walfredo2001

Bri,
I can definitely relate to your journey.  A CT scan found a mass that was probable for cancer in my lungs almost exactly 1-year ago today...  I also have young children, currently 11, 9, and 4. It took almost 3 months for me to receive a diagnosis, with 3 surgical biopsy attempts needed, and constant worry in between, and then just a few days after receiving a diagnosis last July I had a VATS RLL loboctomy and was "cured". 
I did my first follow up scan in November, and have my second one scheduled for May 8... While these are all fantastically positive in the scheme of all the possibilities of what could have been, it is very hard to celebrate any of this, and to not worry at times about when another shoe may be about to drop...
Congratulations on your successful surgery- and I hope some of your current challenges start to reduce as you get further from the surgery time.  I had a lot of noticeable challenges and minor pains the first 3-4 months, and it has almost all gone away at this point for me.  Being a teacher would be brutal for wellness!  My youngest is in Montessori/Daycare and seems to catch everything and bring it to my house. I've often wondered if I had needed chemo as part of my treatment plan, how the hell that would have worked at all...
Good luck to you and welcome!

Bri,
I can definitely relate to your journey.  A CT scan found a mass that was probable for cancer in my lungs almost exactly 1-year ago today...  I also have young children, currently 11, 9, and 4. It took almost 3 months for me to receive a diagnosis, with 3 surgical biopsy attempts needed, and constant worry in between, and then just a few days after receiving a diagnosis last July I had a VATS RLL loboctomy and was "cured". 
I did my first follow up scan in November, and have my second one scheduled for May 8... While these are all fantastically positive in the scheme of all the possibilities of what could have been, it is very hard to celebrate any of this, and to not worry at times about when another shoe may be about to drop...
Congratulations on your successful surgery- and I hope some of your current challenges start to reduce as you get further from the surgery time.  I had a lot of noticeable challenges and minor pains the first 3-4 months, and it has almost all gone away at this point for me.  Being a teacher would be brutal for wellness!  My youngest is in Montessori/Daycare and seems to catch everything and bring it to my house. I've often wondered if I had needed chemo as part of my treatment plan, how the hell that would have worked at all...
Good luck to you and welcome!

Had my check-up scan this morning and the results just arrived in my chart. Phew-- free for another two months! Here are the highlights:
No enlarged nodes.
No pneumothorax or pleural effusion
Minimal hazy groundglass opacities (All that prior damage is healing!)
No suspicious nodules or masses.
No bronchiectasis
Normal soft tissues of the chest wall
All good stuff. Even the question I have involves the word, "stable": "Stable moderate fullness and atelectasis in the perihilar portion of the right lower lung involving the right middle and lower lobes."  It's the first time there's been any reference to atelectasis. Definitely something to chat with the oncologist about when I see her tomorrow. Or the onc. radiologist. 
Going to have a cup of good coffee and look out the window to breathe a big sigh of thanksgiving. 
Hope you're all doing well. 
Karen
 

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

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

Hi lily and catlady 
The neurosurgeon said that the gamma knife sometimes doesn't get the whole thing so it can regrow, they said the fall probably jolted the met to touch something again and all the fluid in there is being moved around, 
I am dreading the hospital stay but my family are coming to visit so should be OK I'm gutted I've got to leave my dog though lol,
I'm not going to give up fighting this it's not fair on anyone and I know how hard it is for them aswell, the cancer team are a lot more on the ball since we said we were unhappy with things and the neurosurgeon was a brilliant and nice person that made me feel at ease, I will let you know how it all goes at the weekend, thank you so much for all your support and well wishes it really is appreciated, Take care I hope everyone is well 
Justin x

I'm so scared. Diagnosed 2020 with stage IV NSCLC. I've had 15 rounds of chemo, 5 rounds of Gamma knife, a wedge resection on my lung, a craniotomy but I've never felt this down. I have a tumor inside my spinal column. The doctors had gotten my cancer controlled and this is the only spot in my body atm. Great news but I've had radiation to it in May, a laminectomy in September , and now it has grown back again. Three times in 4 months and now I have to get 5 rounds of radiation to it. 
I'm scared about how quickly it is growing and how it isn't responding to any treatment. I've lost mobility in my legs but can walk on walker which surgeon says I should be thankful for. I've been working hard at PT but now feel like what's the point. Ugh.
  I'm feeling every emotion all at once. This will be the last series of radiation I can get in this spot due to possibly damaging spinal column even more. I could lose even more mobility and body function but if I don't get it out I know the pain I'll be in and ill die for sure quickly because of its location C7- T1 it's damaging nerves that control my arms, legs, bodily functions.
I have a tint bit of hope. We got our first real tumor Sample and it's being genetically tested and hopefully there is a better targeted therapy for me but....? 
I don't want to be bed ridden with a diaper and I also don't want my child, 9 yr old, watching me painfully die over the next 6 months. Prognosis is 1.5 years which I have repressed and can't even process. I know I'm going to do it but my biggest fear is traumatizing my child if I die and even if I live and he has to see me very sick. I've never dealt with death and kids. Idk how much or what to tell him or if I shouldnt say a thing and hope for the best. I also have a 22 year old son. What do I say to them? 

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.

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!

 
 

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.

Walfredo,
Hoping that your scan goes well.
Pam

Kelvin,
Best wishes to your mom and her scans!  I have my first post surgery scan tomorrow morning... it's definitely a stressful time.

Kelvin,
Best wishes to your mom and her scans!  I have my first post surgery scan tomorrow morning... it's definitely a stressful time.

Hi lou
Thanks for your message and support, I have just received a phone call from the cancer nurse to say they are thinking about brain surgery and not gamma knife, I'm really scared about the thought of having it done and worried that they won't do it I don't know what to think anymore I just know I've had enough of it all now, it doesn't seem like you win very much with this disease all you do is fight and get knocked back every time you make any progress 
Hope your well take care Justin 

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

Lori,
 
I had 2 bronchoscopy’s, the first flexible, and the second a rigid one with laser ablation.  The first was non diagnostic, and the second eventually was diagnostic but took 6 weeks for them to reach a diagnosis from the larger sample taken, after outsourcing to Mayo…. The end result was needing VATS surgery, after 8+ awful weeks of stress starting with the first bronchoscopy.  Once the PET was done early on and showed high uptake, I wish the very next step was surgery for me, and hate that I wasn’t given that option at the time.  If it’s hard for them to figure out what kind of cancer it is, spend as much time as you’d like figuring out what the stuff is after its out of my body… start by getting it out of my body.  Just my .02 cents

Lori,
 
I had 2 bronchoscopy’s, the first flexible, and the second a rigid one with laser ablation.  The first was non diagnostic, and the second eventually was diagnostic but took 6 weeks for them to reach a diagnosis from the larger sample taken, after outsourcing to Mayo…. The end result was needing VATS surgery, after 8+ awful weeks of stress starting with the first bronchoscopy.  Once the PET was done early on and showed high uptake, I wish the very next step was surgery for me, and hate that I wasn’t given that option at the time.  If it’s hard for them to figure out what kind of cancer it is, spend as much time as you’d like figuring out what the stuff is after its out of my body… start by getting it out of my body.  Just my .02 cents

Lori,
 
I had 2 bronchoscopy’s, the first flexible, and the second a rigid one with laser ablation.  The first was non diagnostic, and the second eventually was diagnostic but took 6 weeks for them to reach a diagnosis from the larger sample taken, after outsourcing to Mayo…. The end result was needing VATS surgery, after 8+ awful weeks of stress starting with the first bronchoscopy.  Once the PET was done early on and showed high uptake, I wish the very next step was surgery for me, and hate that I wasn’t given that option at the time.  If it’s hard for them to figure out what kind of cancer it is, spend as much time as you’d like figuring out what the stuff is after its out of my body… start by getting it out of my body.  Just my .02 cents

I have most distressing news !!!
Sadly my wife Fozia has passed away on Monday 8th August 2022 💔
I would like to thank everyone on this forum for your guidance and support.
stay safe !
regards
sajid 

Woohoo!  Enjoy your trip

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

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

Woohoo!  Enjoy your trip

Woohoo!  Enjoy your trip

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