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!

As someone who had numerous chest X-rays over a 3 year period starting in my late 30’s, and was treated for pneumonia 3 times in 3 years based on the X-rays, with no other findings… I couldn’t suggest more strongly that you demand a CT scan based on the information you provided, if only for your piece of mind. Based on your age and risk factors, lung cancer is not considered soon enough. CT is easy to do and provides far more diagnostic information then an X-ray.

9.6 Max SUV

Some items for next week- curious if anyone has thoughts or experience with anything similar- #1- tumor board at the hospital group is going to review my case Monday morning. (Has anyone had this done? Do they provide a report to me after? Findings, suggestions? Is it more of a discussion- or do they try to meet minds and create a recommended action plan that is then provided?) #2- pathology report came back late Thursday afternoon, but basically just stated it had been sent Mayo and Dr name of who is assigned now to provide diagnosis. No discussion of findings, suspicions or anything similar. This is supposed to be late next week, whatever that means, that the diagnosis from Mayo comes back. #3- my pulmonologist agreed to refer me to a thoracic surgeon last week, and I have a consult scheduled for Thursday early afternoon. What questions are good to ask? with the timing of the tumor board, the Mayo report, and the thoracic surgery consult… i may or may not have a lot more info then I have currently when I meet with them. My hope is not to insist on a particular course (ie surgery no matter what)) but to have that option thoroughly explained (risks, complications, challenges specific to me based on location in bronchial airway etc) and have everything queued up to be scheduled asap if the diagnosis from Mayo suggests it would be the appropriate treatment, or potentially also if it continues to be inconclusive with an open ended timeline for further testing. Haha- so many questions! Would love any insight or thoughts any of you might have! also I think I’m somewhere between an F or F- in regards to managing stress this week. Any tips lol? cheers

Hi all, I wanted to follow up on where this crazy roller coaster ride has taken me since the last post. Last Tuesday 5/24- I went ahead with the rigid bronchoscopy w/ laser and cryo resection of the endobronchial tumor. The surgery went fairly well... took 4 hours under general anasthesia as the growth was more thick or potentially calcified then expected. Pictures from the broncho camera show it blocking over 95% of airway and then being gone. Fairly minimal recovery, mostly done in a few days. The plan was I should receive a diagnosis on Friday... and make a plan for whatever next steps from there... Pathology couldn't get to the test by Friday- so my pulminologist who did the surgery called me at 5:30 on Friday evening and told me he hoped to hear from him Saturday and would give me a call. Long holiday weekend comes and goes, and no call... Isn't waiting fun! This morning I get a call from pulmonogist with quite an update... The pathologist and him talked Saturday, and the patholigist doesn't know what it is. He is going to try to put his heads together with 2 or 3 colleagues locally in PDX to give report Wednesday or Thursday, but Pulmonologist says its overwhelmingly likely this will be sent off to the Mayo clinic this week, who would be able to likely provide diagnosis by late NEXT week. What he learned from the Pathologist on his call this weekend- #1- it is not small cell or non small cell lung cancer, #2- it is not a carcinoid tumor (either typically or atypical), #3- it is not a harmatoma. So that covers somewhere around 99% or so of endobronchial tumors. I'm beyond impressed by everyone who has been able to get through the diagnosis phase... IT's been 41 days since my first CT scan, 32 since my first bronchoscopy, and no longer even a direction in regards to what it "might be" except for its very, very rare... I am completely freaked out, and not sure at all how to hold up for another week and a half with no idea what is going on... I feel like the only positive thing I have going for me at this time, is the PET scan showed it localized, and I wish we could just schedule a day for lobectomy as soon as reasonably possible, and figure out what it is after it is out of me. Patience was doing ok... and this reset of all the timeline and undoing of the "previous suspicions" is hitting me really, really hard today. I want off this ride lol

Karen, Thanks for your thoughts much appreciated! The consult went well yesterday, and I do like the interventional pulmonologist that I’ve been referred to. The uptake on the PET throughout the area of the tumor is 9.75. I know without a biopsy confirming, it is not a “cancer diagnosis”, but it’s an endobronchial tumor completely blocking an airway with a GFU uptake that very strongly suggests cancer. It seems to me that we are trying to determine the type of cancer at this point, not if… The most common treatment for a localized lung tumor blocking an airway, whether benign or cancerous, is a lobectomy… but the location of it is such that it is a fairly complex surgery- would require a sleeve resection and possibly 2 lobes removed… My pulmonologist believes if it is a carcinoid tumor he can treat it entirely through broncoscopic procedures- 2 more bronchoscopic procedures after this one next week. If it’s an atypical carcinoid or something else more aggressive- this procedure has no negative impact on vats surgery or radiation treatments that would follow. If it’s benign the surgery next week could be curative and monitoring would be all that’s required. Im doing pretty well so far this week and have found peace with this course. I like having a plan… next Tuesday is the procedure, before next weekend I’ll have a definitive diagnosis, and next steps will go from there. The uncertainty the last 4 weeks has been the hardest thing I’ve dealt with. I’m a 41 year old widow with boys 10, 8, and 3. The idea of leaving them alone is more then I am capable of truly processing. Thank you to this forum and everyone’s feedback. I have my fingers and toes crossed for next week and genuinely appreciate every story I’ve read on here and every person who helps others through this horrifying process. much love ❤️

Thank you both for the thoughts and information. I was able to get in for my PET scan on Friday. The results were worrisome, but not definitive for a localized malignancy where the tumor is located. No sign of spread to any other areas... My initial thought when receiving this info Friday was to want to have surgery as soon as possible to remove whatever it is. My pulmologist has instead referred me to a specialist pulmonologist who wants to remove the tumor using a rigid bronchoscope and laser. I am meeting with him this afternoon at 4 PM to get more information about the procedure, which they would like to schedule for Tuesday or Wednesday of next week. In his words, a thoracic surgeon would almost certainly not agree to perform a lobectomy without a formal cancer diagnosis, and by removing this with the bronchoscopic procedure it will have the following benefits: #1- they can do it much sooner then they could schedule a VATS surgery (which the scheduling process is likely not even possible to get rolling without further diagnostic tests) #2- it has a very good chance of fairly immediately fixing the current symptoms in my lung from the blocked airway (atelectasis, inflammation in airways) #3- it is also definitively diagnostic as they can take samples from the growth after removal... in certain scenarios, where those are found to be benign, it would also likely be curative, leaving lungs in tact... Are there any questions or concerns that this group thinks I should ask at the consult this afternoon? I'm not particularly scared of the procedure itself... I do worry it is likely the lead up to a VATS surgery, that to me in a lot of ways I'd rather just do that and skip this step.

Thanks Tom- still completely petrified about the upcoming tests, but I guess I need to take good news for today and continue on. I appreciate your feedback a lot!

Results came back late today from bronchoscopy... though they are negative (yeah!) they are also very "bland" according to my pulmonologist and require more study. She has requested a PET scan to be done asap... This roller coaster ride is absolutely insane... and I have this terrible suspicion I can't shake, that it is only getting started. Does anyone have any insight or thoughts on the pathology report, or of bronchoscopys missing stuff found on PET scans? Collected Date: 4/29/2022 14:21 PDT Case Number: SM-22-0001416 Surgical Pathology Report DIAGNOSIS Diagnosis After Microscopic Examination: Lung mass, right lower lobe, biopsies: - Fragments of benign fibrotic/sclerotic tissue with patchy areas of calcification. - AFB and GMS stains negative for acid fast and fungal organisms . - Negative for malignancy. - See comment. 05/03/2022 15:14 MJC/JKH (Electronic Signature) . . Review Dr. D. Glidden has reviewed this case and concurs with the diagnosis. Comments The submitted material consists of nodular fragments of densely fibrotic/sclerotic tissue, which have patchy areas of calcification. There is no overt cytologic atypia within the submitted material and no immunohistochemical evidence of malignancy. However, sampling issues must be considered, especially on small biopsy specimens, as an underlying lesion or process may not be represented within the submitted material. If high clinical suspicion exists, submission of additional materials is recommended. Clinical correlation required. See pathology report CP-22-1521 for complete cytology evaluation. Immunohistochemistry The following immunohistochemical and special stains were performed with adequate controls. Pooled cytokeratin staining highlights the rare benign bronchial epithelial cells and shows nonspecific staining within scattered histiocytes. CD68 staining highlights the admixed histiocytes within the fibrotic regions. Cytokeratin 7 and TTF1 stains highlight the benign bronchial elements. These elements also show small subset positivity with CK5/6 and p63. Synaptophysin and chromogranin staining is negative. There is no immunohistochemical evidence of malignancy within the submitted material. AFP and GMS stains are negative for acid fast and fungal organisms. Congo red staining is performed and is negative for amyloid deposition. (Analyte specific reagents are used in many laboratory tests necessary for standard medical care and generally do not require FDA approval. This test was developed, and its performance characteristics determined by Legacy Laboratories. It has not been cleared or approved by the U.S. Food and Drug Administration.)

Tom, Thank you! For the bio marker testing- is this something I should explicitly request from pulmonologist prior to bronchoscope tomorrow?

Thank you Tom! I know I'm reading tea leaves at this point, and mid-late next week I'm supposed to have a diagnosis, so it's almost certainly not worth the effort/stress... but wanted to get some feedback other then from the google... and have been really impressed with some of the other threads and the feedback I've read through today. I had my consult with the pulminologist this morning and left with a few pretty strong curiosities at this point... how does a radioligist suspect something that rare (Lung carcinoid) over something that is 20X or so more common (NSCLC)? Do initial CT scans of chest, lymph nodes etc - have a relatively good track record of being predictive of finding spread as well as locating the primary tumor, or not really and the PET scan later often finds significant spreading the CT doesn't show in regards to lymph node or other distant areas? Thanks so much again, it is extremely appreciated!