CT scan tomorrow morning

[Scruboak]

I’m posting this to hopefully shift my anxiety today. Stage 1A2 invasive mucinous adenocarcinoma. Completely resected 18 months ago. I had a second VATs 2 weeks later to remove 1.8 liters of blood from my chest with the result that the surgeon had to remove part of the upper lung, too.   IMA of the lung has had little research because it is less common than non mucinous adenocarcinoma. I’ve been told that IMA has a relatively poor prognosis in terms of intrapulmonary recurrence no matter what the stage and I’ve been told also just the opposite.😩 I think I have PTSD of sorts. That two week period of trying to walk with all that blood in my lung was excruciating and depressing. At any rate, it helps to get this out with folks that understand. I took a long walk on the Rainbow trail this morning which was glorious. I try to keep some rational thoughts in mind. I’ve had a couple of scans before that have been fine but I’ve had it in my head that the closer I get to a certain timeframe post surgery, the more chance things have time to grow. That’s irrational and crazy making. I’ll let you all know as soon as results come back p. In the meantime I’m going to make some soup and thread my loom. Ah, resolve!

 

 

 

[Rower Michelle]

We all know EXACTLY what you are talking about.  There’s nothing irrational about how you are feeling.  The only thing that takes the edge off is a little bit of Xanax for me but the cure for all of this is getting the results. Good luck and let us know how you do.  🙏 

[Minh]

Hi Scruboak,

I know how it feels!!!

Prior to my lobectomy last week of stage 1A2 like yours, they told me I have lung cancer in April and I couldn't do anything about it because of my then-heart surgery for triple bypass and aortic valve replacement. I was very scared and depressed, right! Then I had been walking around for another 6 months with 2.8 liters of fluid in my lung before they could finally emptied it in 3 separate tries in 3 months. They did it twice with 1 liter emptied each time.  Then they realized the liquid still in there and forced to do a continuous draining with flourscopy feedback assist for another 0.8 liter. Again, that was scary because I wasn't sure if they know what they were doing! On top of that I had 5 biopsies (5 separate times): right lower lung, left lower lung, left lung fluid (twice), and then blood liquid biopsy. Each time, I have to wait for 5 to 10 days for the result. I was going crazy!!! I could not eat and sleep for days because the outcome of each biopsy could change my staging from stage 1 to stage 4 in the blink of an eye. Finally it turned out to be stage 1A2 which I was hoping for!!!

After surgery, just like you, I am worry about recurrence. I've been doing a lot of research and I think that if you're stage 1 and have complete resection (lobectomy), your chance of overall survival rate is relatively the same to all of the patients that share same cancer subtypes. And the subtypes include IMA, lepedic, acinar, papillary, and other variants in the same family of lung adenocarcinoma. Your prognosis is the same as other patients in the same category - not worst and not better!!!

I pray for your good scan tomorrow!!!

 

 

[LouT]

Michelle is right, we only know TOO WELL what you are describing.  But your strong now and let's get the results of the scan soon so you can really enjoy your holidays this year.  I can tell you right now my friend.  There are times when to all on the outside I look cool and calm, but the "CRAZY" going on inside my head would scare a seasoned psychiatrist.  So, you are right in line with the rest of us.  Nothing crazy here and perhaps something to calm the nerves.  For me it's playing music.  I start out worried and playing absentmindedly and before I know it I've been there two hours play and/or composing a song with no fear.  Yes, it can come back, but those "magic moments" sure do a lot to help restore my strength and sanity.  Stay strong and you'll soon be on the other side of these scans.

Lou

[Scruboak]

Thank you for your comforting responses🥰! Lou, I’m learning to play the banjo (of which my son in law - an accomplished violinist- thinks is so totally beneath him and makes comments all the time about how banjo players are always in the process of  tuning up). It does help me refocus however as long as the anxiety doesn’t totally wipe me out.

[Rower Michelle]

Love it! Playing the banjo, that’s awesome!  Yes, Lou is right, some of the things that go through our mind would befuddle any psychiatrist.   I made the mistake of saying some of those things out loud to hubby once  and we’ll lesson learned there….  
 

We’re with you today! 

[Judy M2]

Scruboak, for a banjo impresario, check out Bela Fleck. He and his group The Flecktones play the most amazing banjo-centric jazz. I've listened to him for around 30 years, he's one of my favorite artists. His wife, Abigail Washburn, is also a banjo player and has her own albums. 

Hang in there. 

[LouT]

Scrub,

I've played guitar and bass since I was 13 and love the banjo.  I played one for a while, but had to sell it during one of my "hardluck starving musician periods".  Love the sound of a good banjo player.  Please tell your SIL that there are more millionaire banjo players than violinists and then let him think about why that is.       I'm learning piano now and I can't tell you how many times I played that damn song Hallelujah before I can play it through without one error.  I now officially hate that song and will never play it again (unless someone flashes a $100 bill at me, I'm so easily bought).   Keep up your practice...it will pay off.

Lou

[Karen_L]

Scruboak, 

I'm new here, too, and will have my first "active surveillance" scans in about two weeks. I don't know much about coping other than to put one foot in front of the other. Sounds like you're doing a pretty good job of that. Looking forward to hearing more.

Karen. 

[Susan Cornett]

Scruboak -

Scanxiety is very real and we all have different ways of coping - or trying to cope. I'm down to 2 scans a year and that was a tough step for me. I was initially diagnosed in 2016 and had recurrences in 2017 and 2018. The uncertainty of what is going on in my lungs is enough to drive me crazy. As you get further from diagnosis, your mind will settle some.

 

[Scruboak]

Thank you, all of you. I kinda love you all. CT scan was good - NED. I feel good, contacted my former employer and was rehired within the hour. 4 days a week. I’m very happy but also have fears I won’t be able to tolerate the work. I just left so suddenly and feel like I need to finish something there. 

[LouT]

You go and finish whatever you feel needs it my friend.  My hope for you is that you can celebrate everything in everyday.  You deserve that joy and happiness.

Lou

[BridgetO]

NED, Yay!  I agree with Lou: celebrate everything in everyday! 

I hope you can tolerate your work--stay optimistic that you can. It sounds like you're pretty invested in it, which is great. 

I'm working although I'm 76 and I "retired" almost 20 years ago. Since my "official" retirement, I've been working off and on, usually at part time and/or temp jobs-- although one temp lasted about 3 years. I've had 3 primary cancers during my retirement. After the second one, which was a stage 3, with some aggressive treatment with unpleasant side effects, some of them permanent, I thought I was really retired, but then I got asked to go back to work, and I did and it was fine--3 days a week. When I was having those tests we all know so well to diagnose my lung cancer, I retired again, thinking maybe this time it was permanent, but a volunteer job evolved into a paid part time one. Then when covid hit I stopped working -- my pulmonologist thought it was too high risk-- until I got vaccinated and now I'm back to work for th same agency.  It's on-call at a homeless shelter and I'm working usually 3 or 4 days a week. I enjoy my job, most of the time.  

For me, work keeps me active and relieves my depression. Having  a routine that involves something meaningful is important and work provides that for me. I had a hard time during the pandemic when I could neither work nor travel. I'm looking forward to the end of the pandemic when I can again travel-- and use some of the cash I'm stashing away from my job.

 

[Scruboak]

Dance before you go out the door! Yay! 

[Rower Michelle]

Congratulations on the good news all around! That is wonderful news.  Give yourself permission to take it easy on yourself as you re enter the workforce-if it doesn’t feel right, no shame in moving onto to explore something else.  The now hiring signs seem to be everywhere.  

[Judy M2]

Congratulations on such good news! Take things one day at a time. If you run out of energy one day, the next day may be better. All the best! 

[jack14]

Congratulations! So glad to hear that for you. I’m praying that my scans tomorrow will reveal good news too. Scanziety sure is stressful.

[LouT]

Jack14,

Let us know as soon as you hear.  You now likely have 10 other people waiting for your results.

Lou

[jack14]

On 12/16/2021 at 9:29 PM, LouT said:

Jack14,

Let us know as soon as you hear.  You now likely have 10 other people waiting for your results.

Lou

I will.

[jack14]

Well, the results of my neck scan were posted today. The results are not what I had hoped for. Sorry, I was hoping that the Claritin would have reduced the tumors,and some of you might be benefit too. Maybe I didn't start it in time. Anyway here's  copy of the summary:

"IMPRESSION: Worsening of metastatic disease to the left supraclavicular and axillary regions. Adjacent masses have grown to 33 x 22 mm from 21 x 20 mm and to 33 x 22 mm from 16 x 15 mm. Supraclavicular mass has enlarged from 13 mm to 15 mm. There is certainly potential for left brachial plexus involvement."

So, I guess they will be discontinuing my immunotherapy. I have a MET amplication which might respond to Crizotinib. Last line is chemo, which I hope I can avoid. Anyway, it is what it is and I am fighting to my last breath.

[LouT]

Jack,

Sorry to hear that the results weren't good.  Has your Oncologist discussed moving to the Crizotinib in the even this round wasn't successful?

Lou

[jack14]

Thanks Lou.
Yes she has. She even consulted with an oncologist at UNC-Chapel Hill a few months ago. He has been researching MET Amplification and has published some recent papers on it.

Anyway, he told her that he believes I might benefit from the Crizotinib therapy. Because I have more than 10 genetic copies of that mutation.

[LouT]

I look forward to hearing some positive progress once you're on it.  

Lou

[jack14]

Thank you. How are you doing?

 

[LouT]

Thanks for asking Jack.  So far, so good.  Had my last 6-month scan in August and all was stable.  I get my next next August and am hoping for the same.  I look forward to hearing better reports once your new treatment starts.

Lou