Helpful Palliative support

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October 29, 2015 at 1:35 pm  #1271635    

cindy121

I would find it very supportive to have my Metastic NSCLC Adenocarcinoma limited to both lungs (stage IVA?) broken down into “stages”. It would help me know how well I am doing (in addition to scans). What are some “positives” that patients in this position can feel hopeful about? Ability to exercise? Take walks outdoors? Lung capacity on spirometer? Oxygen saturation numbers? “Size” or “area” of cancer? Number of lobes ? Any positive news indicated by any of the blood Tests? Number/size of nodules over 3 month intervals? It just seems like there’s information missing from a visit with the oncologist that would be encouraging, supportive, helpful for the patient to know about their condition between treatments and office visits.

October 30, 2015 at 3:30 pm  #1271669    
catdander forum moderator
catdander forum moderator

Hi Cindy,

You’re right there are tons of information about stage IV nsclc that can be helpful that you just can’t get in a doctor’s visit. Not so much because the doctor doesn’t care to share as much as there’s too much info to share in a visit, the doctor doesn’t know what your specific questions. That’s why we’ve found it very helpful to know as much about your questions as possible before hand and right down specific questions and take them with you to appointments. That way the onc knows where to start and what you want to know.

When there is cancer in both lungs but not outside the lungs much of the time survival is longer. If the cancer is growing slowly over time then it’s possible to take treatment breaks if needed, also it may be possible to stay on a treatment longer; not using up all options as fast.

There aren’t blood test at this time that are used in nsclc care that are as useful as other methods of detection.
You can/should go about your routine as you have been or would like to do as long as you are physically able. Exercise, walks all the things you want and need to do are right for you. Over time it may become difficult to maintain your normal schedule, at that time ask the specific questions you have to your oncologist who knows your needs best. If you ever feel like you’re not getting he care you need a second opinion from a lung cancer specialist is always the right thing to do.

Support from others who are going through similar as you can be extremely helpful, online or in person. Grace can answer most questions (see our guidelines) about cancer care. Sites such as Lungevity and Inspire are support sites that can be helpful as well. Ask your cancer center for info about local support groups.

Best of luck
Janine

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