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Posted

Hi Everyone,

I have adenocarcinoma in my LLL. I was originally diagnosed in 2009. It was an incidental finding. I went in for a breast MRI due to family history. Dr. called and said breast were fine but my lung needed further testing. I had a wedge resection by VATS. Surgeon has been following nodule since 2014. PET in May had SUV of 4.8. New surgeon (last one retired) didn't want to operate. Tumor board agreed SBRT would be best option. I had 5 treatments in June. Just had a CT, no change. I am currently waiting for an appt. with the ONC who is a lung tumor specialist where I have been going for the last 3 years. I am wanting to share with others who will understand my anxiety on this journey.

Posted

Welcome Pat.

So, I understand you had a wedge resection of a malignant nodule diagnosed as adenocarcinoma NSCLC.  Was that in 2009?  Was the PET and SBRT this year?  Does your recent CT reporting no change mean the SBRT had no effect? I'm trying to ensure I understand your situation.

Well, I understand your situation regardless.  I completely understand your anxiety.  I really wish more lung cancer treatment was one and done but unfortunately our disease is persistant.  I had 4 recurrences after NED treatments.  I've survived nearly 14 years after diagnosis and have my annual CT on August 22.  Scanziety is creeping into my life given the memories of past scans.  So I get the anxiety.  I don't know how to relieve it.  If you find a way,  please let me know.  In fact, you could make a fortune selling it.....

Take some time and get to know us.  OBTW - here is a short video on how to navigate our site. 

Stay the course.

Tom

Posted

Yes, the wedge resection was in 2009. I had another wedge resection in 2014 at the same location that was benign.  In 2016, I had another nodule and the tumor board opted to follow it since the one in 2014 was benign. Now in 2017, it was bigger than 2016. Had a PET, and of course it was back. I agree with you, it is persistent.  I am also an AF veteran. I get 30% disability for unrelated issue. I don't mess with the VA much.  I'm lucky I have insurance. As far as the last CT,  my rad onc said no change is good.  I don't like it being there.  I would rather have it taken out even if I lost my whole lung.  I'll be praying for you to have a good scan. 

Posted

Pat,

And I would agree that no change is a good thing.  What the CT might be showing is scar tissue from the fried tumor.

I didn't use VA or military medicine during my treatment either.  I had a feature rich policy that I purchased through my employer and was fortunate that my employer kept my insurance effective through almost a year's worth of surgical mayhem.  I had my whole lung taken out and given my experience believe a wedge resection would have been a much easier road to travel.  But my tumor location was not suitable for a wedge procedure.

Thanks for the prayers for good a clean scan.

Stay the course.

Tom

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