Lisa66 Posted February 2, 2018 Posted February 2, 2018 We had our diagnosis visit with the pulmonologist yesterday. He said that the squamous carcinoma was a better lung cancer to have. Without treatment possibly eighteen months with treatment, possibly years. We have the first oncologist appointment next week for treatment info. Is there any questions that we should ask, or any advise for this first appointment? Thanks in advance.
LaurenH Posted February 2, 2018 Posted February 2, 2018 Hi, Lisa, LUNGevity put together lists of questions to ask various members of your medical team. Here is the website where you can browse, download, and print the questions: https://www.lungevity.org/for-patients-caregivers/asking-right-questions/questions-to-ask-your-healthcare-professionals Additionally, this website can help you learn about squamous cell lung cancer, understand the treatment options available, get information about clinical trials, and understand how to manage the side effects associated with lung cancer treatment: https://www.lungevity.org/for-patients-caregivers/lung-cancer-101/types-of-lung-cancer/squamous-cell-lung-cancer I will also reach out to some of our members who have experience with squamous cell lung cancer and ask them to respond in this thread. Please let me know if you'd like me to provide you with more information about LUNGevity's support programs and resources. We are here for you! With gratitude, Lauren -- Digital Community Manager LUNGevity Foundation
Robert Macaulay Posted February 2, 2018 Posted February 2, 2018 Lisa the early indications I got from the pulmonologist is squamous carcinoma and begin the initial tetst next week prior to visiting the oncologist middle of Febuary.
Lisa66 Posted February 2, 2018 Author Posted February 2, 2018 Robert, I am trying to learn all I can about this disease. Listening to the pulmonologist gave us some encouragement. I hope your visit goes well. It seems you and my father will be starting this journey about the same time. I will post results from my dads first oncologist appointment. I will look for yours. Best of luck. Lisa
Lisa66 Posted February 2, 2018 Author Posted February 2, 2018 Robert, I am trying to learn all I can about this disease. Listening to the pulmonologist gave us some encouragement. I hope your visit goes well. It seems you and my father will be starting this journey about the same time. I will post results from my dads first oncologist appointment. I will look for yours. Best of luck. Lisa
Lisa66 Posted February 2, 2018 Author Posted February 2, 2018 Lauren, thank you for the links , I am grateful for any information. I feel inadequate at the moment. Y’all speak of things that are unfamiliar to me and I know I need to become familiar very quickly in order to help my dad through this. Thanks again. Lisa
Tom Galli Posted February 2, 2018 Posted February 2, 2018 Lisa, I am diagnosed with squamous cell NSCLC. I'm not sure I understand your doctor's statement -- no form of lung cancer is good! Squamous cell is recently becoming more treatable thanks to immunotherapy discoveries. Ensure you tell your doctor you want the biopsy tested for immunotherapy indicators PD-1 and PD-L1. So that would be my first question. My second question would be about staging and if the staging allowed surgery. I'd get a complete understanding of surgical possibilities, including radiosurgery. New forms of radiation (Image-guided Radiation Therapy [IMRT] and Stereotactic Body Radiation Therapy [SBRT]) are now being used to treat Stage IV disease with impressive results. A form of SBRT called CyberKnife likely saved my life. Moreover, one of our members, Judy M., had this new aggressive radiation treatment for Stage IV disease and wrote a blog about it. Read it here. If surgery and radiosurgery are not options, you'll likely have first-line treatment. That could be a combination therapy of conventional radiation (Standard External Beam Radiation Therapy) or a conventional radiation enhancement (Three-dimensional Conformal Radiation Therapy [3D-CRT]) coupled with chemotherapy. The name combination therapy means combining radiation and standard chemotherapy (i.e. Taxol and Carboplatin), and indeed this is the national first-line standard of care (the first treatment given) if surgery is unavailable as a treatment. In first-line treatment, radiation is the prime tumor killing agent and the chemotherapy dose may be less than full strength. Indeed, about a year ago, my explanation of combination first-line therapy would have ended here. However, advances in immunotherapy have given new squamous cell treatment tools to the medical oncologist. The immunotherapy drug Keytruda may be given without standard chemotherapy or in combination with standard chemotherapy as first-line treatment. Your dad's tumor PD-L1 expression is the determining factor. Thus my first suggestion for testing the biopsy for immunotherapy indicators. It does indeed sound complicated and it is. You've got a new vocabulary to learn and I believe patients and caregivers should be very knowledgable about all aspects of lung cancer. My wife's reading about CyberKnife and her question about that form of treatment during a fourth-line treatment failure consultation likely saved my life. Stay the course. Tom
Robert Macaulay Posted February 2, 2018 Posted February 2, 2018 Tom The above is excellent information Thanks Bob
Lisa66 Posted February 3, 2018 Author Posted February 3, 2018 Hi Tom, Thanks for the info. I went into daddy’s patient portal, and for some reason his pathology report won’t come up but I looked through his PET scan. Two mildly inlarged left superadavicular lymph nodes, 1.3x1.4cm and 1.6x1.0 these show moderate uptake in the head and neck. In the chest a large spiculated mass of the superior right lower lobe is seen measuring 3.3x3.30 demonstrating a maximal SUV of 16.8 consistent with a primary bronchogenic neoplasm, adjacent to this is a pleural based mass of the anterior right lung apex with extension superior and lateral mediastinal fat measuring 2.1x20 and demonstrates a maximum SUV of 4.0cm. The left peribronxhial lymph node measures 1.8x1.1 and demonstrates a maximal suv of 8.1. How is this squamous carcinoma. I looked up bronchogenic neoplasm and plural based mass and it doesn’t seem consistent with what the pulmonologist says. Does this look anything like yours?
Tom Galli Posted February 3, 2018 Posted February 3, 2018 Lisa, Neither a PET nor a CT scan can show a type of cancer ( Squamous cell). A PET can show metastatic disease (active cancer) and a CT scan can show tumors or nodules. But, only a biopsy can determine a type of cancer. So you’ll need to wait for the biopsy report to post to the portal. He’s had a biopsy correct? I’m not a doctor, so don’t rely on my interpretation of your dad’s PET. The abbreviation SUV on the report means standardized uptake value. The higher the value, the more likely the node or mass is cancer. Any SUV less than 2.5 is likely not cancer. Anything above could be. The report for two lymph nodes has “moderate”. I wouldn’t exactly know what moderate means but if 2.5 and below is low, then moderate might be higher than 2.5 and of concern. The spiculated mass in the right lower lobe at 16.8 is very likely active cancer. So may the reported plural based mass - SUV 4.0 and the left peribronxhial lymph node at SUV of 8.1. (Note there may be an error in the report showing a SUV as a unit of linear measurement, i.e.”SUV of 4.0cm”.) My take is he has active disease in 3 lymph nodes, one large mass in the right lower lung, and a mass in the plural tissue lining the chest cavity of the lower right lung. I hope this helps. Stay the course. Tom
Lisa66 Posted February 3, 2018 Author Posted February 3, 2018 Thanks Tom, He has had a biopsy and the pulmonologist says Matastisas Sqaumous Carcinoma and that if you had to have lung cancer this one you could live for years with treatment. He is setting us up an appointment with an oncologist next week. I tried to look at his pathology report on his patient portal, but it’s not there. It says this file has already been released. I don’t know what that means, but thanks though to you and others here, I will have good questions to ask. Always apprecative Lisa
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