Are We Too Late?

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mbrrna
Are We Too Late?

My 57-year old brother was finally diagnosed Friday with Invasive Mucinous Adenocarcinoma after being misdiagnosed with pneumonia since June 2020. It started with consolidation in the lower right lobe, but now his right lung is fully compromised and it has spread to his left lung. So he's had the cancer untreated now for almost a year and it's so widespread. Are we too late? The thoracic surgeon who did the wedge resection removed three tumors for testing and says he won't refer to a cancer hospital until he gets the results in a few weeks. He's ordering a PET and MRI, but again, they won't be for a couple of weeks (we're in Canada). We're concerned that it's going to be at least another month or so before he even starts any treatment, if any is available. Is there anything we should be doing, asking, pushing for? Are there any treatment options? Any advice would be appreciated. We understand Dr West is the expert in this type of cancer. Is there someone in Toronto similarly experienced? We understand it's a process but isn't further delay dangerous or is that irrelevant at this stage? Admittedly we're in shock and panic mode! Thank you.

JanineT Forum M...
Hi mbrrna, Welcome to Grace. 

Hi mbrrna,

 

Welcome to Grace.  I am so sorry to know about your brother's diagnosis.  Of course, y'all are in shock and panic mode.  It's what happens to us when a cancer diagnosis hits in the home.  most of us are shocked then stressed while we try to make sure our loved ones get the best care and at the same time, you realize you have a lot to learn in a short amount of time.  It's why Dr. West started Grace and why I never left. 

 

Unless your brother is in immediate need of care it is without question best to wait on study results.  You want to get it right the first time, even if it means waiting.  Especially now, many if not most Invasive Mucinous Adenocarcinoma have a Kras mutation and there are some very promising clinical trials happening that may be appropriate and available.  But trials have tight restrictions, often including whether or not a person has had a specific treatment or the sequence of treatments or whether or not they've had treatment at all.  So careful planning is important.

 

I'll ask about specialists in the Toronto area. 

 

Waiting is one of the hardest parts and you will often wait (it can be helpful to know where the stress is so you can name it).  On a similar note, my husband was diagnosed with ortho issues first and PT made matters worse along with all the other diagnostic time consumers it was 5 months before his pancoast tumor diagnosis.  And against all odds, he's still here 12 years later.

 

You're not too late.  To paraphrase a friend, there's always a reason to be hopeful.

 

All the best,

Janine

 

I really like this post. There are more therapy options today for many variations of lung cancer but chemo can still play an important role.  Plus the title and first couple of PPs are a must for us all.

JanineT Forum M...
Dr. West said, "Natasha
Dr. West said, "Natasha Leighl is a global leader there.   Princess Margaret Hospital"
 
This may be helpful too.  Lots of excellent info.
 
JanineT Forum M...
Another recommendation from

Another recommendation from Dr. West, "One more great doc also at Princess Margaret is: Adrian Sacher, MD, MMSc, FRCPC"

mbrrna
Thank you so much Janine and

Thank you so much Janine and Dr. West for the recommendations and the articles. He is being referred to Princess Margaret. Much appreciated.

JanineT Forum M...
Very best of luck to you and

Very best of luck to you and your brother.  Let us know if there's any way we can help.