all so confusing...ugh

[Moonbeam]

Hi all. SO my husband is 4 weeks out from surgery. left thoracotomy, left pneumonectomy, thoracic lymphadenectomy, pedicled vascularized pleural flap.  total left lung removal...He is doing so much better thank goodness. Now the fun part....sifting through details...oncologist. where to go? what to do? So many things coming at you that are so foreign. And when you think you understand, you  really don't. Hence why I come here:

A few things:

(1) Stage: PT2a N1 poorly differentiated non small cell carcinoma. Bronchial vascular and pleural margins negative. They said stage 3a but then realized it was 2b and yesterday, oncologist we met with here said could be 3a as 4 out of 15 lymph nodes were positive and his location was in the main bronchus? So what stage is he and is the splitting hairs?

(2) In the pathology report...bronchial and vascular resection margins and visceral pleural were free of malignancy. However, the tumor invades the main bronchus and extends to the linked outer surface of the extruding portion (tissue margin). THEN...his oncologist from the hospital when we met him wrote: surgical margin was positive???? but under impression is says:Positive Margin, PS0. Is the tissue margin considered the surgical margin or is it all the same? 

(3) Chemo. Yes, he has to have obviously. It was found in the lymphs that were surgically removed. Hospital oncologist mentioned also radiation and targeting the "stump". However, yesterday, the 2nd oncologist (locally) said that radiation could maybe damage his tissue and since he only has his right lung left, we would cross that bridge when we got there....why is this the first time I'm hearing this? I know radiation is tough, and obviously doctors will know more thru tests etc...but had never heard that before?

(4) Genetic testing....wanting that done. what is the proper language in asking to make sure it is done? This is for clinical trials? And are those for after chemo and radiation? 

(5) Is it best to get chemo close by to where you live as opposed to going to a big cancer center where he had his operation? I worry if he gets sick during chemo treatment and we have no one locally? 

Sorry for all the questions...mind just going a mile a minute and chemo will be starting soon from what all are saying. Obvi depending upon his health and recovery from the surgery. (which is going much better as I said)

 

Thank you so much!!!!

 

[Tom Galli]

Moonbeam,

Please be mindful, I'm not a doctor but have had a pneumonectomy, lymphadenectomy and my pectoral muscle was used as a vascularized pleural flap to reinforce my trachea. So here are my answers:

(1)  I think staging at this juncture is academic.  I had a large tumor in my main stem bronchus and had many lymph nodes surgically removed (all were negative for cancer).  My surgeon and oncologist disagreed on staging.  One had me 3A and the other 3B because of the size of my tumor.  Staging in lung cancer mostly relates to the allowance of surgical treatment.  Most 3A and below can be resected.  Most 3B and above are not treated with surgery.  In your husband's case, I think the differential between 2B and 3A is the existence and location of the metastatic lymph nodes in proximity to the tumor. 

(2) I'm not sure I understand the significance of "the tumor invades the main stem bronchus" as concerns resection margins. Was not the entire lung with the main stem bronchus surgically removed?  However, the surgeon sent all resected tissue to the pathologist who examined margins and found them clean.  So I would side with the pathologist.  The surgical margin includes removed cancer tissue and the adjacent removed non-cancerous tissue (the margin).  This adjacent tissue is what the pathologist examined to ensure clean margins.

(3) I can't answer why you are just now hearing about the effects of radiation on tissue healing.  Perhaps the surgeon was not worried about radiation because no radiation was performed before surgery.  (Perhaps the reason for targeting the stump is the issue at question in point (2) -- the oncologist believes the bronchus margins are not clean).  Yes I'd expect a course of post surgical chemotherapy and he might have radiation after tissue has healed.  I would think the radiation concern is also driven by the presence of a vascularized pleural flap to provide blood flow around the bronchus stump and perhaps the trachea.  That needs to heal also.

(4) Genetic testing is a relatively new term.  The old term was pathology testing for tumor mutations.  Certain tumor mutations are present in some forms of adenocarcinoma and if present, medical oncologist may choose a form of targeted therapy to attack the cancer.  Now testing also includes screening for PD-1 and PD-L1 immunotherapy markers.  These are found in both adenocarcinoma and squamous cell NSCLC. The best way is to ask a pathology test to determine if targeted therapy tumor mutations are present and to check for the presence of PD-1 and PD-L1 markers.  This testing may be required for some clinical trials.  Your husband will undergo first line adjuvant chemotherapy post surgery.  This is a first line standard of care treatment.  If there is no recurrence, then there will be no need for further treatment or clinical trials.  If there is a recurrence, the normal treatment modality is to have second line standard of care.  In your husband's case, this could be conventional chemotherapy alone, targeted therapy alone (depending on tumor mutations), immunotherapy alone or immunotherapy in combination with conventional chemotherapy.  Second line treatment may also include conventional radiation.  Certain forms of precision radiation could be second line treatment alone or with post treatment chemotherapy depending on the size and location of the recurrent tumor.  Normally one progresses through at least second line treatment before searching for clinical trials but there are exceptions.  

(5) I had my surgery at a very large and sophisticated hospital.  I had my chemotherapy at a near by cozy neighborhood clinic because of the Cheers effect -- everyone knew my name.  The smaller setting will suffice because this post surgical chemotherapy is a standard of care.  Try and find a cozy clinic with CT and PET scan testing.  That allows the same radiologists to read scans and results are quicker and interpretations are more accurate.  The cozy clinic will handle illness from chemo-related side effects, but I would try and find a general practice physician convenient to your home.  You are right to be concerned about him being sick.  OBTW -- ensure his recovery is school aged children free.  The last thing he needs is a bad chest cold.

Never worry about questions here.  The only thing you need to worry about is reading my lengthy answers!

Stay the course.

Tom

[BridgetO]

Hi Moonbeam, you got some great answers from Tom, who has been through  this and knows the ropes. I just want to add a clarification about "genetic testing" because the term can be confusing. There are two kinds of genetic testing. First, and I think this is the kind you're talking about is biomarker testing. This is sometimes called tumor genetics. A piece of tumor is sent out to be tested for certain mutations in the tumor itself. Some of the results might be EFGR, ALK, ROS. (Mine is KRAS). These results help determine whether certain treatments are likely to work on the particular tumor. For info on this I recommend  Lung Cancer 101 on the Lungevity main site, and specifically look at the sections on Diagnosis by biomarker testing and Immunotherapy and Targeted Therapy. The site is https://lungevity.org/for-patients-caregivers/lung-cancer-101. 

The second type of genetic tesing is called germline genetics and it involves a blood test to check for inherited mutations that may predispose a person to cancer. One type we frequently hear about are the BRCA mutations that increase risk of breast cancer. Some less common inherited mutations may predispose a person to lung cancer but his testing is not routinely done for lung cancer. I had this testing because I had 3 "unrelated" cancers and I wanted to know if I had some inherited risk, so I could know if there was any other cancer or health condition I should watch for or be tested for. This second type is the one most commonly called "genetic testing". 

To help determine treatment options , Your husband should ask for biomarker testing. This is becoming almost routine for lung cancer.