Update since pulm appointment/3 CT scans

[Livin Life]

Just to refresh everyone's memory.... Had chest CT in 2015 due to moderately impaired gas exchange (DLCO) on PFT (autoimmune-related). Ground glass found in upper and lower right lobe (1.0 cm and .5 cm, respectively) with several sub-centimeter ground glass in upper left.  Same in 2016 though upper left all gone which won't surprise most of you.  Ongoing SOB issues so new CT done in Sept 2023.  Ground glass now in every lobe, 2 in two lobes.  Upper right stable at 1.1 cm and lower right changed to what appeared solid and now 7 mm.  All of this still present in Dec 2023.  July I now get the impression all is still there tho two of those are deemed lymph nodes - all considered stable.  

Met with pulm today (a Fellow) for ONE HOUR - when does this ever happen?  and she was not rushed and we just had a conversation... so nice!!! Her supervisor came in for a bit at the end.  They were initially doing scans for ILD (I saw when she screen shared - ha!).  Looks like asthma esp given all my history including childhood - so back on inhalers.  She believes autoimmune worsening this and at higher risk for other autoimmune lung issues which is why I have to have annual PFT's and echo's.  She still mentioned the possibility of "slow growing cancer"- "adenocarcinoma."  So did local onc last month.  I have soooooo many appointments, tests, etc. and can only work half time due to all my medical issues, esp. POTS - thankfully I'm self-employed (in with a small group where we all share expenses) so this medical stuff is just exhausting, never ends and only gets added to over time.  So given stability I asked for 2 year break until next scan.  She wanted 1.5 years and then relented.  It just makes sense at this point.  I'm soooo relieved even while it's still "more." 

I'll still hang out on here though doubt cancer now even while I realize persistent ground glass change change at any point - or not....  I've also lost two sibs and my father to lung cancer (another sib and my mother to other forms of cancer) so.....  Just wanted to share with you all... The two years takes a load off for me....

[edivebuddy]

Congratulations I think.  I would continue annual scans.  To me it means I'm alive and if they to find something there's options available.  

 

IMO anyone with a higher than normal chance of getting lung cancer should have an annual CT.  

 

While I would not expect a cancer that evolved from a ground glass nodule to ever grow fast earlier is always better.

[Karen_L]

@Livin Life I'm happy for you-- to have such an extensive visit with a doctor is a wonderful thing. My pulmonologist is a delight in that way; my former pulmo was almost a friend. Maybe it's that particular specialty that is so...humane?

I understand your desire to get these pesky medical appointments out of your life. At the same time, when I was offered a one year repeat of brain MRI (in lieu of 6 months) my instantaneous response was NO. Quarterly CT scans are also a pain, and the contrast gives me pause, but I plan to immediately and aggressively address anything that shows, so I want that information as soon as it's visible. As you settle back into your work and life routines without the worry and medical testing/appointments, I hope you'll reconsider your desire to postpone scans and tests. 

I also wonder what the oncologist thinks about the pulmonologist's views. Slow-growing adenocarcinoma, arrested early, gives you a shot at a much longer life. You could do this via a vide consult, making sure the pulmonology office shares files well in advance of the appointment. I wonder if a biopsy of the areas of concern would be appropriate? 

I am glad you are resting more easily in your thinking. Please keep us posted!