Scruboak

So good to have an update.  ❤️

Kelly,
So sorry to hear about your mom.  You covered a lot in your post and much of it is around the "malignant pleural effusions".  These are serious indications of difficult prognosis.  You need to sit with the leader of your mom's medical team and have a frank discussion about being properly informed of your mother's disease, diagnosis, treatment, and prognosis.  If they won't do this then you need to request different doctors that will properly communicate with you and your family.  

Once you can get that issue resolved you can then better understand what is happening, and what is necessary to do.  Please update us on your progress in this situation.
Lou

Hey everyone it's been awhile since I posted last. My Oncologist has me doing scans every six months don't know if thats good or bad. Had my scans a couple weeks ago and I'm still ned. Iv been on targeted therapy for 2.5 years and ned for 2 years and very grateful. Lungevity set me up with peer to peer support 2 years ago. He has been on the same targeted therapy I am on for 7 years with clear scans. I am hoping for the same results Hope everyone is doing well and I'll check in later
Chuck
 

Nutshell background-1.6cm right lower nodule found incidentally 2/23. Monitored with no changes until last week. CT says it is now 1.9cm. Doc says it's go time to get it out. Segmentectomy scheduled for 6/5.
I had a PET scan yesterday morning and got the results in the afternoon. I never thought I would think a report that says "concerning for malignancy" would be good news, but I think it is overall. The nodule had an uptake of SUV 1.1/1.2. The rest of the lungs are clear with no other suspicious things.
The report says..."Given interval increase in size and mild metabolic activity this finding is concerning for malignancy." 
BUT. also says.. "The remainder of the study demonstrates no abnormal hypermetobolic glucose activity to suggest malignancy/metastatic disease elsewhere."
The PET marks the nodule as 1.6cm not 1.9cm so who knows on that. 
Side note- scanxiety is for real. It was a nerve wracking day. I was a wreck thinking about what could be lurking. There is still a lot to worry about but I am breathing somewhat easier.
Aimee
 

Good morning all. Surgery is done (Monday afternoon) and I am home (late afternoon yesterday). Ended up with an upper right lobectomy and removal of 12 lymph nodes. Surgeon said it’s normal to feel like I’d been hit by a Mac Truck and that I did very well. She aced taking out the chest tube, speaking very fast to distract me and it was done 😊. We should get some of the details from pathology tomorrow, some results will take longer. Surgeon did say the lymph nodes looked and felt like they will come back fine but can’t be 💯 sure until pathology does their thing. Even though I read and reread Lou’s tips and tricks for surgery, I find I’m still surprised at how just a little walking around the house tires me out. Guess 20% less lung capacity will do that. I’ve been taking the pain meds and am comfortable for the most part. I have a whole new appreciation for our bed that has one of those frames that goes up and down at the head and feet. Especially after not sleeping much in the hospital. 
Thanks to you all for your encouragement and knowledge. It has been invaluable. I’m sure I’ll have lots more questions going forward down this road.

Doctor just called. Report on the tumor that she removed was NSCLC. ALL the lymph nodes she removed are clean and clear. No further treatment will be needed. We will discuss future surveillance when I see her in 2 weeks. My family is doing a happy dance. I look forward to doing one as soon as I’m healed and can breathe normally again!

Thanks everyone. I’m getting along slow but steady. Have a follow up with my surgeon today. We’ll see what she has to say. 

I’m 9 days post surgery and I’m doing ok.  Still very uncomfortable where they took the chest tube out (pulls and pinches) and sleeping on my back is getting old.  I am pushing myself to  walk 3 times per day, 1 mile each time and move about the house in between. The stairs are a challenge from a breathing standpoint but that’s slowly improving. My spirometer is getting a regular workout. Although this hasn’t been as easy as I thought it would be, I think I’m progressing. Some days are better than others which I think is pretty normal. 

I checked into forums just to see how you were! I hope you’re enjoying your walks and can plan a beautiful weekend, Blossom!

Thanks Lou, I appreciate your encouragement. A week from now it will be over and I’ll be home (hopefully) thinking “well, that wasn’t so bad”!

Thanks Livin Life. I was so upset even though I understood. I went for a long walk to shake it off which helped. I’ll continue walking everyday to relieve the stress and to prepare for my recovery after surgery. What else is a girl to do right?

Thank you Karen, I appreciate your kind thoughts and encouragement. Your comment about neighborhoods being interesting at 3 am made me laugh. I have found out recently who walks their dogs at 4 am 😊. I find thinking about our travels over the years helps me go back to sleep. A week from tomorrow I’ll be at the hospital getting prepped for my 8:30 am surgery and will any luck will have some wonderful anti anxiety meds on board 👍

@Blossomsmom For what it's worth, a friend once consoled me through a huge no-sleep period with, "Nobody ever died from lack of sleep." I'm not sure it's true, but it somehow made it easier. Rather than lie there, perhaps you'd consider getting up for warm milk with a little honey and cinnamon. It might not ease you into sleep, but it will be a kindness you might enjoy. Plus, neighborhoods can be so interesting at 3 a.m..... Ask me how I know. You can do this; you will do this, and you will be OK. Sending peace. 

Thank you all for your kind and encouraging posts, I appreciate them all. 
I’ll stay in the hospital as long is absolutely necessary but I’m very fortunate that my daughter is an Emergency Room RN and will be here when I come home. I know she’ll take good care of me and be very vigilant watching for any problems that could arise. And she’ll help keeping her dad calm as well 😊

Always great to hear good news.  My at all your future scans return with the same results.

I love this news, Scruboak!

Awesome news! Fellow 4 year NED buddies!

@Scruboak  Four years or five, a clear scan is a clear scan and worthy of a deep breath of thank goodness and a barrel-full of WHOOPEE!

Yesterday I had my five year scan with no evidence of recurrence! The nodule and atelectasis around the scar has disappeared.  It is a good day.
edited - when talking to one of my daughters I realized it was 4 years since diagnosis.  Ahh well, 4 years is good too!

The anxiety really is the worst part❤️, isn’t it? Blessings and all goodness for you.

Yesterday I had my five year scan with no evidence of recurrence! The nodule and atelectasis around the scar has disappeared.  It is a good day.
edited - when talking to one of my daughters I realized it was 4 years since diagnosis.  Ahh well, 4 years is good too!

The anxiety really is the worst part❤️, isn’t it? Blessings and all goodness for you.

Yesterday I had my five year scan with no evidence of recurrence! The nodule and atelectasis around the scar has disappeared.  It is a good day.
edited - when talking to one of my daughters I realized it was 4 years since diagnosis.  Ahh well, 4 years is good too!

That is awesome Scrub!  You have to be on cloud 9!!!  Thanks for sharing....

Boy do I love hearing this kind of news.  Congratulations and get out there and enjoy all that wonderful Spring weather.
Lou