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Posted

Hello,

My name is Julie.  On October 31, 2022, I had a CT scan that showed a mass of 4.0 cm x 2.9 cm blocking my airway. It had collapsed my lung. My oxygen levels were extremely low, so I was admitted to the hospital.  I was told that it was highly likely cancer. Had bronchoscopy the next morning. Bronchoscopy was unable to get good biopsy. EBUS procedure scheduled and unfortunately, not able to get good biopsy either. The way it was explained to me was they were getting fluid instead of tissue.  Had PET Scan which showed an uptake of 13.7 but fortunately only in the lung area - had not spread anywhere else.  I was only in the hospital for about 2 days and sent home with 24/7 oxygen because my oxygen levels were so low.  Met with oncologist on November 14 and Pulmonologist prior to that. Both believe that this is cancer, but of course, I need a good biopsy. Tumor board is also involved in my case. VATS procedure scheduled for Jan 5, but was canceled by surgeon the day before surgery. The mass has shrunk 1cm. Now is 4.0 cm x 1.9 cm.  He said that if it were cancer it would not shrink without treatment which is wonderful news! However, because this has been such a long process, I am still concerned. I have a follow up CT scan on April 3. I guess I am asking for opinions. Has anyone else been through this? No one is sure what this mass is.  I am told by the doctors that they have not seen a mass like this before.  I still have a collapsed lung and will probably have surgery for that at some point, but right now they want to monitor the mass. 

Posted

Julie,

A singular situation for sure.  The fact that they couldn't get tissue and the mass seems to be reducing at this time gives a level of credence to your doctors' opinion that this may not be cancer at all.  I had failed biopsy attempts as well, and wound up getting surgery to confirmed once and for all if my growth was malignant or not.  In my case it was and they removed it.  I can understand that they may not want to put you through such an operation while the mass is shrinking though.  It's not a terrible surgery but it is still challenging.  

Others may have different experience and opinions, but I would recommend sticking with the doctors' approach and pushing , when necessary, to get relief from any symptoms caused by the collapsed lung.  Please keep us updated and let us know if you are getting relief from the discomfort this causes.  If you do need to have thoracic surgery I have information to share to help you prepare for, go through, and recover from such surgery.

At this point you are not diagnosed with Lung Cancer so let's hold off on that discussion.  I have all digits crossed that you get through this with a clean bill, a disappearing mass, and no further treatment needed.

Lou 

Posted

Lou,

Thanks so very much for the advice. I greatly appreciate it!  I will keep you updated. 

Julie

 

 

 

Posted

Hi Julie 

Welcome to the forum I'm afraid I have no experience with what your going through, but I can offer you my prayers support, lou has some great advice and I'm sure others will be along soon, 

I really hope you get some good news and that this isn't cancer goodluck and take care Justin x 

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