Thoughts on these CT Findings

[LouT]

I was able to return to my usual workout fully after about three months.  That is a 6-day per week workout of 5 miles (power walking) and weights.  Everybody is different so don't ever be put off by comparisons.  We'll take the journey with you.

Lou

[walfredo2001]

Quick updates- Mayo Clinic follow up came in today and provided a diagnosis. 
 

Primary pulmonary myxoid sarcoma w/ ESWR-1-CREB1 gene fusion, low grade 

The pathology report says prognosis is generally good with surgical resection, approximately 90% remaining disease free. 
 

Surgery is set for next Wednesday 7/13 and can’t come soon enough!  

[Justin1970]

Hi 

Goodluck with the surgery I hope everything goes well and you can get to normal life all the best 

Take care Justin 

[BridgetO]

Wow, Walfredo, that's a rare one! Best wishes for a quick recovery from surgery.

[walfredo2001]

On 7/7/2022 at 9:55 AM, Justin1970 said:

Hi 

Goodluck with the surgery I hope everything goes well and you can get to normal life all the best 

Take care Justin 

Thanks Justin!  I’ll update once I’m done with the surgery and stable. 

19 hours ago, BridgetO said:

Wow, Walfredo, that's a rare one! Best wishes for a quick recovery from surgery.

Bridget,

No kidding!  Article I found suggested there have been 24 of this diagnosis made in recorded medical history… team Unicorn 🦄 

[Pstar]

Wishing you a good surgery and speedy recovery.

[walfredo2001]

Surgery went well yesterday.  Surgeon said she got clean margins, only needed to remove RLL, and was able to do it all VATS without having to open it up. 
 

Pain is pretty high, but doing ok.  Chest tube supposed to come out this afternoon or tomorrow, and plan is to release home tomorrow also.  
 

 

[BridgetO]

Great! Sounds like a good result. Many, including me, found that the pain was much less once the chest tube was out.

[Justin1970]

That's great news I'm so pleased for you, I hope the pain gets easier soon take care Justin 

[LouT]

It sounds like you've had a good surgery.  Now the important thing is to recover well (keep using the spirometer and move) and get your follow up scans.  Most importantly is to get back to life.  

Lou

[Tom Galli]

I restate Lou's suggestions for using the spirometer and moving. Very sound advice indeed!

Stay the course.

Tom

[Karen_L]

WOOHOO! Excellent news. 

[walfredo2001]

Been resting and starting to feel some better.  Developing a bit of a cough, but pain isn’t too bad and hoping to ease back into life sometime next week. 
 

My post surgery pathology report came in today.  My follow up appt with the surgeon is scheduled for Monday. 
 

They agreed/confirmed the Primary pulmonary myxoid sarcoma with EWSR1-CERB1 gene fusion, low grade diagnosis.  They added some more details. 

“The tumor focally involves the bronchiolar wall, however, no alveolar lung tissue involvement is identified (tumor is examined in its entirety). “

“There is prominent peritumoral and intratumoral lymphoplasmacytic infiltrate. Significant cytologic atypia is not identified. Mitotic figures are low up to 1 mitosis per 2 mm2. Tumor necrosis is not identified”

“The tumor is pT1, pN0 according to TNM pathologic stage ”

”Extent of tumor: Lung parenchyma and focally involving the right lower lobe bronchus. Invasion of:
Pleura: Absent

Bronchi: Present

Vessels: Absent

Lymph nodes: Present

Other structure: N/A

Other lobes: N/A”

If I’m reading this right- confirmed it’s localized with low grade features. However, some potentially troubling info about invasiveness with pt1 staging.  
 

 

[SamanthaThompson]

So good news! I'm sure everything will be fine we all are with you!

[Karen_L]

Glad to hear you've been able to rest a bit and that you're feeling well enough to begin to consider easing back to your life. Don't push it, OK? 

That cough...I've never had lung surgery, so feel free to completely disregard this comment. Coughs always concern me; if it increases, it may be worth a call to the doc. Other people with surgical experience will have clearer perspectives. 

Lots of new lingo in that report. I wonder what, if anything, they might do about that gene fusion. Also, does the lymph node involvement concern them? What might be next with that? 

Keep resting....

K

[LilyMir]

I developed a pesky cough after my lobectomy, it came about while recovering at home, was not present during my week's stay in hospital. It lasted a good number of weeks and was often triggered when I talked. It still comes and goes sometimes while on chemo but much milder and shorter duration. My surgeon and oncologist were not too concerned. I however did check in with my respirologist and he had me do two X-rays, 2 weeks apart since the cough persisted. Things look OK but it still rattles me a bit when I get a coughing bout but feel reassured in that it is reducing in frequency and intensity. I check my O2 often too and it seems fine. Will see what my followup CT shows in some weeks.

[walfredo2001]

On 7/21/2022 at 10:58 AM, Karen_L said:

Glad to hear you've been able to rest a bit and that you're feeling well enough to begin to consider easing back to your life. Don't push it, OK? 

That cough...I've never had lung surgery, so feel free to completely disregard this comment. Coughs always concern me; if it increases, it may be worth a call to the doc. Other people with surgical experience will have clearer perspectives. 

Lots of new lingo in that report. I wonder what, if anything, they might do about that gene fusion. Also, does the lymph node involvement concern them? What might be next with that? 

Keep resting....

K

Thanks Karen,

 

Definitely a lot of info- I think the headline takeaway is that they are confirming the original diagnosis and no surprises came up from the larger sample. 
 

Would love it all to be rosy, but I think all things considered it’s pretty favorable.  The gene fusion identified, low mitotic activity, and low grade classification with no necrosis are all “favorable” prognostic things. The lymphoplasmycytic infiltrate into the bronchial wall is a negative prognostic thing, but apparently also really common for this type of sarcoma… so anyway lots of words lol!

I think the pn0 rating and negative testing of the sample removed show lymph nodes are clear of disease.  Also what ebus, both cts, and pet scan showed prior to surgery.

Surgeon appt is Monday am and see an oncologist the following Monday to see what if any follow up steps will come next, and monitoring. 

Starting to feel pretty decent already, still taking full pain meds for at least another week though. 

Hope everyone has a great weekend!

 

 

[Pstar]

Hoping your appointments go well and that you are starting to feel better.

[walfredo2001]

Meeting with my surgeon yesterday went really well.  She is very upbeat about everything... said based on everything she has seen this looks like the kind of thing that now that is removed surgically, will not be an ongoing problem.  She was very happy with the margins, and the pathology report.  With the caveat that since it is so rare, there really isn't enough data to statistically show that with confidence.

Basic message, keep on the recovery from surgery, and go on with your life.  She wants to see me in 2 weeks to confirm the incisions have heeled well, then she wants to do a new baseline CT in late November, and then do 6 month CT's for 2 years, followed by annual ones, and after 10 years discuss if we want to keep doing those...

The tumor board at this hospital group (Providence) in PDX met about Monday morning before my appt with the surgeon.  She said the oncologist, and radiation oncologist didn't recommend any treatments, with it being low grade, they didn't think it was likely to be effective or worthwhile.

My referral from my pulmonologist for oncology was to the other really big hospital group (and only high volume Sarcoma center in Oregon) OHSU and I have that appointment scheduled for next Monday.  I am going to keep that appointment and get their thoughts on potential ways to reduce reoccurence chances and get in as an active patient.

It is really hard to get my head around where things are now after the last 3 months, but am filled with hope and working to accept good news and start to move on void of constant fear and dread

[Tom Galli]

Walfredo,

"Go on with your life"; these are wise words from your physician. Move deliberately from the void of fear and dread. In my treatment struggle, I didn't and lost lots of opportunity to enjoy people and activities. Unfortunately, life can't be lived in reverse so go forward from here accepting your good news.

Stay the course.

Tom

[Pstar]

That your surgeon is going to do a post surgery new baseline CT and then follow from there sounds like a good plan. Also good to see the oncologist and get started as a patient for down the road ( that you hopefully won’t need!) But as your surgeon said, start enjoying life, and try to curb the fear as best you can.

Pam

[walfredo2001]

Quick update-

Surgery recovery has been going really well, and I'm starting to feel a lot more like myself again.

 

Had my first set of scans today.  Looks to be pretty good

 

 

 

Impression

IMPRESSION:

Status post right lower lobectomy. Stable 3 mm lung nodule in the left lower lobe. No new abnormality demonstrated.

Dictated by: Charles A Kosydar, M.D. on 11/8/2022 2:10 PM PST
Electronically signed by: Charles A Kosydar, M.D. on 11/8/2022 2:14 PM PST

Narrative

CT CHEST WO CONTRAST 11/8/2022 10:37 AM PST

INDICATION: Non-small cell lung cancer (NSCLC), monitor. R91.8: Other nonspecific abnormal finding of lung field

COMPARISON: Outside CT chest 6/25/2022, 4/20/2022.

TECHNIQUE: The patient was not administered IV contrast. Axial CT images of the chest were acquired on a multidetector scanner. Multiplanar reformations were created. Radiation dose control: Exam performed with automated exposure control and, where
available, iterative reconstruction to minimize radiation exposure.

FINDINGS:

Assessment of soft tissues is suboptimal without IV contrast.

Hila/Mediastinum: No adenopathy or mass definitively demonstrated.

Heart: No pericardial effusion.

Lungs: The central airways are clear. Status post right lower lobectomy. No abnormal soft tissue demonstrated along the suture margin. Stable 3 mm noncalcified nodule in the left lower lobe (series 3 image 45). No nodule demonstrated.

Pleura: No effusion.

Chest Wall: Unremarkable.

Upper Abdomen: Visualized portions are unremarkable.

Vasculature: No thoracic aortic aneurysm.

Bones: No suspect lytic or blastic lesion.

[Judy M2]

Looks good! Congrats! 

[Karen_L]

Congratulations! It's so nice that you are starting to feel like yourself again. 

Just out of curiosity, do you know why didn't use contrast with the scan? 

[walfredo2001]

On 11/9/2022 at 7:10 PM, Karen_L said:

Congratulations! It's so nice that you are starting to feel like yourself again. 

Just out of curiosity, do you know why didn't use contrast with the scan? 

Karen,

Good question- I know there was some difference in opinion between all the folks I talked with.  Pulmonologist at Legacy was scheduling w/ contrast, surgeon at Providence preferred w/out, and sarcoma oncologist at OHSU agreed with that.

Sarcoma Oncologist at my consult basically said, if this comes back it will almost certainly be local reoccurrence, and the only thing that can really be done for you would be another surgery, so I’m kind of buckling in with my surgeon who I really like.  (It’s Dr Merry who you mentioned you had a consult with fyi). 

I think the basic idea is w/out contrast screens for a youngish person over a long period of time will have less long term side effect potential then doing w/ contrast.  I do meet with Dr Merry on the 28th, I think I will ask specifically why she prefers, and if there are any tradeoffs worth considering.

Hope you are doing well!  

Dan