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2 cancer centers giving 2 opposing recommendations--what to do


fauna13

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My mother hasn't been officially diagnosed (no biopsy yet) but our regional cancer center (well respected but not top notch) and Hopkins both agree it is likely a lung cancer with lymph node involvement.  The PET scan shows two involved nodes, one in the hilum and one in the mediastinum (forgive me for any mistakes here as I have no medical background).  

The regional cancer center is advising a bronchoscopy and mediastinoscopy to biopsy the lymph nodes.  Hopkins agrees.

If the node in the mediastinum is negative (despite activity on the PET scan) the regional center intends to continue with surgery and remove the mass, even if the node in the hilum is positive.  They recommend chemo afterwards.  Johns Hopkins, on the other hand, is advising a biopsy only if any nodes are involved.  They want to do chemo and radiation concurrently first (even though radiation makes surgery more difficult they feel this is the best protocol), followed by surgery.  Hopkins only wants to proceed with surgery first if there is no node involvement.  

If the node in the mediastinum is positive, the regional center recommend no surgery and chemo followed by radiation or surgery.  The surgeon wants to follow chemo with surgery but said repeatedly that we might be advised to follow with radiation only.  Hopkins, on the other hand, wants to start with concurrent chemo/radiation and follow with surgery.

I have no medical background and, though I can read studies, find it difficult to negotiate this decision.  To make it even more confusing, Hopkins did tell me that Sloan Kettering does not follow the same approach as Hopkins but moves forward as our regional cancer center advises, proceeding with surgery if the central node is negative, despite involvement of nodes in the hilum.  

Does anyone have any thoughts or information on this decision?  Which suggestion should we follow?  Surgery is scheduled for Tuesday 11/27, and with the holidays and the weekend coming, the doesn't leave much time.  

Thank you so much for your help.

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fauna,

Welcome here.  It is a sad topic before our grand feasting holiday.  If it is any comfort, I had exactly the same situation as you.  My surgeon used a bronchoscope to biopsy lymph nodes but after diagnosing my cancer as NSCLC - Squamous cell, he advised I should have concurrent radiation and chemotherapy to shrink the very large tumor in my right main stem bronchus to permit surgery.  This treatment did in fact shrink my tumor and the surgeon operated but radiation did cause suture healing difficulties and I ended up having two very significant thoracic procedures to seal my bronchus stump. 

You are receiving conflicting advice and unfortunately that is normal.  There is no hard and fast rule book for dealing with lung cancer.  Often, the surgeon doesn't know what he or she is facing until the chest is open.  I know folks who've had an open chest closed up because the procedure was too difficult or more cancer was discovered.  I look at this dilemma as a "choose the surgeon" problem. I made my choice for a surgeon and followed his guidance. I can't tell you which way to go. Here are some more thoughts on thoracic surgeons and how to choose them.  

I hope this helps you decide.

Stay the course.

Tom

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