Monica L Posted February 10, 2022 Share Posted February 10, 2022 So confused about what oncologist keeps telling us despite test results of plural effusion. My mom is 78 diagnosed with stage 3b nonsmall cell lung cancer in October of 2021, has had 3 plural effusions drained and they tested the fluid from two of them and they both came back NO MALIGNANT CANCER CELLS FOUND, but yet Dr changed treatment after first test to only chemo, then told her she has weeks to months to live, because he said the tests are wrong 40% of the time. Then changed cancer to stage 4. Every thing I’m reading says the tests are accurate, now he’s saying because the fluid was bloody means cancer cells are in fluid despite test results. So confused any insight would be greatly appreciated. Thanks Link to comment Share on other sites More sharing options...
LouT Posted February 10, 2022 Share Posted February 10, 2022 Monica, I'm sorry to hear about your mother's condition and situation. I'm not sure anyone here will be able to give an answer regarding the plural effusions your mother has suffered. We have to stay away from diagnosis of any kind. But, I can help you better understand staging and what goes into it. You can find that information here. The literature indicates that bloody effusions are often linked to malignancy, but no one trait alone is sufficient for a full diagnosis. Your doctor would need to depend on the totality of all the testing done, your mother's condition (number of tumors, tumor size and metastasis, etc.) and combine all of that with his experiential knowledge for a conclusion. If you are still in doubt of the findings please look for a second opinion or reques that a tumor board review your mother's case. This disease is hard enough without the addition of uncertainty and potentially mistrust. Get solid answers so you and your mother can make decisions going forward. I hope this helps somewhat. Lou Link to comment Share on other sites More sharing options...
Monica L Posted February 10, 2022 Author Share Posted February 10, 2022 Thanks Lou, any info helps me. It’s all so confusing because her cancer is only small on one lung and 2 lymph nodes on the same side I think up by her neck, she had no symptoms and they found it on accident doing a different test. I also thought they would go by all the tests and decide, which one dr said but he is dismissing the negative tests of the fluid. And all of her labs look really good, I get more confused everyday. And now she is very upset like she’s giving up already after one chemo. Link to comment Share on other sites More sharing options...
Judy M2 Posted February 10, 2022 Share Posted February 10, 2022 Monica, I agree with Lou that a second opinion is called for. Did they even do any biomarker testing on your mom? Link to comment Share on other sites More sharing options...
BridgetO Posted February 11, 2022 Share Posted February 11, 2022 Here's another vote for a second opinion. Link to comment Share on other sites More sharing options...
Monica L Posted February 11, 2022 Author Share Posted February 11, 2022 All of the records are hard to read but I think they did but there is nothing that jumps out as anything I have read or seen on these posts. Nothing makes sense.I am going to call for a second opinion. Thank you all very much. Link to comment Share on other sites More sharing options...
Monica L Posted February 14, 2022 Author Share Posted February 14, 2022 So I’m not sure what I’m looking for when you say Biomarkers on her chart. Here is what I see. Muts/Mb, MSI Negative, TheraMap testing demonstrated. Tier llC PIK3R1, and PTEN, Tier llD PTPN11 PD-L1 TPS <1% (negative) TMB High 17.3. I have no clue what any of this means. Any help would be great. Or if there is something else to look for. Im calling for second opinion tomorrow at our University teaching hospital. thanks so much everyone. Link to comment Share on other sites More sharing options...
Tom Galli Posted February 14, 2022 Share Posted February 14, 2022 Monica, Welcome here. I believe TheraMap is a trade name for biomarker testing (a company or technology that searches for biomarkers). Here is more information about what markers TheraMap testing reports. Therefore it appears, your mom's tumor has been tested for biomarkers. PD-L1 is an abbreviation that means programmed death ligand 1. The expression in your mom's test of less than 1% is suggested as a predictive biomarker for the effectiveness of immunotherapy as a treatment. Here is more information on immunotherapy as a treatment method for lung cancer. You should have your mom ask about the possibility of immunotherapy as a treatment method. TMB is an abbreviation for tumor mutation burden and your mom's results are considered high and that points to immunotherapy suitability. Here is information on TMB and what it means in terms of treatment information. Again, your mom ought to discuss immunotherapy as a possible treatment method. Pleural effusions are tricky. If cancer cells are found in the effusion fluid, the answer is easy--Stage IV diagnosis. But if no cells are found, then other indicators like blood in the fluid may point to Stage IV. Cancer staging, especially in lung cancer, is significant only in terms of a surgery or no surgery decision. When effusion results points to no surgery, then systemic therapy is needed. But that therapy can be very effective. It will mostly likely be concurrent chemotherapy with radiation. Depending on the PD-L1 and TMB expression, your mom's chemotherapy may be combination chemo (a cocktail of conventional chemotherapy plus immunotherapy). Chemotherapy and radiation, sometimes abbreviated chemo-radiation is very effective treatment. My first treatment for Stage IIIB was chemo-radiation, and the after treatment scan showed no evidence of disease (NED). Unfortunately, I had a (actually 4) recurrences after surgery. And recurrences after "successful" treatment are regrettably relatively common. But I was diagnosed in 2004 and immunotherapy as a treatment means was not discovered. Moreover, radiation techniques have dramatically improved since that time. In fact, I had a just-in-time approval miracle in my treatment. I was one of the first lung cancer patients to benefit from the FDA's approval of SBRT (stereotactic body radiation therapy) as a treatment for solid tumors in the lung. That approval saved my life. My treatment miracle and the fact it was administered in the "treatment dark ages", 18 years ago suggests that if I can live, so can your mom! I hope this answers your questions. Stay the course. Tom Link to comment Share on other sites More sharing options...
Monica L Posted February 15, 2022 Author Share Posted February 15, 2022 Thank you so much Tom, that is very good info. Dr didn’t explain any of that. Yes he did say no radiation and at second chemo she will be starting immunotherapy he said. The plural effusion came back twice with no cancer cells detected, but the dr draining it said that it’s always blood tinged, he said that doesn’t mean much. So confusing. I have set her up with a second opinion though. I know treatment has come a long way. Problem is she got another UTI which turned to sever sepsis, so she’s pretty weak right now. They started giving her antibiotics for malignant plural effusion then realized it was sepsis even though I told them that’s what it probably was, then changed antibiotics. She had her fist chemo 3 weeks go and her hair is almost gone already so it’s killing something. If she doesn’t get strong and able to walk and stuff on her own she’s not going to do well. Thank you for so much info and explaining where I understand it.. ❤️❤️ Link to comment Share on other sites More sharing options...
Monica L Posted February 15, 2022 Author Share Posted February 15, 2022 Tom, By the way congrats on your successful treatment, hope you continue to be well. Link to comment Share on other sites More sharing options...
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