BroFTW Posted July 18, 2021 Share Posted July 18, 2021 I have been reading the forums for a while, so I decided to write finally. My brother is 50 and was diagnosed with small cell back in May, after 2 months of cough and throat issues. (He was a smoker for about 30 years and during this winter he had an episode where he inhaled the fire place smoke for quite a while, wind was backing up the smoke indoors) The PET scan back then showed a mass 5cmx8cm, (main right bronchus and lower lobe bronchus) and a conglomerate of enlarged lymph nodes, all on the right side. He started chemotherapy immediately with cisplatin and etoposide, He had 4 cycles of chemotherapy, during which he was feeling fine and he actually got better in a sense that he stopped coughing and his breathing improved. Fatique was the only side effect, about a week after chemo and some blood pressure changes, but for the most part I think that he could not have had a better experience with chemotherapy. He got a control PET scan a week ago with very good results (if such thing can be said for sclc, but it is something), the only detected mass is 3cm in the right inferior lobe. All lymph nodes (again right side only) are under 1cm (slightly enlarged) as the report says. Now we need to have a meeting with a surgeon to check the possibility for a surgery and of course with the oncologist again to decide on a course of treatment. It seems to be regional still, or local, as I am not sure what do enlarged lymph nodes mean, is it spread there or is it just a reaction of the immune system. (if anyone can comment on this please do). No lesions detected in other organs. He is doing pretty well as I said, he can drive alone etc. If surgery is not an option, radiation is the next step. It seems like if it is a surgery it will be a lobectomy, but I am doubtful about the previous locations of the cancer (main right bronchus) if that would not be a location that would allow for a recurrence. This is my introductory post. Link to comment Share on other sites More sharing options...
TJM Posted July 19, 2021 Share Posted July 19, 2021 Welcome. Excellent introductory post. So sorry about his diagnosis. I assume the were able to get a biopsy if they have made the SCLC call. Small Cell is a tough one. I have read a few things indicating treatments for Small Cell are also improving rapidly but I am not real up to speed. I have Large Cell NET. It's rare enough that they don't have many clinical trials for it. First line treatment is the same as for SCLC because it has a history of spreading like Small Cell. I recieved the same Chemo ( also tolerated it well) for adjunctive therapy after I had a lobectomy. That was followed by adjunctive radiation ( consider that carefully before doing). Treatment finished almost exactly a year ago. I'm currently NED and feeling fairly good. Regarding the lymph nodes. They could easily be caused by something else. If all are in the same lobe then they check them during surgery. Importance depends on where they are and if they are cancerous. I'm hoping that surgery is an option for him but seems rare for Small Cell. Mine was assumed to be vanilla LC and surgery was scheduled quickly and was much easier than I had feared. It was after that they found it was Large Cell and had spread to a bit more distant lymph nodes. I am not sure they would have done Surgery if they had known. It would have been a close call...but I think we would have followed the same course of treatment. Sorry for the long post. You should be hearing from others soon. I can tell from your post you have educated yourself well and are going to be a great advocate for him! Keep us up to date. Again, welcome home. Peace Tom Link to comment Share on other sites More sharing options...
Tom Galli Posted July 19, 2021 Share Posted July 19, 2021 BroFTW, Welcome here! I just realized you are from the country of Macedonia. Ohrid is north of Greece and East of the border with Albania. I complement you on your English! As Tom mentioned, Small Cell is indeed tough to treat. Your brother's reaction to cisplatin and etoposide is a good and I hope sustaining. It is also comforting to know that cisplatin and etoposide is also first line (first treatment) standard of care treatment in my country. So your brother is receiving the best first line care available. Here is a summary of information about Small Cell that you may find useful. Surgical treatment is the most effective way to treat any form of lung cancer, including Small Cell. I do hope his surgeon can successfully resect the residual tumor and effected lymph nodes. Questions--ask away! Stay the course. Tom Link to comment Share on other sites More sharing options...
BroFTW Posted July 20, 2021 Author Share Posted July 20, 2021 Thank you guys for your comments. Yes, I forgot to mention that he had a bronchoscopy with biopsy after the first PET scan. Reading the forums I also realized that the treatment for sclc is standardized everywhere, which to some measure is unfortunate as it indicates that it is not researched as well as the non-small cell. Honestly though, it does bring a peace of mind that we are at least using all options available. It would be difficult to read about treatments that are out of reach facing such a horrible deasease. Also, after being diagnosed my brother stopped smoking, and started to eat healther foods. Although, he did eat pretty healthy before. But more focus on fruits and vegies now. He also managed to gain back some weight, not to what he was but to a regular weight for his height. Not a surprise, but the days before he started his first chemo cycle were devastating for all of us, can't imagine how he felt. Now he is feeling so much better. Little frightened by the prospect of a surgery, because it is well, surgery, but still he is feeling great. I guess being vital and in general good health (apart from the cancer) makes it easier and more feasible to battle the damn thing. We have also spoken to accept any news whatever they are and move on as best we can, whether it will be surgery or radiotherapy with chemo again, it is what it is. It really feels like staying positive plays a role on how you strong you can fight it. P.S. I am in general good with languages, bit I learned English mostly from TV shows and movies :) Link to comment Share on other sites More sharing options...
Tom Galli Posted July 20, 2021 Share Posted July 20, 2021 BroFTW, There is an emerging new treatment option for SCLC that offers promise--immunotherapy. Read this information (click on the right pointing triangle for the topic: Immune Checkpoint Inhibitors. I do hope your medical system has access to immunotherapy drugs. Stay the course. Tom Link to comment Share on other sites More sharing options...
BroFTW Posted July 21, 2021 Author Share Posted July 21, 2021 Just came out of the visit with a thoracic surgeon. He suggested a bilobectomy, middle amd inferior lobe to make sure everything is removed since the leftover of the cancer is in the bronchus division for middle and lower lobe. He was confident that it will be a successful operation and that he has dealt with far more complicated cancer surgeries. Still we need to make a decision. After all the reading on small cell cancer it feels like the right thing to do. He also noted the high probability of the cancer returning even with complete remission. Link to comment Share on other sites More sharing options...
BroFTW Posted July 21, 2021 Author Share Posted July 21, 2021 The oncologist on the other hand is really against amd based on the so far progress is adamant that concurrent radiotherapy and chemotherapy will finish of the remaining cancer. This will be a tough week, a lot to consider. Link to comment Share on other sites More sharing options...
Tom Galli Posted July 21, 2021 Share Posted July 21, 2021 BroFTW, Agree. Your decision space will require a tough week. What do you do when both physicians treating your brother are "right". Stay the course. Tom Link to comment Share on other sites More sharing options...
BroFTW Posted July 30, 2021 Author Share Posted July 30, 2021 Just an update, after discussing again with oncologists about the operation im details, my brother and the entire family really, decided to continue with radiation and chemotherapy. Hopefully treatment will be as successful as was so far. Link to comment Share on other sites More sharing options...
Dona Posted August 1, 2021 Share Posted August 1, 2021 BroFTW, Pls keep us updated on your brother's treatment. The news appears positive at this point, so best of luck and prayers for continued positive news. Dona Link to comment Share on other sites More sharing options...
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