will be done close to home. Port placement next week. Chemo to start the week after. Mentioned the drugs used will be cisplatin/gemcitabine (is that Gemzar?) However, some advice I have gotten is to wait for the genetic makeup of his cancer cells/tumor as that will be useful in the drugs that will be used?. What I know so far is he has a  negative expression for PD-L1. 

With all of this so far, I am left feeling very comfortable at a time where all is in disarray. Am I too focused on margin discrepancy? Is it a discrepancy? Should we wait for port placement and chemo until we go back to cancer center and get all results? Does my husband have "time" to wait???? I have tried to reach out to oncologist at cancer center and am being told he will discuss everything at our meeting??? Advice? what would you all do? What questions should i be asking that hasn't been asked. Thank you fo all your help as always!!!! XX

 

[LexieCat]

I don't think it's a discrepancy.  The surgical margins were clear, but the tumor apparently grew through the bronchus in the portion that was removed--which, as the doctor noted, is a sign of an aggressive tumor.

I don't see any reason to postpone treatment for the sake of getting the biomarkers.  Targeted therapy can always be used later.  Who was it that suggested you "wait" for the test results?

I think if it were me, I'd want to get treatment started ASAP.

[Moonbeam]

LexieCat...Thank you for responding so quickly. I'm glad you are telling me it's not a discrepancy. was very focused on that part. Can you explain to me why it's considered aggressive? and if removed, then their concern is about cancer cells that may have been left behind which would explain chemo and possibly radiation to the stump?.  We know chemo has to happen since he is N1. The "wait" came from a woman who also had lung cancer. She is a 22 yr cancer survivor whom I met thru a friend locally.

I agree with you in terms of getting treatment right away. I just want to make sure he is getting the right treatment. It's all so scary. We have had the appt at the cancer center since Dec 22. (set to go over on the 24th) When we looked for and met with an oncologist here...he said he can get started with my husband's treatment right away. I'm wondering,  should we should keep the appt for Jan 24th and see what the oncologist at Moffitt says as he is more familiar with his case since he works closely with my husband's surgeon and the care team? 

[LexieCat]

First off, I'm not a doctor and don't even play one on TV.    

Generally, the more a tumor moves through other tissue, the more aggressive it's considered to be.  As I understand it, any time a tumor "eats through" other tissue, there are more opportunities for cancer cells to spread.  The reason why the pathologist insisted my cancer was Stage Ib, rather than Ia, was that he perceived the tumor as having invaded the pleura--the lining of the lung.  My surgeon disagreed because he actually DID the surgery and felt the pathologist was misinterpreting what he was looking at in the tissue that was removed, but the pathologist won the "official" staging battle (though surgeon still disagrees).  Anyway, to the extent the tumor invades anything else, there's more of a chance that some cells escaped into the system.  

In your husband's case, we already KNOW cells have escaped because he has positive lymph nodes.  So those need to be addressed, regardless of anything else that may be out there.  I assume the radiation to the stump is just to catch any other tiny cells that might be lurking there, because of the invasion of the bronchus.  

I was wondering whether your local oncologist was working with the cancer center or whether this was a completely separate consult.  

I don't know that it's going to make a big difference whether he waits a bit longer for treatment at the cancer center--they are familiar with his case and I assume they won't make him wait longer than is safe.  I don't know how far you'd have to travel for treatments at the cancer center--how much of a burden that would be for both of you.  There's something to be said for getting treatments close to home.  You said your local oncologist agreed with what the cancer center was recommending.  So there might be no real advantage to making those trips if you don't have to.  

Obviously, only you can make the decision.  

[Rower Michelle]

Hi Moonbeam, 

Thanks for checking in and providing an update.  I can certainly understand your concerns.   Just thought I would share from my perspective, we did not wait for the bio-marker results to come in and started treatment straight away.  I got round one of the triple combo on a Thursday and the port went in on Friday.   When the bio-marker testing came back we changed the treatment plan and removed the port (which was a problem from day one for me).  

[Moonbeam]

LexieCat - was a completely separate consult. We are 4.5 hours away from Moffitt. It would be a burden to be completely honest. We went to the oncologist here and showed him all the paper work. Waiting for copies of scans, MRI's etc to get here. I'm leaning towards going to Moffitt and hearing what they have to say as far as treatment...drugs used for chemo etc. All we know is what the local oncologist has recommended. I know you aren't a doctor  but I do feel you all know what you are talking about and explain things so much better.  Now that the discrepancy has been explained clearer to me (thank you), I'm leaning towards seeing what the oncologist at Moffitt says, getting him in touch or to work with the oncologist here (pray they will do that) but at the very least,  since they are familiar with the case, at least allow them and probably feel more comfortable with treatment. 

[Moonbeam]

Rower Michelle - Thank you for mentioning that you didn't wait for the bio-marker results to come in...There is just so much information and it's hard to sort through  it all. I'm leaning towards, waiting to start chemo in our hometown and going with the original/scheduled plan of the appt with my husband's oncologist at Moffitt. Might have put the cart before the horse but going to an oncologist here without knowing what our team at Moffitt wants to do? Can you hear all my hesitation...so frustrating ...

 

[LexieCat]

That sounds like a reasonable plan to me.  And doctors share information with each other all the time.  My bet is that your team at Moffit will be willing to work with your local oncologist.  As I said, if it were urgent for him to start treatment immediately, the team at Moffit would have him in sooner.  Doesn't hurt to get two perspectives.  I'd just keep those lines of communication clear with all the providers about how you are going to go about this so everyone is on the same page.

Just remember--different doctors might suggest different drugs or treatment plans.  As Tom likes to point out, there is both a science and an art to the practice of medicine.  Doctors can't know for sure which treatment will work the best--that's why treatment plans sometimes change mid-stream.  That doesn't mean the original plan wasn't a good one, just that it didn't work as well on a particular cancer as they hoped.  There's still a lot not understood about why one person responds to a treatment and another does not, or doesn't respond as well.  So there's no way YOU can know for sure which plan is best, either.  

When I made my "no chemo" decision, I promised myself that if I had a recurrence I wasn't going to beat myself up for not having had the chemo.  It was, and is, a reasonable decision.  If it turns out to be wrong, that's not my fault or the doctor's fault (surgeon recommended against chemo).  It's just how things worked out.  At some point, a decision has to be made to go forward, and it's best not to continually be second-guessing yourself.  Just know that if Plan A doesn't work, there will be a Plan B.