G.A.M. Posted May 20, 2020 Share Posted May 20, 2020 I got my hands on the pathologist's report and the diagnosis is pT3 N1 large cell neuroendocrine carcinoma. Because of the COVID-19, I haven't been able to meet with my surgeon to get the results from his mouth. I searched the whole of the forums for the word 'neuroendocrine' with nothing found. It is possible I'm searching wrong? I have surgery scheduled for the 28th to fix the subclavian stenosis and am scheduled too start chemo on June 4, and I'm just finding this information out. All google will say is it is rare and starts in a particular type of cell. Any help would be appreciated as I google on. Best, Glenn Link to comment Share on other sites More sharing options...
Rower Michelle Posted May 20, 2020 Share Posted May 20, 2020 Hi Glenn, Yes, you are on the right track, it’s very rare indeed. I can only think of one member who had a similar pathology report. As I recall there isn’t much published and this member left his original oncologist after he located another one who had previously treated something like 1-3 other patients. I think it’s worth reaching out to both the Lungevity helpline and the Go2Foundation to see if they can find anyone in your area of PA with clinic experience. Rare cancers are just that, clinical intuition is a real differentiator. Are things any better in terms of access in the County? Michelle Link to comment Share on other sites More sharing options...
BridgetO Posted May 20, 2020 Share Posted May 20, 2020 Hi Glenn, I agree with Michelle about looking for a doc that has some experience with your type of cancer. Prior to my lung cancer, I had a rare form of gynecological cancer, stage 3, Grade 3 (very aggressive). There were literally no studies published about it, it was that rare. So my oncologist had no experience with it and proposed to treat it like any other cervical cancer. She believed my prognosis to be "dismal" I sought a second opinion from a doctor at our local Comprehensive Cancer Center. She had some experience treating this type of cancer and recommended some additional treatment, which I had. I think this treatment likely saved my life. Despite the prognosis, I've been NED since my first line treatment was completed, almost 9 years ago If you're not able to find a local doc with the experience you want, you could look for one elsewhere, who could review your records consult by phone. Hang in there, Bridget Link to comment Share on other sites More sharing options...
TJM Posted May 20, 2020 Share Posted May 20, 2020 G.A.M. Wow. You are the first patient I have found with the same diagnosis as me. I went from thinking stage 2 NSCLC with surgery being a cure to Large cell based on biopsy after surgery. I too have had a hard time finding much information as it is rare and based on better knowledge getting rarer. Best I can find is Large cell is treated exactly like SCLC and has roughly the same prognosis. So I went from a discussion around adjunctive Chemo for stage 2 NSCLC to an automatic Chemo followed by radiation strategy. The Chemo is first line SCLC (Cisplatin/Ept) 4 cycles followed by 25 rounds of radiation. I did have surgery so the tumor is gone. I'm on my last round of Chemo this week (week behind because of low WBC) then 3 weeks off then start radiation. I have had ZERO luck finding an Onc that has seen more that a couple of cases of Large Cell. I got a second opinion who concurred with treatment but also had limited experience. So, as Tom would say, I stayed the course. Stats are not the best (what Stats you can find) but my Onc still says he is going for NED and the tumor was successfully removed. Interesting that if the diagnosis was known before surgery it may have been a battle to have gotten approval for it, so I am even a rarer beast.. large cell with surgery. I have given up research for now because last couple of Chemos have been rough and I havent had the energy to think hard. I plan on getting back to it during Che.o/radiation break. Please share if you find any good info. Best of luck and keep in touch Peace Tom Link to comment Share on other sites More sharing options...
G.A.M. Posted May 20, 2020 Author Share Posted May 20, 2020 @Rower Michelle - The governor is allowing the hospitals to do more than COVID-19 and emergency treatments now. Businesses are still closed, which is an awful thing. Some may never recover, unfortunately. This whole deal will be a sad time in history, I believe. Thanks for the information. I also thank @TJM and @BridgetO for their input. If any of you happen across information, point me there and I'm on it. Best, Glenn Link to comment Share on other sites More sharing options...
G.A.M. Posted May 20, 2020 Author Share Posted May 20, 2020 After a lot of looking, this is probably the most complete paper I've found on the subject and it has many references to the source material. It's from 2017 and I'm sure treatment options have improved since then, but the pathology hasn't. I wish it was a happy paper, but it is not. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5653527/ For: @TJM, @BridgetO @Rower Michelle I suppose this should be posted somewhere when the next person wants to know what neuroendocrine carcinoma is. Can someone tell me the best place to drop it? Best, Glenn Link to comment Share on other sites More sharing options...
Rower Michelle Posted May 20, 2020 Share Posted May 20, 2020 Hi Glenn, First things first, diagnosis is not prognosis. We've all read Stephen J. Gould's Essay, https://journalofethics.ama-assn.org/article/median-isnt-message/2013-01 Believe it or not circa 2017 is really outdated, lots has changed in leaps and bounds. Try as best as you can, not to think about what's uncovered by Dr. Google, anything older than say six months is behind the curve. Bridget- Do you think it's worth chatting with the other moderators @Tom Galli to see if there could maybe be another Forum title for Large Cell Lung Cancer? I'm starting to suspect these rare cancers are becoming less rare, maybe it could help people like Glenn and @TJM band together to swap their experiences? Any other ideas on how to get the word out? Michelle Link to comment Share on other sites More sharing options...
BridgetO Posted May 22, 2020 Share Posted May 22, 2020 Hey Tom Galli- shall we ask Kristin to start a new forum title? I think it's a good idea, but I don't think we as moderators can do it. Bridget Link to comment Share on other sites More sharing options...
TJM Posted May 22, 2020 Share Posted May 22, 2020 FWIW guys/gals I read introduce me posts going back from 2003 till 2011 and found a total of two posts with zero information medically. Not sure a separate forum would get much play. Maybe an update on LC 101? Not much helpful info on Large Cell there tho it is mentioned. Peace Tom Link to comment Share on other sites More sharing options...
Tom Galli Posted May 22, 2020 Share Posted May 22, 2020 Bridget, I already made the request to Kristen to establish a Large cell portion of our forum. Stay the course. Tom Link to comment Share on other sites More sharing options...
LUNGevityKristin Posted May 22, 2020 Share Posted May 22, 2020 We are working on getting the Large Cell forum up and running, I will send and update when it is ready to go! Link to comment Share on other sites More sharing options...
Rower Michelle Posted May 22, 2020 Share Posted May 22, 2020 That's awesome. Even though there hasn't been too many historical posts, I suspect there are a number of silent participants who could benefit from the hard work of our guys. In my opinion, even if we can reach one person, it's a huge impact. Thanks Kristin! Link to comment Share on other sites More sharing options...
LUNGevityKristin Posted May 22, 2020 Share Posted May 22, 2020 Definitely! It should be finished by the end of the day. Link to comment Share on other sites More sharing options...
TJM Posted February 10, 2021 Share Posted February 10, 2021 Curious. Was this done? Link to comment Share on other sites More sharing options...
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