cannc1982 Posted July 30, 2015 Share Posted July 30, 2015 My name is Carly and my Father was recently diagnosed with adenocarcinoma non-small cell lung cancer. He also has rheumatoid arthritis and has suffered many years with this disease. We have our first oncology appointment next week and I am worried to death about him, and want to help any way I can. Can any of you tell me what to expect at our appointment? What kind of questions I should ask? What are some of the side effects of the chemo and radiation he will potentially receive? Have any of you ever been told surgery was not an option, and if so, why? Have any of you been told that surgery was not an option at first, by a different doctor, and then once you met with your oncologist it suddenly was an option? I just need all of the help and support I can get right now. While my Dad seems to be holding together very well, amazingly well actually, I am falling apart. Carly Quote Link to comment Share on other sites More sharing options...
Tom Galli Posted July 30, 2015 Share Posted July 30, 2015 Carly, Am happy your Dad is holding together. You need to also because family support is vital to assisting your Dad with his treatment. What should you expect at your first oncology appointment? It is hard to answer that question definitely. Each doctor operates differently and each patient is different. But, I'd say this list might be typical: 1. A discussion about the findings of each diagnostic test or examination ordered. (Assume diagnosis was the result of an x-ray or scan and additional tests have been administered). 2. An explanation of the diagnosed type and form of cancer and the extent it has spread. 3. Explanation of further testing or procedures necessary to substantiate the diagnosis and narrow the treatment alternatives. 4. A discussion about the treatment alternatives available to arrest your Dad's cancer. 5. If a treatment alternative is agreed upon, a discussion about the side effects of that treatment and impact on other health conditions (arthritis). What kinds of questions would I ask? How many tumors were found and in what locations? Is the cancer treatable and to what extent? What is the treatment cycle (when and what order will treatments occur)? What are the side effects of each treatment method? Can the tumor(s) be treated using cyber-knife or similar radiation technology? And many more. Here is my ten steps to surviving lung cancer that might prompt more questions. http://www.redtoenail.org/tensteps Read various forums on Lungevity and information from the American Cancer Society website about the nature of your Dad's cancer. Yes I was told initially surgery was not an option but not by an oncologist but a thoracic surgeon. If surgery is possible, your oncologist will likely refer you to the appropriate surgeon. You'll have many more questions and feel free to fire away. Stay the course. Tom Quote Link to comment Share on other sites More sharing options...
Donna G Posted July 30, 2015 Share Posted July 30, 2015 Hi Carly. glad you found us. It is great if the Patient has someone with them that can be a second set of ears. It is important to take notes. It is so hard to listen to and so hard to remember all the details. Should I assume that besides Pet Scans or CT's that a biopsy also was taken? It must have been since you said it is "Adenocarcinoma". They should discuss next what the plan of care options are and what Drs you need to see. Perhaps a Thoracic surgeon, an Onocologist , or a Radiologist that treats cancer. Generally surgery if an option if the tumor is localized , has not spread to another part of the body. I was stage 3B I first had 2 drugs of chemo and daily radiation, Then I was able to have surgery . After the plan was more chemo. This December it will be 18 years ago that they found the tumor. Please keep us posted on your next Doctor visit and how things are going. Donna G Quote Link to comment Share on other sites More sharing options...
cannc1982 Posted July 31, 2015 Author Share Posted July 31, 2015 Thank you both so much for your helpful posts! I have felt so alone and so upset and you gave me peace of mind. You gave me hope. I will keep you updated as his appointment is on 8-6. Thank you again so much, I believe you have both provide me with a night of rest. <3 Quote Link to comment Share on other sites More sharing options...
Denzie Posted August 1, 2015 Share Posted August 1, 2015 My stage 4 lung cancer was diagnosed by X-ray. They saw a large mass on my left side, shadows on the right lung and pleural effusion. Then came the full gamut of testing and 2 biopsies that confirmed adenocarcinoma. At that time I was told I might live 10-15 months. That as in 10/10. I'm about 4 yrs late for my own funeral and plan to be much later. When they do finally do the biopsy they will be testing to identify where in the cell the DNA mutated. That is the driving mutation. Since it has been some 30 years since he smoked there is an increased chance that his driving mutation is EGFR. If that is the case, there will be more options for treatment. If he is more comfortable in FL, definitely take him to Moffet. This link is to a comprehensive list of questions that cover everything from getting a diagnosis to long term survivorship. I recommend that you print it out as there is room provided to record the drs answers. The list is quite general so you should read through and cross some questions out. Do have someone take notes. http://m.cancer.org/acs/groups/cid/documents/webcontent/003285-pdf.pdf Quote Link to comment Share on other sites More sharing options...
CindyA Posted August 2, 2015 Share Posted August 2, 2015 Hi Carly, LUNGevity's website has great resources. Here is a link that I feel may help you. It is a list of "Asking the Right Questions" http://www.lungevity.org/support-survivorship/asking-right-questions Please keep posting, I look forward to getting to know you. Quote Link to comment Share on other sites More sharing options...
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