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!

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

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.

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

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

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!

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.

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.

Thanks Justin! I’ll update once I’m done with the surgery and stable. Bridget, No kidding! Article I found suggested there have been 24 of this diagnosis made in recorded medical history… team Unicorn 🦄

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!

Thanks Tom and Lilly, I appreciate all the input. I do have an oncologist on my team, but won’t get to meet them prior to surgery. First appt is scheduled for 7/18, so hopefully a few days after I’m out of the hospital. The first Mayo report calls it a low grade spindle cell neoplasm of unknown type and biological potential…. That along with the high fdg activity sort of screams cancer… but they aren’t sure what. Mayo has been doing molecular testing the past 2.5 weeks and are supposed to issue a second report based on those findings. Hoping they have more info prior to oncologist appt. Kinda feel like they won’t have much to go on at this point. Could be sarcoma, could be carcinoma… could be? I think if having a simpler resection I would have chosen the second surgeon who specializes is VATS and is very highly regarded. It does seem like the robot has some real advantages to my particular surgery and the likelihood of minimally invasive. The RATS said less then 1% chance he has to switch to open, the VATS lady said more likely then not she could do VATs. Say 51-80%ish is how I took it. I definitely am open to chemo, I’m 41 and in good health, so anything I can do now to lower odds of reoccurrence I’m all in.

Hi all I've found some great tips on recovery and expectations on this site for VATS/RATS lobectomy. Any more would be appreciated! I now have my surgery scheduled for 7/13. I had the privilege to interview 3 surgeons, and all 3 had different approaches to sleeve resections. It seems through these discussions, and some research online, that the RATS systems offer a pretty significant advantage in regards to being able to perform this type of surgery without having to do full open surgery. One surgeon would only do a thoracotomy, the second surgeon would plan for VATS but candidly said wouldn't know until they opened me up if they could do the procedure that way, or if they would need to switch, and the RATS surgeon said he was certain he could do the procedure with the minimally invasive incisions... Anyway- I thought it was pretty interesting how different the 3 strategies were, and I think the technology just allows them to not need quite as much space, which in my particular case ends up being kind of a big deal. Does anyone have any experience with the robot VATS recovery? It seems to be pretty similar to traditional VATS from what I've seen. None of them were certain if it would be a RLL lobectomy, or if they would also need to take out the RML. The airway runs pretty close to the intersection, and obviously the higher priority is clean margins, so they will test during the surgery and do their best to save lung while prioritizing getting it all out with clean margins. Mentally, after now over 2+ months since tumor discovery, still not having a firm diagnosis of what the tumor exactly is, having been through both flexible and rigid bronchoscopes etc... I feel ready for the surgery, and to have this part of the journey behind me.

Thanks Lou! Super helpful. I will be going through with surgery for sure, just deciding on which surgeon. How close to fully recovered do you feel over time?

Thanks for the feedback! Now have my 2nd opinion consult set for this upcoming Monday. Placeholder on the calendar for surgery with 1st surgeon I’ve already consulted with for July 7 if I proceed with him. Estimated follow up supplement report from Mayo is to be completed next Wednesday. Hurry up and wait at least has some baby steps forward this week

Hi all, Quick update on my story. Yesterday late afternoon the Mayo Clinic submitted their report... So 2 weeks with the Mayo folks, and they also aren't sure what it is. The final note, at least someone agrees with me, that regardless of what "exactly" it is, we need to get it out surgically ASAP. So the next steps will be arranging that. I'm curious if anyone has gotten a second opinion on a thoracic surgery consult? I consulted with the one through this hospital group last Thursday, and he was very nice and does the robot VATS... but has also only been doing these since February, and it sounds like this is a pretty delicate one where it is possible that it could end up being 1 lobe, or 2 lobes that need removal, along with sleeve resection... We have a cancer center in town that looks like it may have more expereinced surgeons available- is it common or a good idea to get a second opinion on the surgery plan itself? CONSULT DIAGNOSIS FINAL DIAGNOSIS Lung, right lower lobe, endobronchial biopsy of mass (SG-22-0002863; 05/24/2022; CA-22-3526): - Low-grade spindle cell neoplasm, of uncertain type and uncertain biologic potential, with classification PENDING additional testing and an additional report to follow (see Comment). Comment: I have sent material for our next-generation sequencing panel that Includes 138 genes commonly rearranged in mesenchymal and salivary-type neoplasms, in the hopes that a more definitive diagnosis can be reached. As this testing will take some time (approximately two weeks), I am issuing this preliminary report today, but I will issue an additional report when testing has been completed. Regardless of the outcome of this testing, this mass should be surgically resected, if possible. Thanks again for everyone... It's not the best news, but I am quite relieved to have an action plan, and fairly close to an actual diagnosis after nearly 2 months!